Helping women with chronic illnesses
ChronicHealing.com

Colonoscopy Results (With Pictures)

If you’re not one for medical pictures, this isn’t the post for you. So I’ll warn you up front and keep the more graphic pictures for later in the post (in case they’ll make you queasy). I, personally, love it when doctors volunteer to give me pictures after a procedure or surgery. I find them fascinating. I also watched the entire colonoscopy on the screen while he did it. I was wide awake the whole time. In this particular case, the sedative medications for the colonoscopy appeared to do NOTHING for me and I felt the entire procedure. This isn’t how it’s supposed to work. I’ll write more about this later.

Let’s start with the good news. The colonoscopy is over, nothing terrible was found, the prep was better than past preps, and I’m starting to feel human again.

What do I mean by “feeling human again”? Well, let’s just say I did not bounce back from this colonoscopy the way I did from the previous three. I’ll write more on this later too.

First, I should give some history to put things in context and explain why I’ve had so many colonoscopies.

In the early 1990s, I began having problems with chronic diarrhea. There are times that are better/worse than others but I have had chronic diarrhea ever since about 1993. Certain foods are triggers and I try my hardest to avoid them. Somewhere in the early 1990s, I got labeled with the irritable bowel syndrome. (Please excuse the “psychosomatic illness” section in this wikipedia link. I decided that the wikipedia section called “Medical conditions that accompany IBS” was interesting enough to ignore the other section. So please just ignore it like I am).

Anyway, I have had diarrhea issues since 1993. No doctor has been able to help me. The only exception to that is that my pelvic pain specialist (who treats my interstitial cystitis) identified some foods that aggravate interstitial cystitis. Also, my acupuncturist has given some helpful tips on dietary changes I can make that are better for my overall health. The bottom line, though, is that I’ve had diarrhea issues since 1993.

For me interstitial cystitis and irritable bowel syndrome can kick each other off.

Rather than assume that everyone reading this is already familiar with IC, I decided it would make sense to include a brief video here. Since so many patients have both IC and IBS, I think it makes sense to tie them all together. (Not to mention that fact that I have many of the co-existing conditions listed on the wikipedia link above: IC, IBS, endo, fibromyalgia…)

I have blogged previously about the connection between IBS symptoms and IC symptoms:

Sunday, March 15, 2009 “Jeanne’s Endo Blog”: Interstitial Cystitis & Hot Peppers

The list below is not intended to bore you but to put things in context. Also, who knows? Someone reading this might be going through similar experiences and might find this helpful. So here goes…

Colonoscopies/intestinal surgery:

1993 – “normal” per gastroenterologist
1996 – partial blockage due to malrotated colon/paraduondenal hernia
1996 – hemicolectomy (bowel resection)… about 1 foot of colon removed
2001 – investigation for cause of rectal bleeding… no explanation found
2009 – investigation for cause of rectal bleeding and rectal clots (Dr’s take on it below…)

I had my first colonoscopy in 1993 and that gastroenterologist said it was “normal”.

Three years later, the doctor treating my endometriosis referred me to a colorectal surgeon. So in 1996 I had my 2nd colonoscopy. This colonoscopy, like the first one, was primarily to investigate why I was having such terrible diarrhea. (Doctors had tried numerous medications and none of them helped a bit).

The colorectal surgeon performed the 2nd colonoscopy in 1996 discovered a partial blockage during the colonoscopy. He informed me that I had a malrotated colon/paraduodenal hernia. Essentially my colon was twisted out of the position it should have been in. He also compared the films from the 2 colonoscopies and told me that the malrotation had been there in 1993 too. So the first doctor missed it.

Less than a month later, I had a laparotomy. The gynecologist treating my endometriosis and the colorectal surgeon who needed to do a bowel resection worked as a team. I am greatly appreciative that they set this up as a “double surgery” with both doctors present because it consolidated things and prevented me from having an additional surgery.

During my 1996 laparotomy surgery, endometriosis was removed, a hemicolectomy was performed (with a foot of my colon removed), and the doctors just happened to find a carcinoid tumor on my appendix so they removed my appendix.

For information on hemicolectomy, see this link: wikipedia’s colectomy entry (with info on hemicolectomy).

The diarrhea issues continued after the surgery.


Photo above courtesy of Joe Lanman on Flickr

Fast forward to the year 2000. I began having cyclical rectal bleeding. The rectal bleeding was the exact same every month. It would begin exactly 2 days before my period and would continue throughout my period. At this point I should note that I know of other endometriosis patients who have this exact same thing happen… rectal bleeding that starts precisely 2 days before the period and continues throughout.

So in 2000 I went to a gastroenterologist to get checked out for the cyclical rectal bleeding. Let’s just say this doctor was spectacularly unhelpful. (I no longer lived in the city where I’d had my hemicolectomy so I was just going to the doctor I’d been referred to). Anyway, this doctor was useless.

So I called my pelvic pain specialist’s office and asked them for a name. They gave me the name of another gastroenterologist. He is the one who did my 2001 colonoscopy and the one I had last week. I really like him.

Back in 2001 when I first saw him, he had done a colonoscopy to try to find a cause for the cyclical rectal bleeding. The colonoscopy was normal. My understanding is that gastroenterologists go into a colonoscopy looking for things like Crohn’s, colitis, diverticulitis, cancer, and polyps. Since I had none of those, he couldn’t really tell me why I was bleeding. Anyway the cyclical rectal bleeding finally stopped on its own after 18 months.

Fast forward to 2008. It was about 5 months ago (or so) that I started having the cyclical rectal bleeding again. Exactly as happened in 2000-2001, it starts 2 days before I get my period every single time.

Initially, I ignored it. I told myself it was endometriosis-related and I just needed to deal with it. Then in January, a new symptom kicked in: rectal blood clots. This scared me. It scared me enough to tell my primary care physician even though I did NOT want another colonoscopy and I KNEW she’d want me to see a gastroenterologist ASAP about getting a colonoscopy.

So I went in and saw the gastroenterologist for a consultation. He was VERY thorough! He asked lots of questions, he read through my paperwork (with my complicated medical history), he didn’t blow off my theory that the bleeding was somehow endometriosis-related, etc. He spent an enormous amount of time with me. He listened to my history with bowel preps – everything from profuse vomiting to fainting to passing 4 kidney stones in 2 days immediately after a bowel prep (citrate of magnesia). We discussed the various options for bowel preps. He actually listened to my concerns about various preps I’ve done in the past. (I’ve had 3 colonoscopies that required a prep plus 3 of my surgeries did too. So this was my 7th bowel prep).

As I blogged about previously (see related link at the end of this post), the prep I did this time was blue Gatorade, polyethylene glycol (known as Miralax), and dulcolax tablets. He skipped the citrate of magnesia that he would normally have had me do because of my history with it.

I have to say this is the best prep, of all 7 that I have done. I never fainted. I made it until late at night before vomiting came into play. Basically, I was doing so amazingly well (relative to other preps) that I decided to take some (not all) of my many medications. (I normally take most of my medications at night). Well, shortly after I took my medicine, I learned that they were not going to stay down and I shouldn’t have bothered. Taking my medicine was a big mistake because once I started vomiting, I was unable to stop until there was nothing left.

Once I finally stopped vomiting, I focused on getting to sleep. I had about 4 hours of sleep and then it was time to head for the hospital.

Long story short, they gave me the standard sedation medication for the colonoscopy but (for whatever reason) my body did not respond. I should emphasize that this is abnormal. I wouldn’t want someone to fear a needed colonoscopy because of what happened in my case. I have a history of unusual responses to anesthesia. In any event, I felt everything and it hurt. Once they saw I was in pain, they gave me more but it didn’t do anything.

I didn’t feel a thing in my 1993 or 2001 colonoscopies. The 1996 colonoscopy was really bad. This one was bad. The medication used for this was not the same as what they used in my really bad 1996 colonoscopy. So I don’t know why but the medication literally did nothing for me.

OK. The pictures are coming up. So here’s the picture warning…

I was awake the whole time watching everything on the screen. Thankfully it went fairly quickly. (It wasn’t as long as the 1996 one that also hurt). So they took me back to my little room and let my husband in. Then the doctor came to talk with me. He brought the pictures from my colonoscopy.

OK. What did he say, right? Well, he was very happy with how my colon looked in general. In other words, he liked how everything but what he called the “entry area” looked. Unsurprisingly, that area had bleeding. That begs the question… why?

Why the bleeding? That’s a very good question. Now, bear in mind that if a gastroenterologist isn’t looking at endometrial implants that have migrated through the intestinal wall, he/she isn’t going to say “it’s the endometriosis causing it” because he/she can’t see it. At the same time, this doctor was NOT dismissing my theory that it’s no coincidence that my rectal bleeding (and rectal blood clots) ALWAYS start precisely 2 days before my period. My theory is that it’s possibly either hormonal or immunological but somehow connected to endometriosis even if it’s not related to visible endometrial implants.

