Re: IBS/adhesions/surgical outcomes-Tina

From: Christine M. Smith (
Sun Oct 17 12:27:57 1999

At Sat, 16 Oct 1999, Tina Shelby wrote: >
>Chris -
>Thanks - I'm glad I can help in some small way - by being able to share what
>I have learned - I feel like I am turning a negative experience into a
>something that can benifit others.
>When your GI specialist said you were letting him know it he was hurting you
>and gave you more meds - it is very possible that he was trying to get the
>colonscope to go around a curve/turn in your colon and was encountering a
>great deal of resistance. If adhesions had your bowel fixed then he had to
>push fairly hard to get around the corner - and will cause a fair amount of
>pain because the colon is not as flexable as it should be. His "fairly
>normal" comment may be eluding to the fact that procedure-wise it was a
>difficult case - more than likely from your colon being fixed and attached
>to other structures within the cavity. It might be worth-while for you to
>request a copy of his procedure report to see if he noted that it was a
>difficult procedure. The report will also document that the procedure was
>"essentially normal" but also address any out of the ordinary findings that
>would not necessarily be diagnostic. Most of the time you can get these
>records without the doc knowing about it because it is usually handled
>through the administrative staff. Also, many GI specialists will schedule
>extra time for the procedure if they know ahead of time that it is going to
>be difficult for them.
>It is very possible that the gi doc did not pick up on the abnormal location
>of your colon just using the scope. However, a barium enema would have
>picked up on it immediately. Basically - the scope really just picks up on
>abnormalities involving the inside of the colon wall that is visualized.
>Because the GI doc may not see 100% of the inner colon surface -
>abnormalities can be missed. And if something is causing problems on the
>outer colon wall - like adhesions - the scope will definitely not see them -
>and will be overlooked as a possible source of the pain. What we must keep
>in mind is that those of us who have pain assoicated with adhesions are in
>the minority. The gi doc may encounter a large number of patients who have
>fixed colons from adhesions but are not experiencing pain from them - so
>when they do encounter the rare instance when the adhesions are causing
>pain, they usually don't see the connection.
>As far as there being anything you can do ahead of time to find out if the
>colon is out of place - it would have to be a test that radiographically
>shows where the colon is in relationship to other organs in the abdominal
>cavity. This would include tests like a barium enema (yuk) or a CT scan.
>There is a fair amount of skill required by the doc to manuver around the
>colon when resistance is met but if the patient is properly sedated - they
>would not be aware of this.
>My experience with this comes from working for a GI specialist for > 2
>years. (Not to mention having had no less than 5 colonoscopys myself). I
>have not seen a case of Crohns disease without the presense of bloody
>diarrhea and colon wall abnormalities but have heard that it is possible.
>Cases like this are usually diagnosed because the colon biopsy showed the
>colon changes at the microscopic level - but are not yet visible to the
>human eye.
>Let me know if decide to get the procedure note - I would be interested in
>seeing what he documented vs what he told your husband.

\Hi Tina: I obtained all of my records after my second lap but seemed to have misplaced the letters sent to my pcp. I remember it though, and there was no mention of the difficulty of the colonoscopy in the letter. I don't believe it even said "essentially normal", just normal exam, good prep, etc. The written endoscopy report he gave me to take with me says "colon to TI (which I know is terminal ileum) negative. Negative exam". However, he told me verbally that I was "letting him know" it was painful and I was too wiped out at the time to know to ask him possible reasons for this and my husband wouldn't know what questions to ask. The last thing I remember is seeing the nurse with a black tube in her hand (I assume this was the colonoscope) and the end of the procedure someone saying "we're all done now." This was very disappointing because my husband had one and he told me it was going to be like a guided tour of my colon. He watched (with a weird detached feeling) his on the video screen with the doctor explaining everything he saw. There is the possiblity that this weird arrangement of my lower colon resulted from the first lap done 2 months after the colonosocpy but I don't think so because 1) I was told 20 years ago that I had what appeared to be massive adhsions on the left side of the pelvis, which is where your sigmoid colon is and 2) The gyn didn't lyse these adhesions he found in the left side of the pelvis at the first lap so I doubt he caused this to happen to my sigmoid colon. I know this is probably confusing but what I'm getting at is that I believe these adhesions were what was distorting my sigmoid colon at the time of the colonoscopy. When I had the second lap 8 months after the colonosocpy the surgeon told me that they didn't see the sigmoid colon's abnormal position until they lysed the adhesions on top of it (I asked him how the gyn could have missed this at the first lap. The surgeon told me the gyn probably didn't see it becuase he didn't remove the adhesions on top of the sigmoid colon) What you said about having pain from adhesions is the unusual reaction-this is why I believe that my pain is not caused by my adhesions, even though it looks like it should be. I had these adhesions 20 years ago and all of a sudden they cause pain? Doesn't make sense to me. But I got interested in this forum back when everyone thought my pain was from the adhesions, in case you are wondering why I am here. I got the example about the unusual presentation of crohn's from a case I saw at work. A woman came in one day, just couldn't stand the abdominal pain she'd been having for 6 months any longer. No nausea, vomiting, diarrhea, cramps,(that she admitted to anyway) just pain. The only finding was a positive occult blood. The doctors were sure she had a malignancy (she was 50 years old) They did a CT and it turned out to be crohn's of the jejeunem. When they do a colonscopy they can only look as far as the terminal ileum. The pain management doctor told me that when they do a lap they can "see" crohn's but I'm wondering if this is only in severe cases where there are abscesses/fistulas etc. within the abdominal cavity. I am sure there are mild cases that only affect the inside of the bowel. I have asked some doctors if a test could be done to see if my sigmoid colon is back in the wrong place. That was when the surgeon said it would probably only show something if I were totally obstructed. I would think the xray would show barium in a spot where you wouldn't expect to find it at that point of the exam. (such as a barium enema there would be barium way over on the right side long before it should be there, in my case.) In any case, should I need to have another colonoscopy I will definitely mention this (and they probably would refuse to do it) because I don't like the idea of them poking in the wrong direction! Sorry this is so long! But as I said, it's great having someone to talk to who knows the technicalities of this stuff with lots of experience. Thanks

Chris S.

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