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4/06/2009

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.

15 comments:

Amanda said...

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

My Endo Journey said...

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!!!

Jeanne said...

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

Jeanne said...

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

Yaya said...

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.

Jeanne said...

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

Jannie Funster said...

Thinking about you!

Not too late to get your wood order. :)

Jeanne said...

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

Jeanne said...

Jannie,

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

Jeanne

Parenthood For Me said...

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

Jeanne said...

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. :)

Mckay K said...

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.

Jeanne said...

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

lost butterfly said...

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:>)

Jeanne said...

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. :)

HAVE YOU SIGNED YET?? Please Sign Endometriosis Awareness Petition Below! Awareness YEAR-ROUND!