I have encountered several endometriosis patients over the years who have rectal bleeding symptoms cyclically like me. Whether doctors connect the two or not, I can’t help but think this is not a coincidence.

In any event, my gastroenterologist came about as close as he could have to agreeing with my theory. (I wish I had a videotape of the conversation because I can’t do it justice). My husband and I scratched notes right after he left of a phrase he used when we got to the point of discussing the bleeding. He indicated there may be “some sort of pressure phenomena” that is causing the bleeding. He absolutely understands this is cyclical. Think about it this way… Each month at period time, what happens? There’s inflammation. That inflammation could explain the “pressure” that he is tying to the bleeding. Once he brought up the phrase “some sort of pressure phenomena”, I was reminded that I also have pelvic congestion syndrome. (Yes, I have so many conditions that I forget some of them).

In any event, the colonoscopy itself (except for the unexpected pain part) went as I expected. I have believed all along that the cyclical nature of this bleeding is striking and that it was unlikely a colonoscopy would find one of those main things they look for.

I’m not a scientist or a doctor and I can’t prove that my cyclical rectal bleeding and blood clots are endometriosis-related. All I know is that no doctor can ever give me any other explanation when this happens and it’s ALWAYS cyclical. Whether it’s directly endo-related or somehow indirectly endo-related, I don’t know. Please note my blog’s disclaimer. I am not giving medical advice. I am saying that in my heart of hearts I do NOT think the timing of my bleeding is an accident.

Anyway, on to the “aftermath”. I was not expecting an aftermath. With my first 3 colonoscopies, I was fine afterwards. This time, I did not bounce back as quickly. The CO2 gas that is used during the colonoscopy gave me lots of trouble this time. My abdominal pain was INTENSE. Also the nausea was INTENSE. I have never had this happen before. It was not fun.

I’ve had CO2 gas pain post-laparoscopy that was really bad in my chest and shoulders. This CO2 gas was really bad in my whole abdominal area.

It was a little scary because I have never had this happen before and I couldn’t help but worry about why this time was different. It was the CO2. I started feeling human again yesterday. I never anticipated this. I don’t know if it’s relevant or not but I wonder if the gas was more of a problem due to the fact that my ileocecal valve was removed at the time of hemicolectomy. I really have no idea if that had any bearing or not.

Anyway, I apologize for the length of this post but I really felt that putting this colonoscopy in context with the others and with the hemicolectomy was important. At some point, someone may read this post and be going through something similar. So I think details matter in this case. I also wanted to be sure to mention (as I did earlier) that many illnesses commonly co-exist… such as IC, IBS, endo, fibro…

I think it’s so important to mention that because I know there are people out there who have multiple illnesses and don’t know anyone else who does. I think it’s very important for people to NOT feel alone and to get connected with others who understand what they are going through.

Related link:

“Jeanne’s Endo Blog”: My Gastroenterologist is a Genius!

This article was posted by Jeanne via “Jeanne’s Endo Blog” at www.endendoat.blogspot.com.


This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.


If you’re like me, you find online shopping a helpful alternative. Thank you for supporting my blog by using my Amazon ads. I appreciate your support! ;)

New to blog commenting? Just click “comments” below post. (If you set up a Gravatar, your picture will show when you comment).

Reading: Colonoscopy Results (With Pictures)

31 comments

1 Amanda { 04.09.09 at 7:37 pm }

I am so glad to hear that your prep went much better this time – I was thinking of you so much! Sorry to hear about the pain during the surgery and afterwards though and that you didn’t gt a conclusive answer (I know we often don’t get onclusive answers but we still hope for them!)

Take care of yourself xx

2 My Endo Journey { 04.10.09 at 12:09 am }

I’m so glad that you are feeling better. I cannot BELIEVE you were awake for the colonoscopy. Dude, you should get an award for that!!!!!!!

I had no idea they used CO2 for colonscopyies!!!

3 Jeanne { 04.10.09 at 1:10 am }

Yes, I am feeling human again. This was my 4th colonoscopy and I have actually been awake for all of them.

Everyone reacts differently to these medications. Some people are really out of it and can’t remember what happened.

Other people are awake the whole time like I was.

It’s not supposed to be painful (even for those awake enough to watch the whole thing) but I have weird reactions to medications. They gave me extra medication in the I.V. as soon as they saw that I was in pain but it didn’t do anything.

I expected to be awake (since I always am) but I didn’t expect to have pain. This was the same doctor who did the painless 2001 colonoscopy. I don’t get it. All I know is that I don’t always react to anesthesia as expected.

Yes, they use CO2. I saw my primary care physician today and she told me to call the gastroenterologist’s office to let them know about the CO2 aftereffects that I had.

She said that they have a method for sucking the CO2 out and that I should have them make a note in my chart so that they are sure to do so in the future.

Honestly, the first 3 colonoscopies I had were never like this afterwards. So I don’t know if they missed a step, didn’t suck the CO2 out thoroughly enough, or what.

Jeanne

4 Jeanne { 04.10.09 at 2:33 am }

Amanda,

Yes, the prep was better. No fainting and less vomiting. Relative to previous preps, this one was much better!

The pain after the procedure caught me off guard since my other 3 colonoscopies didn’t result in such pain and nausea afterwards. I’m just glad that’s behind me.

I really didn’t expect any magic answers. It went pretty much as I expected as far as “the results”. It was deja vu of my 2001 colonoscopy.

Thanks!

Jeanne xx

5 Yaya { 04.12.09 at 7:38 pm }

I’m glad you had a fairly quick recovery, otherwise who would I call with my crisis’?? Kidding.

This post was very informative. I had no idea things like blockages and twisting could even happen.

6 Jeanne { 04.12.09 at 7:52 pm }

Alicia,

I have a new appreciation for solid food. After about a week without it (which I know is nothing to some people), I am so glad to be back to eating the foods I’m used to eating. I actually got really weak.

I’ve lost 34 pounds in about 4 months (without trying). The last few pounds came off the week of the colonoscopy. I don’t mind losing weight because I had weight to spare but I don’t fully understand why I’ve lost it.

I truly have a new appreciation for food because the nausea afterwards this time was severe.

You’re funny. :)

Yes, blockages can happen for a number of reasons. In my case, the colorectal surgeon thought the malrotated colon was congenital.

However, we have two people right here in our local endometriosis support group who have had blockages due to endo.

One had a complete blockage which prompted emergency surgery. Her situation was very serious. She actually had to have a colostomy (which was later reversed).

Another local endo support group member just very recently had TWO emergency surgeries on her intestines! She had a number of partial obstructions prior to these surgeries.

They did a laparoscopy and removed massive adhesions. Then she had another (emergency) surgery done within about 2 weeks (!) because her intestines twisted over on top of themselves. :(

The good news is she’s doing OK now.

So that’s 3 people just in our small local group who have had either partial or complete bowel obstructions.

Truly, I have a new appreciation for food.

Jeanne

7 Jannie Funster { 04.13.09 at 3:39 am }

Thinking about you!

Not too late to get your wood order. :)

8 Jeanne { 04.13.09 at 3:52 am }

Jannie,

Thank you! :)

Now, as far as that firewood order (you know…. the free one), it’s currently 29.5 degrees Fahrenheit here. Now, I know for a former Canadian farm worker/lumberjack such as yourself that this might sound downright balmy. Nevertheless, the woodstove is burning brightly right now.

As you might imagine, we’re getting quite low on wood. I mean… for goodness sakes we’re halfway through April now.

So, let me know when you’ll be dropping off the wood because I’m looking forward to hearing you sing, play ukelele, and say silly things.

Readers, to see Jannie sing and say silly things, check out her blog. I’m not sure if she has played the ukelele on her blog as of yet but you can catch her singing about a ukelele.

Seriously, Jannie’s a talented somgwriter and singer. Check her out.

Here’s video of Jannie wowing the crowd. She’s so funny. :)

http://www.janniefunster.com/?p=5065

Jeanne

9 Jeanne { 04.13.09 at 3:55 am }

Jannie,

Oops! I spelled ukulele wrong above. I should have checked your blog for the correct spelling. (You know how I detest typos). :)

Jeanne

10 Parenthood For Me { 04.14.09 at 11:57 pm }

Hi. I just found your blog. I have severe endo with no other problem except infertility. I think what you are doing is great. I am now an adopitve mom who started the non profit Parenthood for Me.org. Stop by our website and blog. We need help spreading the word.
Thanks,
Erica

11 Jeanne { 04.15.09 at 2:15 am }

Erica,

Thank you for your comment!

I am familiar with your essay contests because I read about the first one on Kelly Damron’s “Twin Peas” blog and told my friend about it. (She ended up being a finalist on the first contest).

I had not taken a look at your site until just now. I took a peek at it but I’ll need to take a closer look for sure.

I have endo too. I think what you are doing is great… helping those struggling with the heartbreak of infertility. I think what you're doing is just wonderful. :)

I am afraid I'm all-too-familiar with the need for help "spreading the word" about different causes.

(Endo is just one of many things I blog about but since March was Endometriosis Awareness Month, we just pulled out all the stops for it and I am EXHAUSTED!)

We're still collecting signatures on the endo awareness petition, as endo awareness needs to take place year-round… not just in March.

Anyone can sign the petition (male, female, young, old…)

It's just a way to support endometriosis awareness & understanding. It's a tool for us to use when approaching the media to get endo FACTS published/aired.

Here's the endo petition:

http://www.gopetition.com/
petitions/endometriosis-awareness-understanding.html

Anyway, I will definitely take more time to look at your site. Thank you for stopping by! :) :)

Jeanne

P.S. I just read your comments more closely and realized that you have both a website and a blog. Wow! It looks like I have some reading to do. :)

12 Mckay K { 04.15.09 at 10:49 am }

Jeanne I am glad that part of the diagnosis is over. You have really been through some trying times with your colon.

This post is just what someone looking for colonoscopy help would pray that they found-very good detailed information from the patient.

13 Jeanne { 04.15.09 at 2:09 pm }

Mckay k,

Thank you. You always have something positive to say.

I was planning on blogging about it anyway but when the doctor gave me pictures this time (which never happened with previous colonoscopies), I decided it made sense to add them to the post.

By the way, I like your new picture. :)

Jeanne

14 lost butterfly { 05.21.09 at 12:09 pm }

Wow it must be dreadful to have to go through that several times. I would think that once is PLENTY. It sure is nasty having a chronic illness isn't it?! I am enjoying your blog immensely. You've done an amazing job with it, I only hope that one day my blog can come close to how well done yours is.
Take care,
Jeannette:>)

15 Jeanne { 05.21.09 at 12:42 pm }

Jeannette,

Well, let’s just say it wasn’t my favorite experience. :) I had put this one off as long as I dared and when symptoms escalated I decided I needed to let my doctor know (fully knowing what kind of a reaction that would get).

Yes, having a chronic illness can be nasty indeed. Having well over a dozen is especially fun, I have found. I try to look for the positive whereever I can.

I’m so glad you like my blog. Thank you! You are so sweet!

I look forward to checking yours out soon; I want to look at it when I can really take the time to look at it properly and I was up most of the night.

So I promised myself I would go back to bed now and get some more sleep before I get too awake because I’m really feeling lousy right now.

Take care,

Jeanne :)

P.S. I’m getting a new blog very soon to replace this one. So keep your eyes peeled for the switchover. I will be doing blog giveaway prizes too. :)

16 PoobaNo Gravatar { 01.26.10 at 12:38 am }

Very informative! My suggestion: watch DVDs on your laptop in the bathroom. I make my room the bathroom for the whole prep day, movies and all.

I have to have a colonoscopy every year. They totally suck and yes, they have been different every time for me too. Some I’ve been awake and felt it! Bad medicine! The one I had last week was one of the “pleasant” experiences. If you can call it pleasant. But I didn’t even throw up this time so that was awesome!

And I know you advised not to binge the night before but for me, I am too weak and “Faintish” (is that a word?) the next day if I don’t. I’m gonna spend the day on the toilet whether I eat the night before or not! LOL

Great post! Very informative for those who aren’t familiar with colonoscopies and the lovely diseases associated!

(I still need to go read that article you sent me! Looking forward to it, I need to catch up on all my emails!)
.-= Pooba´s last blog ..Pooba’s Guide To Surviving Your Colonoscopy =-.

17 JeanneNo Gravatar { 01.27.10 at 3:48 pm }

Pooba,

Well, now I know where you got your nickname – Poo… I mean Pooh… What’s that? PooBA?? Oh! Right. Sorry about that. (Sorry. I know that was probably lame humor but I couldn’t resist).

Now, on to business. Hmm. I seem to be somewhat of an oddity in that I blog from a PC rather than a laptop. (One blogger I know occasionally posts from her Blackberry). However, I shall keep your suggestion in mind so that the next colonoscopy I have I will be armed with my husband’s laptop and a wealth of DVDs. You’re right. DVDs can be watched in any room if you have a laptop. Why not pass the time faster? Smart thinking, Pooba!

I’m sorry you have them annually. That’s no fun. No wonder you’re so loaded with tips. Colonoscopies can be less than fun. ‘Tis true. But you do what you have to do! Right? Yes, I think you and I are considered “rare”… For most people, the anesthesia does its job. I don’t want to scare anybody out there. We’re rare. I’m sorry that you too have had the lovely experience of the anesthesia not working. That is wonderful that you did not vomit with your last colonoscopy. I maintain that my last one would have been the first one where I didn’t vomit IF I hadn’t been foolish enough to take my medication (non-prep meds) on prep night. That was a mistake. That was what started the vomit festival for me. This last prep was still the best one I’ve had out of 7 preps. (For whatever reason I was ill after this last colonoscopy in a way I never had been with the others).

Pooba, if you want “faintish” to be a word, then it is one. You see, you can now tell the world that you coined the term “faintish”. Someday, people will open their dictionaries and see “faintish” listed and it will be thanks to you. Anyway, I hear you on the “faintish” factor. This last prep was actually the first prep that did not result in any fainting for me. I fasted longer for this last one than any of the others. For me, bingeing before a prep would make me violently ill during the prep. (As in MORE violently ill than I would be otherwise). So, for me… bingeing would never work. I understand what you’re saying though.

Thank you. I thoroughly enjoyed your (much funnier) colonoscopy post too. You really went to town on that post.

I hope you enjoy the take on colonoscopies by humorist Dave Barry. (Readers, interested in reading Dave Barry’s article. Just click on Pooba’s link “Pooba’s Guide To Surviving Your Colonoscopy” at the end of this post (see the CommentLuv link). After reading her colonoscopy hilarity, scroll down to my blog comments (there are a couple) and look for the one that links to Dave Barry). Enjoy!

18 Fibromyalgia Flattened — ChronicHealing.com { 09.27.10 at 10:24 pm }

[...] bleeding that prompted colonoscopy number four in April 2009, which I wrote about previously here (Colonoscopy Results With Pictures) was worse than usual. (If you have cyclical rectal bleeding and your doctors tell you it is [...]

19 Melva SmithNo Gravatar { 11.10.10 at 6:09 pm }

Thanks so much for posting this information.

20 JeanneNo Gravatar { 11.10.10 at 6:14 pm }

Melva,

My pleasure! :)

Jeanne

21 Cosmic DancerNo Gravatar { 12.03.10 at 4:10 am }

This is so interesting, and I’m glad I found it! I have to say that I love coming across other women who advocate for themselves, as I do, even when their theories may seem far fetched.

I’m currently in the process of trying to sort out my own issues with rectal bleeding and endometriosis. The thing is, it’s been many years since I had a total abdominal hysterectomy with bilateral salpingo-oophorectomy at age 22. I had endometriosis, adenomyosis and endometritis; my surgeon spent HOURS in there after removing the organs to find and remove as many of the endometriosis growths as she possibly could. She withheld hormone replacement therapy for some time post-op so any remaining endo would die off.

But I’ve been plagued by abdominal pain, GI problems–diagnosed many years ago as IBS-D–rectal bleeding and, in more recent years, abdominal bloating. I’ve had test after test, including multiple colonoscopies and sigmoidoscopies, all of which came back negative.

Most recently, my now PROFUSE rectal bleeding has been blamed on a hemorrhoid seen at colonoscopy in 2008. But I don’t think so! A few days ago it hit me that the dull aching pain that’s gotten progressively worse, both in my abdomen and especially lower back, is reminiscent of one thing and one thing only–the pain my endometriosis caused way back when.

Then I started thinking about the spontaneous, profuse rectal bleeding I have, which is completely unrelated to bowel movements (I.e., cannot be blamed on constipation, etc.). I don’t know…everything just started to click, and I now believe that I’ve actually been dealing with recurrent endometriosis all these years, which is manifesting itself as abdominal and low back pain, abdominal distention, and very severe rectal bleeding.

I’m seeing my primary doc for a physical next month, and believe me this is going to be the #1 topic of discussion! I’m in no mood for any type of surgery, not even “minimally invasive” procedures like laparoscopy, to diagnose this, so I don’t know exactly how this will unfold. (I have a LONG, long history of illness and operations…so many I’ve lost count and can’t remember them all offhand, the most recent being a craniotomy to remove a brain tumor, so having anything else right now is just not going to happen.)

Again, I’m so glad to have come across this post in my quest for info on endometriosis-related rectal bleeding. It reinforces my hunch about what I’m actually dealing with. Thank you for posting it and for being so detail oriented. (I love that!)

22 JeanneNo Gravatar { 12.03.10 at 12:10 pm }

Welcome Cosmic Dancer!

Yes, it is so important for patients to advocate for themselves. It’s interesting to me that I’ve had doctors over the years who seem to think it’s far-fetched (my theory that my cyclical rectal bleeding is related to endometriosis). Yet, none of them offers a plausible explanation for what IS causing the cyclical rectal bleeding. My current cyclical rectal bleeding episode began in January 2009. It’s still happening with every period (generally, for me, the rectal bleeding precedes the vaginal bleeding by two days and the rectal bleeding continues during my period). So, this “episode” of recurrent rectal bleeding has been going on (cyclically) for just under two years.

Doctors I encounter use words like “rare” to describe endometriosis-related rectal bleeding and they all seem to have this idea stuck in their heads that endometriosis-related rectal bleeding is only ever associated with endometriosis that has invaded the intestinal wall. I am no doctor. Personally, I do NOT believe that endometriosis can only be associated with rectal bleeding IF endometriosis has invaded the bowel wall.

In the time I have written this blog (2.5 years) I have encountered MANY women who have endometriosis, whose endometriosis has NOT been found to invade the bowel wall and who DO have rectal bleeding that they attribute to endometriosis. The women I have spoken to generally have similar stories. Typically, their doctors have told them the connection between their rectal bleeding and their endometriosis is unlikely or non-existent. Yet they believe there is a connection (based on timing of symptoms, absence of any other plausible explanation, etc.)

For something that is supposedly “rare”, I sure have encountered many women who have both endometriosis and rectal bleeding! Personally, I don’t think this is anywhere near as “rare” as many doctors seem to think.

My gut feeling is that doctors are not taught in medical school about a connection between endometriosis and rectal bleeding (unless the patient has endometriosis invading the bowel wall). My gut feeling is that because this connection is not taught in medical schools and because this symptom may be less common than, say, abdominal/pelvic pain… and because a given doctor may not see a large number of patients in his/her practice presenting with this symptom, they may conclude it’s “rare” based on their training and personal observation.

Before I got connected with people online about endometriosis, I had encountered just 1-2 people with this symptom through (in person) endometriosis support groups. However, I have met far more women with this symptom since I have gotten connected online with endometriosis patients around the world. My personal opinion is that I have met too many endometriosis patients who have this symptom for it to be accurately called “rare”.

I understand that you had a TAH-BSO. Please forgive me for just a moment for getting into semantics but I don’t ever see the phrase “had endometriosis” without feeling some level of discomfort because there is no cure for endometriosis. So, even for patients fortunate enough to obtain a remission in their symptoms, I personally think referring to endometriosis in the past tense can imply that endometriosis can be “cured”… when there is no cure. I mention this only because I think referring to endometriosis in the past tense can cause confusion (especially for those contemplating having a hysterectomy and who are being led to believe – mistakenly – by their doctors that the hysterectomy will “cure” them of their endometriosis).

I’m sorry that you were diagnosed with adenomyosis and endometritis as well. My doctor told me after my 1996 laparotomy that I have a “large, boggy uterus” and “probable adenomyosis”. As you may know, adenomyosis can’t be definitively diagnosed without dissecting tissue from the uterine wall and this cannot be done without performing a hysterectomy.

It is great that your doctor worked so hard to remove any endometriosis she could and that she withheld hormones post-op so as not to trigger any remaining endometrial tissue. Unfortunately, even the most careful surgeon can miss endometrial implants. :(

Sadly, I have encountered many women who went on to have symptoms post-hysterectomy that were reminiscent of the endometriosis symptoms they had had before having it. I know what it’s like to have multiple GI tests, colonoscopies, and sigmoidoscopy that yield no answers. It’s incredibly frustrating. I’m so sorry for everything you’ve been through.

My rectal bleeding varies but there are times when it is profuse and it’s downright scary to me. Back in 2000 during my first (18 month) episode of cyclical rectal bleeding, the gastroenterologist I was seeing at the time (who, mind you, hadn’t so much as examined me) started blabbing to me about hemorrhoids about 60 seconds after meeting me for the first time. (I don’t see this doctor anymore). Anyway, he then left the room and the next thing I know this other guy came in. (It turns out he was a resident or something). Anyway, the “head doctor” didn’t even have the courtesy of introducing me to this guy. He just sent him in. So, the resident did an exam (looking for hemorrhoids) and couldn’t find any. He then excused himself and left the room. (He was really young-looking and came across as nervous. He was going to check with “the boss” about not having found the hemorrhoids that the doctor had apparently sent him in looking for).

In any event, the two of them came back in and the “head doctor” gave me this big speech about how people can have internal hemorrhoids that aren’t visible and how even though they couldn’t see hemorrhoids for me, that didn’t mean I didn’t have them, etc. He blabbed on about fissures and stuff. The bottom line was that he had mentally chalked up my rectal bleeding to hemorrhoids and the fact that none turned up did not deter him from blaming my bleeding on the non-existent hemorrhoids. (That was my last appointment there).

You described your pain as “reminiscent” of the endometriosis pain and that you’re wondering if you’ve been dealing with endometriosis pain for years. (Disclaimer: I am not a doctor and certainly can’t dispense medical advice). That said, it certainly sounds as if you are indeed potentially experiencing symptoms associated with endometriosis. Needless to say there are other possible explanations too and you need to discuss your situation with your doctor, like you said.

I understand your hesitance to have more surgery. I’m sorry you’ve had so many surgeries. It must have been scary to have a craniotomy to remove a brain tumor. I’m sorry you had to go through that.

I went through many years of “Traditional Western Medicine” (aka “drugs and surgery”) for my endometriosis. Over the years, I have learned more and more about alternative therapies. I have to say that I have found some really helpful things that I wish I’d tried sooner. Some examples would be acupuncture and homeopathy. There are other options available besides drugs and surgery.

Best of luck to you in your “quest for info”. One of the reason I wrote about rectal bleeding is that I know there are many women out there experiencing it (since I have talked with many of them) and being dismissed by their doctors. You’d be amazed at how many people find this post by Googling “rectal bleeding and endometriosis”. I know how validating it is for me when I meet people who have the same supposedly “rare” symptoms as me. When doctors dismiss it (generally across the board) while so many women are having it occur, I see that as a problem. I have no control over what doctors are taught in medical school or what they believe on this issue of endometriosis-associated rectal bleeding.

However, if women having this symptom can get connected with other women having it and if enough women start speaking up to their doctors about it, maybe someday women’s valid reports of rectal bleeding will be handled appropriately. I think the battery of tests typically run now for women with rectal bleeding are (1) doctors not knowing what else to do and (2) doctors wanting to cover themselves liability-wise (i.e. to rule out things like colon cancer). That’s all well and fine but I believe there should be something more. I do not believe women with rectal bleeding that is most likely associated with endometriosis should have to walk around worrying about things like, “do I have colon cancer?”

I wish you the best of luck and I truly hope your doctor can help you get to the bottom of things. If you haven’t investigated alternative medicine options, I can’t say enough for how much they have helped me. It sounds like your body has been through an awful lot. Your body might handle alternative modalities quite well. I have written posts (and made a video on) acupuncture. It has helped me so, so much. I cannot even tell you how much it has helped me with so many of my illnesses. It has been 10 years now that I have been getting regular acupuncture. I don’t know how I lived without it. It’s amazing!

I’m sorry for your pain. Hang in there!

Best wishes,

Jeanne

23 Cosmic DancerNo Gravatar { 12.03.10 at 7:38 pm }

Thanks for such a great reply. You have no idea how thrilled I am to have found you! BTW, I got here by Googling “cyclical rectal bleeding,” as I’ve now deduced that that’s the most likely culprit–despite having a TAH w/BSO years ago and, therefore, no “cycle” to speak of.

The more I think about it, the more convinced I am that my hunch is correct. Time will tell, but it’s the first thing that has TRULY made sense and explained some of the odd symptoms–like my distended abdomen–that have defied diagnosis for years. Think about it–if I have endometrioma bleeding in my abdomen, and there is no escape route (TAH), where’s it supposed to go?! Nowhere. Hence the ever increasing distention. I’m sure some of it is absorbed back into my body, but certainly not all of it. As for the rectal bleeding itself, let’s just say that your account of the “phantom hemorrhoid” exam made me roll my eyes in disgust.

Here’s my current GI doc situation: I moved back home to California four years ago, so I had to find all new doctors–not an easy task when you have a long, complicated medical history, AND have been looked at like you’re speaking Martian at numerous points over the years. I started seeing my mom’s primary care physician, not because I would’ve chosen her [necessarily] if I’d had the luxury of time, but because my mom loves her and I was in a crisis situation (out of control hypertension). My primary doc back in my former state [whom I adored], agreed to prescribe additional meds on an emergency basis, but only if I promised her that I’d IMMEDIATELY get under someone’s care here. So getting in to see my mom’s doc was easy, and that’s how that happened. I am less than thrilled with her, for a variety of reasons, but don’t want to make it sound like she’s not a competent, kind physician, so I’m just going to stop. Bottom line is that in 2008, after I’d become anemic for no apparent reason and knowing about the rectal bleeding, she sent me to a GI doc for the OH SO FAMILIAR battery of tests–and the inevitable conversation about hemorrhoids. Been there, done that. Ugh.

I liked the GI doc straight away–he’s very nice, very easy to talk to, I felt comfortable with him. He didn’t examine me that first day, but since I knew going in that we’d end up doing a workup, it didn’t matter; we scheduled a full upper and lower endoscopy. I LIKE being awake during procedures–and operations–if at all possible, and tried this time. Unfortunately, they started with the upper scoping…and after several minutes of gagging, gasping, coughing, retching…I gave in and they injected the meds into the IV, and that was that. When I woke up it was all over–and there were no signs of bleeding ANYWHERE in the GI tract he’d examined, either upper or lower. So, yet again, I’d gone through the awful prep [which I think is far worse than the tests themselves], anesthesia, upper endoscopy and colonoscopy only to hear “we can’t find anything wrong!” (I had had a full upper GI workup only 2 years earlier for a different issue; it turned out to be a benign duodenal lipoma.)

I was also seeing a rheumatologist (due to elevated sedimentation rate and other issues) and after the GI results she sent me to a hematologist to figure out the anemia issue. The hematologist INSISTED that my type of anemia had to be caused by internal bleeding. Period. I eventually let him and the gastroenterologist battle it out because I got sick of schlepping from one to the other, each saying they didn’t know why I was anemic but it HAD to be the other guy’s specialty. Bottom line: No cause of the anemia was found and I gave up seeing both of them.

Fast forward to last year when the rectal bleeding took on a life of its own. I’ve dealt with it for years…I mean years and years, dating back to my teens…but it was now profuse, and occurring spontaneously. Back I went to the GI doc, who did not examine me but instead pulled out pictures taken during the colonoscopy a year earlier, and pointed to a large internal hemorrhoid and said that was the cause of the bleeding. He prescribed Analpram, which I started using in conjunction with previously prescribed Anusol HC suppositories. The results were astonishing–and convincing. The bleeding started tapering off almost immediately, and by the next day it had stopped. Same results the next time I had a bleed. And the next.

I saw him for a followup 3 months later and, again, he did not examine me, but since the drugs were CLEARLY making the bleeding stop, it seemed pretty damn obvious that it was indeed hemorrhoidal bleeding.

A while later the bleeding got worse and wasn’t responding as well to the meds, so off I went for another visit with the GI doc, and again no examination; out came the colonoscopy pics and more “it’s the hemorrhoid causing the bleeding” discussion. He said he could refer me to a surgeon to discuss treatment options for the hemorrhoid, but I declined. (Keep in mind that I had a very traumatic, very difficult brain surgery last year–from which I’m still recovering–and seeing a surgeon just wasn’t something I was, or am right now, willing to do unless my life hangs in the balance.)

So that’s where we left it. He doesn’t know how much worse the bleeding has gotten because I haven’t bothered calling/seeing him. Once I started realizing that the bleeding and the dull aching, cramping pain in my abdomen and lower back, and the abdominal distention all suggested recurrent endometriosis, I decided there was no point seeing/talking to him right now. Note, however, that prior to the scopings, when I told him I wanted to be awake during the procedures, we did discuss post-abdominal surgery, post-endometriosis scarring and how that could make the colonoscopy difficult. So we have had some very limited discussion about my prior issue, but not as it relates to what I now believe to be the cause of the rectal bleeding. (Afterward he confirmed that colonoscopy was difficult.) However, I do NOT know–and will have to check in with him at some point–if he saw any indication of endometriosis invading the GI tract. SEEMS obvious that he would’ve told me if he had, but you never know! So two priorities must be finding out if there are signs of endo in the gut, and if it’s possible to have severe rectal bleeding due to endo if it’s NOT invading the gut.

The latter, of course, leads me back to you! Based on your experience with the “rectal bleeding can be caused by endometriosis even if there is no obvious route/connection” theory, I’m not looking forward to getting started on this with my docs.

One great thing that happened because of my brain tumor was ending up with a new primary care physician. My brain surgery team included an internist who works with the neurosurgeons; they sent me to him pre-op for assessment and approval for surgery, and then he was part of the in-hospital team who cared for me, and then for followup care after release. Unfortunately I had a lot of complications, which meant I saw him a lot. Then, as a die-hard “I only have female primary care physicians [and gynecologists back in the day]” person, something weird happened. I liked him. A lot. He’s very thorough, and you can tell when you express something to him he’s actually listening, and you can see the wheels turning as he considers every detail, every medication, every…whatever.

So, recently, at a routine visit, I [rather surprisingly] heard myself ask if I could see him as my PCP, and he said yes. I’m really glad because he was there throughout the brain tumor/surgery phase of my life, and he knows its details, including post-op complications, like no other PCP could, and with his thoroughness I feel extremely confident and comfortable with him. Next month we’re doing a physical and, as I said in my OP, the rectal bleeding/recurrent endometriosis issue will definitely be topic #1.

I do not know how this will play out because I do *NOT* want any more surgery at this point [unless it's necessary...like, you know, a brain tumor or something]. So unless there’s a non-surgical method of DEFINITIVELY diagnosing endometriosis, I don’t know which direction this will go. I don’t know if he’ll be comfortable prescribing anti-endo meds without a definitive diagnosis. One thing’s for sure, though–SOMETHING needs to be done about the bleeding. I’m not kidding…right now it’s worse than I’ve ever seen and includes large, long clots, and it’s not responding to the meds.

I forgot to say something: I *DO* think the hemorrhoid has been responsible for some of my bleeding, hence its positive response to the medications in the past. But I think it’s pure coincidence that I have a hemorrhoid that bleeds occasionally AND something else, i.e., endometriosis-related rectal bleeding. Because the hemorrhoid has been seen, and because the bleeding has stopped after use of its prescriptions, it was easy to blame it and not consider anything else since nothing else [like colon cancer] has ever been found. I mean, seriously, WHO would think of recurrent endometriosis as the cause of rectal bleeding in a woman who had a TAH w/BSO more than 25 years ago?!

Jeanne, I’m sorry. I TRULY didn’t mean to start a blog of my own [here!] about this topic. :)

Oh, I fully understand your comment about not referring to endo in the past tense. It’s just that, for me, it’s been SO LONG since the suffering and misery (including nearly dying from bleeding out) that culminated with the hysterectomy, and the feeling that I had a new start and could get on living… I don’t know, it’s a little hard to explain. I ALWAYS knew there was the remote possibility that my surgeon missed some of the endometriosis in the abdomen, and even that it was possible [but extremely unlikely] that she could’ve left some ovarian tissue behind. So it’s not like I didn’t know the endo could “return” (so to speak), it’s just that it seemed so very unlikely. Plus, after being told OVER and OVER again for decades that I had IBS [and I did, chronic diarrhea for years up to the day of brain surgery last year...and then it stopped...inexplicably], and it was the cause of my abdominal pain, well, I just let it ride.
Meanwhile, I was inundated with an assortment of major illnesses, injuries, and operations, and each time that happened it took priority over my silly little IBS problem! But no longer. I want answers and I want them now. Well, next month, when I see my doc. :)

Thanks for your kind words about my history. It’s been difficult dealing with so much illness and so many operations. But I think I’ve found a kindred spirit around these parts…you’ve obviously been through a lot, too.

(I wrote this in an editor and then pasted it in, so if there’s any funky line wrapping, that’s why!)

24 JeanneNo Gravatar { 12.05.10 at 2:37 am }

Cosmic Dancer,

I am so thrilled you found me too! I saw that “cyclical rectal bleeding” had brought you to my blog. You’d be amazed how many people have reached this blog post with that or similar search phrases. Not everyone leaves comments. So, it’s impossible to know the “back story” for a person if they read and don’t leave a comment. My feeling is that the more people who experience this symptom and get connected with others going through similar experiences, the better. The vast majority of people I have encountered who have this symptom have been told by their doctors how “rare” it is. Let’s just say I have my doubts about how “rare” it is when so many people are Googling it and when I have encountered so many endometriosis patients in particular who have this symptom.

Yes, the cyclical nature of my rectal bleeding is part of why I made sure to word my post the way I did. I know how robots (for Google or other search engines) comb through blogs and I wanted to try to connect with other people about cyclical rectal bleeding because I just have a difficult time believing it is as “rare” as so many doctors say it is.

I have a close friend who had a hysterectomy in her mid 30s. Twenty years later, there are a number of symptoms (not rectal bleeding in her case) that she has tied to where she would have been at in her cycle. It’s more difficult to figure these things out when there is no obvious cycle to tie them to! However, her cycle used to be regular enough that she has been able to see a pattern between various symptoms that she has and whether she would have been having her period.

Obviously I would not want to say anything to steer you wrong and I cannot say for sure what is causing your symptoms. I understand why you have the suspicions you do, though.

I have another friend (also an endometriosis patient) who found that acupuncture is incredibly helpful for her distended abdomen. She had been alternating between pants of several different sizes based on where she was at in her cycle before she tried acupuncture.

My abdomen is always distended (even when I had lost a significant amount of weight) and I attribute it the the sheer number of abdominal surgeries I’ve had. Acupuncture is extremely helpful for many of my symptoms of many of my illnesses. Unfortunately, nothing seems to help my distended abdomen. It’s always that way.

If yours is distended cyclically, though, it’s possible that acupuncture might help you the way it helped my friend.

Yet another woman I know who had a hysterectomy and also had both ovaries removed was told by her doctor that it is possible for a small portion of an ovary to be left behind. (She was dismayed to be told by the gynecologic oncologist who performed her surgery – for what turned out to be endo and not cancer – that she is not immune from ovarian cancer simply because she has had her ovaries removed).

I am by no means qualified to say whether you could or couldn’t have an endometrioma when you’ve had both ovaries removed. I’ve never heard of it happening. Then again, I had never heard of the notion that one could have ovarian cancer after having both ovaries removed either. So, that would be something to ask your doctor(s) about.

You mentioned “ever increasing distention”. So, it keeps getting worse?

Yeah, the “phantom hemorrhoid” exam really boiled my blood. I was so desperate to get to the bottom of the cyclical rectal bleeding (no pun intended) that I even used the prescription cream those two gave me (the same one you mentioned) to see if it would help. In my case, it didn’t help at all. (This was no surprise to me since the prescription was to treat a hemorrhoid and I didn’t have one!) Anyway, after trying that prescription against my better judgment and getting no improvement, I called and canceled my follow-up appointment with that doctor who couldn’t even be troubled to introduce me to the resident who he was farming out my exam to!

Having done the “move and find all new doctors” routine, you have my sympathies. Anytime you have a team of specialists and have to move and start from scratch, it’s stressful!

This is especially true if you have a long, complicated history… like you said. Having been looked at like I’m speaking Martian many times over the years, I know EXACTLY what you are talking about there! Years ago (when I still lived with my parents), I “inherited” the primary care physician that they see. Oh dear. Let’s just say that it makes me cringe to know that they still see him and I quickly realized that he was NOT going to work for me at all. It sounds like you did what you had to do at the time.

Having had a crisis situation involving out of control hypertension myself awhile back, I totally get it. (I had two doctors trying to convince me to go to the ER. Fun times).

That’s good that your former PCP covered you for emergencies until you could get settled in your new state. (While it seems common-sense to do so, not all PCPs would… especially when multiple states are involved). I can’t blame your former PCP for emphasizing the need to find a PCP immediately in your new state either. Heaven knows what the liability laws are with these things nowadays.

I had a situation once (with a specialist rather than a PCP) where I had an urgent situation and settled for a doctor that could get me in faster. Long story short, I ended up firing that doc down the line (after I almost literally died while carefully following his instructions regarding a prescription… long story). Anyway, the doctor who I see in his place had a much longer wait at the time (before that emergency) and I simply couldn’t wait to get in (a different emergency was brewing). So, I reluctantly became his patient. It wasn’t until the emergency situation that nearly killed me that I fired him and got scheduled to see the doctor I had wanted in the first place. In that case, I had to get my PCP to agree to cover my medication in the time period in which I was waiting to get in with the second doctor. Thankfully, she agreed to do so. (I am grateful to her to this day for covering this gap because I don’t know what I would have done if she hadn’t).

Wow. If your rectal bleeding is severe enough to cause anemia that can be tied to internal bleeding, that sounds pretty severe. I have had plenty of times I’ve gotten anemic (whether from hemorrhaging vaginally with heavy periods, the rectal bleeding or both) but I’ve never been told that the anemia was such that it could point back to internal bleeding.

I’m glad you like the GI doc. I like being awake too. I much prefer seeing what they see than just hearing them describe it to me afterwards. If I can see it while they do it, all the better. Upper endoscopy is one of the only GI things I haven’t had done. I can see where it would be more difficult to have that done while awake. I’m sorry you had to experience the gagging, gasping, coughing, and retching. Anyway, of the 4 colonoscopies I have had done, 2 of them were done during times of many consecutive months of cyclical rectal bleeding. One of the two resulted in them saying everything was “normal”. Ugh. So, like you, I had gone through the awful prep (and that prep truly was awful) for nothing. Ugh. (The other of the 2 was the one this post is about… where the length of the colon looked good but there was blood seen in the “entry area”, as the gastroenterologist put it. Who knows if that colonoscopy had been done at some other point in my cycle if any blood at all would have shown up?

By the way, I agree with you about the preps being worse than the procedures. At least that was my experience for 6 of the 7 times I’ve had a prep. The last colonoscopy (the one this post is about) was one of the ones the anesthesia didn’t work properly. So, I can’t really say the prep was worse than the colonoscopy for that one because the anesthesia literally didn’t work for that one. (There was one other colonoscopy where the anesthesia had no effect but the prep for that one was so heinous that I’d put the misery ranking at a tie between the prep and the colonoscopy in that case). But I digress.

In addition to 4 colonoscopies, having to do bowel preps before some of my surgeries, and a sigmoidoscopy, I’ve had that delicious barium milkshake test (yum) which was part of either an upper GI or lower GI. I forget but I’ve had them both. One of the surgeries I had to do a bowel prep for was the 1996 laparotomy where a foot of my colon was removed.

Going through all of that to hear “we can’t find anything wrong!” is always fun. NOT! I’m so sorry. Being sick is bad enough. Being sick and having a pile of invasive tests only to be told “we can’t find anything wrong!” and know the the symptoms will likely persist is just not fun.

You mentioned duodenal lipoma. I, of course, felt compelled to immediately Google it. One of the links that came up was about “hemorrhagic duodenal lipoma”. Is it possible that this is a recurring issue for you? Did your doctor give you a follow-up schedule of some sort for the duodenal lipoma?

My hemicolectomy (bowel resection) was done because of a paraduodenal hernia/malrotated colon which was causing a partial intestinal blockage. In other words, my colon was twisted and that was creating problems.

I understand the duodenal lipoma was benign but could you have another one that is causing internal bleeding and/or rectal bleeding and/or anemia?

It sounds like you visit many of the same type specialists I do. (In my case, the rheumatologist was very nice and thorough. He was also candid with me – a quality I prize in physicians – that he couldn’t help me as I am contraindicated for the various medications he ordinarily would have liked to try for my fibromyalgia. I give him points for honesty and not wasting my gas money commuting to him or co-pay money seeing him when he can’t help me. He had done a pile of tests including ANA (which my primary keeps repeating). The neurologist I saw last week ordered a pile of tests and sed rate is on the list. I need to get to the lab for those tests. But I digress.

If the hematologist INSISTED that your type of anemia must be caused by internal bleeding and having him hash it out with the gastroenterologist got nowhere, I hate to say it but maybe it’s worth revisiting. I would think a hematologist would be a good one to make that determination. This is not to say anything against the gastroenterologist. It just sounds like it might be worth pursuing because it sounds like you’re losing a lot of blood. I totally understand getting exhausted shlepping back and forth. Much as you may have liked the GI doc before you ditched him, it sounds like he wasn’t on the same page with the hematologist. Maybe you can ask the hematologist if he/she can recommend a gastroenterologist he/she is accustomed to working with. Who knows? Doing that might enable the 2 docs to work as a team to get to the bottom of things rather than getting into a pass the buck situation. They are less likely to play pass the buck if they are colleagues who deal with each other often. (I never underestimate the power of assembling a team of docs who never know when they might randomly meet at a medical conference or at the local hospital. It’s harder for them to blow each other off that way).

I understand why you got frustrated and stopped seeing both of them. My concern is that they did not resolve the problem.

As far as the GI doc pulling out colonoscopy pics that sound like they were outdated (a year old, you said?), it’s too bad he couldn’t do an exam while you were right there in the office (in my humble opinion). Perhaps this goes back to my own experience with doctors wanting to “just blame hemorrhoids” (even if none existed, such as in my case). On the other hand, it’s great that the prescription helped so much (just too bad you suffered that year in between without the prescription that might have helped you).

Again, it’s great that the prescription helped but I always have some level of discomfort when specialists say, “come back in 3 months” and then AGAIN don’t do an exam. Heck, appointments like that (where I drive an hour each way to get there) leave me wishing we could have done a phone appointment! I’m joking. Sort of. Seriously, I don’t think that docs should go randomly prescribing things over the phone. I was injecting some gallows humor. But, in all reality… what can a non-exam appointment do that a phone consult could not? But I digress.

Could the prescription have worked WHEN it was the hemorrhoid causing the bleeding but now maybe something else (duodenal lipoma, endometriosis, who knows what?) is causing the bleeding and that might explain why the prescription isn’t working like it was?

This case of yet another appointment lacking an exam troubles me. WHO CARES about the hemorrhoid on some old film now (?) if it’s 2010 and the hemorrhoid prescription ISN’T doing the trick? Right? As far as him jumping from “not even examining you for 3 (or more) appointments in a row” to “I can refer you to a surgeon, [GRR] isn’t there any in between? I guess I just don’t get WHY he can’t give you an exam to evaluate your CURRENT state. Why go from one extreme to another (no exam/assume it’s that old hemorrhoid) to (“I can refer you to a surgeon”)? Sigh.

Discussing treatment options with a surgeon is all well and fine IF YOU EVEN STILL HAVE A HEMORRHOID. Seriously, did you say the film of it was from 2008?

Who could blame anyone who had a very traumatic, very difficult brain surgery last year for wanting to avoid more surgery unless absolutely necessary?

At the same time, internal bleeding isn’t something to mess with. (Thus what I said above about the hematologist/gastroenterologist teamwork approach).

I ***TOTALLY*** get not having any desire for surgery. I just want to make sure none of these doctors is missing something important.

While your symptoms COULD be associated with endometriosis, I just want to make sure that something else isn’t messed. Many illnesses can mimic endo.

I have a friend who had a colonoscopy (part-way) that had to be discontinued due to adhesions in her intestines blocking the scope. She then got a virtual colonoscopy. My understanding is the virtual colonoscopy is not as good as the regular one but it was the best they could do for her. My understanding is that insurance won’t cover virtual unless the doc proves the regular kind was impossible to perform (like with my friend).

In my opinion, gastroenterologists (generally speaking) tend to be woefully uninformed about endometriosis. I wonder how much (if any) training is given to gastroenterologists about endo in med school.

The gastro said your colonoscopy was difficult. Why? Adhesions? Do you have the report that was generated from that colonoscopy? It might be worth signing a quick release form on so you have it for your own records (especially if you contemplate switching gastroenterologists). I have learned to NEVER assume what doctors will/won’t reveal after a procedure or surgery. (I always get my operative report).

Even if he saw endo, the fact that he never mentioned it to you (when it’s important info for you to have if he saw any!) means he might not have documented it in the report and surely will have forgotten what he saw by now.

My personal belief is that it’s possible to have severe rectal bleeding associated with endo even if endometrial implants are NOT invading the gut.

I will be very interested to hear what you find out on the latter as this seems to be a relatively (or even completely) unexplored area among doctors/scientists.

I’m sorry it took a brain tumor for you to land a great PCP but I am very happy for you that you have found a PCP you really like.

Over the years, I have learned that I *MUST* see the doc best-qualified to see me REGARDLESS OF GENDER. I understand the desire to see female docs. Years ago, it became abundantly clear to me that my “female-only” criteria for docs to treat my endo was going to force me to move somewhere else.

It is awesome that your PCP knows all of the complications following your brain surgery. That is HUGE!

I totally understand not wanting more surgery. That’s where I’m at too. Like you, though, I realize that I would have to break my own rule for something potentially life-threatening.

With the endo, here’s the thing. You already were diagnosed with endometriosis years ago by a laparoscopy, right? So, no matter how much time has gone by, endo is an incurable condition. So, “re-diagnosing” endometriosis isn’t necessarily imperative in order to proceed with treating it as if it is. (Mind you, I am not prescribing medical advice and you need to discuss this with your doc/s). There is no non-surgical method of DEFINITIVELY diagnosing endometriosis. Then again, you’ve already been diagnosed with it.

What your doc is or isn’t comfortable prescribing is a whole different ball of wax.

Have you ever pursued alternative medicine options? I ask because homeopathy has helped me immensely with hemorrhaging and clots.

I agree the causes of your rectal bleeding could certainly be multi-factorial. Just because you’ve had a hemorrhoid respond to meds in the past doesn’t rule out other issues by any means. It is easy for docs to just chalk it all up to hemorrhoids. Thank heaven they haven’t found something like colon cancer.

While recurrent endometriosis as the cause of rectal bleeding in a woman who had a TAH w/BSO more than 25 years ago might not be the first thing to pop into doctors’ heads, it wouldn’t shock me.

Please don’t be sorry. You have a great deal to say about all of this and you never know who may read our discussion down the line and be helped by it. No worries!

If anyone can handle long blog comments, it’s me! I am infamous for leaving them myself.

Thank you for understanding that I wasn’t picking on you regarding the whole past tense use regarding endometriosis. I know it has been a long time for you and it’s natural that you think of it in past tense (even if you are now beginning to wondering if some of the things in the intervening years truly were endo-related). My feeling is that when people talk about endo in past tense online or in other public forums, that it can cause confusion in an era where there are endometriosis organizations that have claimed that endo is “cured” or “curable”. (I’ll leave it at that).

Also, I have IBS which began in 1992. So, I totally understand that too! (Though I am not going to try brain surgery to see if my diarrhea will stop).

Like you, I have been hammered with diagnoses of major illnesses and have had various injuries and operations. So, I *REALLY* get it.

Good for you for being determined to get answers. They may not happen overnight but it sounds like you have a plan.

No need to thank me. I can only imagine. Yes, kindred spirit sounds like a good word for it. Yes, I have been through a great deal (only some of which I’ve had the time/energy to write about on my blog).

No worries about line wrapping. The vast majority came through just right. There were a couple of paragraphs that got smooshed into each other. So, I just fixed the spacing with my editor to make it easier for people to read. (Don’t worry. I didn’t change a word of your message).

It was so nice to hear from you again! Please keep in touch! ;)

Jeanne

P.S. Please take a moment to sign the endometriosis awareness petition (top right corner of my blog). We just topped 700 signatures. Please share the link widely. ANYONE who supports endometriosis awareness can sign. (There is an optional spot for a comment next to the signature field).

25 JuleneNo Gravatar { 11.10.11 at 9:21 am }

Jeanne

Geez I thought I was the only one in the world with an embarrassing illness!!

I’ve had 2 laparoscopies years ago, but since then has been struggling with chronic diarrhea & IBS & HECTIC cramps whenever I eat. It’s now worsen’t to the point that my stomach starts to cramp before I’m done eating!! And it happens with every meal!

I want to book a colonoscopy but first needed to know a few things about it – cause the CO2 gas gave me 5 sleepless nights and pain in my shoulders & chest!

Julene

26 JeanneNo Gravatar { 11.10.11 at 11:14 am }

Welcome Julene!

Thank you for the feedback. It’s nice to “meet” you. No, you are most definitely not alone in having illnesses that can cause embarrassing symptoms.

I’m not sure what your doctor found during the laparoscopies (i.e. whether you were diagnosed with endometriosis or not)? I do know that many women with endometriosis also have IBS and other gastrointestinal issues. Diarrhea can be a symptom of endometriosis itself for some patients. I know firsthand what it’s like to start to feel sick during meals. It is not fun at all.

Having had 4 colonoscopies, I know exactly what you’re talking about with the CO2-related symptoms afterwards. Best of luck to you in sorting that out. I know it has been inconsistent for me from one colonoscopy to the next (as to how the CO2 would affect me). It has been quite unpredictable.

Thanks for taking the time to leave a comment. I hope that you can get some relief soon. I don’t know if you have tried any dietary changes or acupuncture but some people get relief from these things. Good luck!

Jeanne

27 JuleneNo Gravatar { 11.11.11 at 3:41 am }

With my first laparoscopy, my gyna found endometriosis on the back of my bladder and removed it, but with my second one he didn’t find anything and just said that the pain might be caused by my colon.

I’m really not sure what to do and have only read about colonoscopies. Is it worth it? Is that the only way to DEFINITELY find out what and where my problem with food is? Technology has improved a lot so I’m sure the treatments today are very effective… But I’m not responding to medicine anymore, and if I do, it’s only effective for a day or 2.

Is a colonoscopy painful afterwards? Except for the CO2 gas? Can you eat after that or how does it work with regards to diet?

I tend to get less diarrhea when I cut out sugar, dairy and starch, but there’s not much left to eat after that! I just want to live my life and have dinner parties with friends and eat out etc!!

28 JeanneNo Gravatar { 11.13.11 at 2:51 am }

Julene:

Before I reply to your blog comment, let me direct you to my disclaimer since I am not qualified to give medical advice.

As far as the fact that you were diagnosed with endometriosis in the first laparoscopy and that no additional endometriosis was found during the second laparoscopy, I can think of at least a couple of explanations for that:

1) It’s possible that the endometriosis truly was removed the first time around and that there wasn’t any to be removed at the time of the second surgery. There may be another cause for your ongoing symptoms (aside from endometriosis).

or

2) It’s possible that there was endometriosis present at the time of the second laparoscopy but that your surgeon didn’t find it or recognize it as such.

When I had my first laparoscopy and was diagnosed with endometriosis (by a doctor who considered himself well-versed about endometriosis… which I now know he wasn’t!), I continued to have symptoms. After a great deal of pain, grief, and stress plus a horrific trip to the emergency room (sent there by that doctor when he finally admitted he didn’t know what to do with me and didn’t have answers for me), I found a doctor much more familiar with endometriosis. Within just 7 days after my initial consultation with that specialist (and because I was so extremely ill), I had my second laparoscopy. (Bear in mind that the first doctor kept telling me he had just “cleaned me out” and that my symptoms “couldn’t be endometriosis”). Lo and behold, when the specialist performed my second laparoscopy (a mere 10 months after the first one that diagnosed endometriosis), he found endometriosis. Over the years, I have met many, many women (who do have endometriosis) who, like me, had been told their symptoms were not endometriosis but something else… only to find a short time later (via a different surgeon) that there most definitely was endometriosis.

To be clear, I am not suggesting for a moment that your symptoms are caused by endometriosis. Maybe they are and maybe they aren’t. Only by working in partnership with your health care provider(s) can you pinpoint what’s what. Can endometriosis itself cause gastrointestinal symptoms (including diarrhea)? Yes. Could those same symptoms be caused by something else? Yes. Many endometriosis patients have co-existing illnesses that cause intestinal symptoms.

I can’t recommend for or against a colonoscopy. That’s really something a patient needs to sort out with his/her doctor(s).

I can tell you that it has been my experience (having had 4 colonoscopies) that gastroenterologists tend to focus (during colonoscopy) on looking for things like polyps, tumors, Crohn’s, and colitis. The gastroenterologists I have encountered have little or no training regarding endometriosis. If an endometriosis patient were to have an obvious endometrial-like-tissue mass within the intestines, a biopsy of that tissue might be able to hone in on it (as being endometriosis). Most endometriosis patients I know tend to have GI symptoms without having endometriosis that has physically invaded the bowel wall. (Though I do know of a couple of exceptions). For me, the biggest value in having colonoscopies was getting the peace of mind that my chronic diarrhea and rectal bleeding were not caused by one of the things I mentioned above – especially cancer. (Since I had a tumor removed from my appendix years ago during a laparotomy, I can’t help but get a lit anxious when abnormal bleeding issues occur (such as cyclical rectal bleeding).

Problems digesting certain foods can be caused by a great many things. Crohn’s, colitis, inflammatory bowel disease, diverticulitis, and celiac disease are just a few examples of illnesses that can cause intestinal symptoms. Lactose intolerance can cause some people lots of grief too. Food allergies can be a big factor too. So, I don’t think anyone would argue that colonoscopies would be “the only way to definitely find out what and where your problem with food is”. However, having one could be important. Again, this is really something to discuss with your medical team.

Everyone is different. Some people recover very rapidly from a colonoscopy and others need more time. Even in the same person it can vary widely. I know it did for me (as I have written about on my blog). It’s hard to predict how one will respond afterwards but if you and your doctor deem it necessary to schedule a colonoscopy, any after-effects will likely be worth the peace of mind of knowing what is/isn’t going on.

It’s great that you’ve been able to identify foods that are triggers because this gives you the power to take steps to avoid them. I totally understand this may not be a fun to do. Eating restricted diets due to medical issues can be challenging and can impact one’s social life. At the same time, avoiding known trigger foods can prevent the discomfort, pain, and even embarrassment that can result when one eats trigger foods anyway and goes on to physically pay the price afterwards for doing so.

Believe me, I understand. We had a large get-together yesterday to celebrate a relative’s birthday. People had traveled from several states for this meal. I ordered carefully (not what I really wanted/skipping a big trigger food I like) so that I wouldn’t get really sick before we even left the restaurant. Once we drove back to a relative’s home after that meal out, I still ended up dealing with the consequences of eating that rich food (the most careful choice I could find on that menu). However, I avoided becoming ill while still at the restaurant (with all of the unwanted attention associated with vanishing to the rest room for a long time and without causing a backed up line in the rest room at the restaurant… which is always embarrassing).

I know it can be challenging and frustrating. The most important thing, in my mind, is to verify that there isn’t something else going on (besides endo) that’s causing symptoms. Once other things have been ruled out by a great doctor, it’s easier for me to have the peace of mind to move forward… informed.

As far as laparoscopies go (for future reference… should the need arise), I can’t emphasize enough the importance of having a doctor who really knows endo doing the surgery. (Some doctors talk a great talk about how well-qualified they are but words don’t always translate into results).

Jeanne

29 tmem62No Gravatar { 10.07.12 at 9:06 pm }

Jeanne -
I had part of my colon removed to polyps. Fortunately they were benign. That was back in May 2012 and I have been having diarrhea 5-10 a day no matter what I eat. A couple months into the diarrhea I contacted the nurse at my surgeons office and advised of symptoms and she said no need to worry. Well the diarrhea continues and I am very sick and weak. I was hoping you may have some input.

Thank You
Tina

30 JeanneNo Gravatar { 10.11.12 at 1:34 am }

Welcome tmem62!

I’m very sorry it took a few days for me to post your comment. I haven’t been online at all lately. I am afraid that I don’t have time to post a detailed response now (as I would like to) but I greatly appreciate your feedback and hope to post something more shortly. For now, I wanted to at least get your comment up.

I hope to reply in more detail as soon as possible. Thank you for your patience!

Jeanne

P.S. In the meantime, I would encourage you to push back on your doctor regarding your situation. The nurse may have dismissed it but you can always push to talk to or see the doctor himself/herself. I hope to elaborate in more detail as soon as possible but if that surgeon’s office keeps dismissing your concerns, you might want to search for another doctor in case there’s a wait to get in. A second opinion can’t hurt. I hope you feel better soon!! Keep pushing for answers. You deserve to be taken seriously. Please keep me posted if you learn anything new before I add to this reply. I’m sorry you are so ill. Best of luck!

31 JeanneNo Gravatar { 10.12.12 at 1:23 am }

tmem62 (a.k.a. Tina):

Picking up where I left off in the last comment, I’m glad that your polyps were benign but I certainly understand your concern about the symptoms you’re experiencing. (Before I continue, please see my blog’s disclaimer).

In any event, your symptoms strike me as worthy of evaluation. While the nurse has told you not to worry, it’s your body and I believe it’s important to listen to one’s own body (even if that means challenging medical professionals at times).

If it were me, I personally would call the office again and explain how your symptoms are affecting you (perhaps to a different staff member, if possible). If you can have the good fortune of getting phone contact with the surgeon, great. If not, I would try to get an appointment to see the surgeon as soon as possible.

If there’s a long wait to be seen, I would ask if they have a cancellation list. This can sometimes speed things up. If no one at that office is being responsive or seeming to take your symptoms seriously, I would seek a second opinion from another doctor.

Obviously, in a perfect world, it would be nice to be able to communicate with the surgeon who operated on you. If it were me, I would request my medical records (no matter what their response is going forward). It’s never a bad idea to have hard copies of one’s own records on hand. If you ever have to switch doctors or go for a second opinion, you’ll have those vital papers ready. Looking at them can sometimes be instructive too. Reading your records can trigger questions… and asking those questions can potentially increase your understanding.

I don’t know if you have colon cancer in your family but obviously that’s a factor worth discussing with your doctor(s) if you do. The 5-10 times a day is obviously not within the “normal” spectrum. I know what it’s like to have that happen and it’s not good.

So, I would encourage you to advocate for yourself… in this case by pushing back against the “don’t worry” brush-off. You have a right to question what you’re experiencing. Your doctors may not have any magic answers but I’m not a big fan of the “don’t worry” response when I raise a valid question/concern. I hope this helps… Please keep me posted!

Thank you for your comment and best of luck!

Jeanne

Leave a Comment

CommentLuv badge