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13 replies

HELP!!

Mema 1Mema 1Member
Getting so discouraged and I don't know what to do. Hoping maybe Jan will be able to direct me in the right direction. Please read Crohn's plus GI doctor to start, so that I won't have to go over the same things again.

I've been on entocort and was really feeling pretty good for the first few days. However,
last night I felt the same uncomfortable feeling in my stomach like the beginning of a blockage. So, rather than to make matters worse, did not eat anything and just had liquids.

Moving on to today - I felt better this morning and had breakfast, but never had time for lunch, too busy at work.

This evening had dinner and ate lightly - the uncomfortable feeling started within a few minutes and within an hour or so the sharp pains started. I know that I am not emptying my pouch completely when I go and with the entocort, it seems to making it even harder to go.

I'm at my wits end and don't know which way to turn anymore. I don't know whether or not to contact my surgeon and/or my GI doctor.

I had a pretty stressful day at work, and have been trying to take myself off Librax since I'm on so many meds, it's ridiculous. I'm not sure if that's the problem with the sharp pains or not, and of course, since no one seems to be able to give me a diagnosis of what my problem is I'm quite concerned.

Scott suggested that perhaps it's backwash Ileitus and I know that I'm not emptying my pouch completely so I will most likely mention this to the doctor.

Jan, what does this sound like to you. You're always so right on the money, and I'm so down at the moment. Any suggestions?
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J jeaneMember
Can you try a squirt bottle like the old plastic ketchup (picnic condiments) bottles you can buy at the grocery store and fill it with lukewarm water and squirt up into the anal cabal after emptying? This always helps me release the remainder of what's in my pouch when my stricture at the anastomosis acts up. If this is not helping you may be feeling like you are not completely emptying from the possible narrowing above the pouch. I would call your GI and not hesitate on this. In the meantime a hot hearing pad may help with discomfort.
Jan DollarJan DollarModerator, RN, retired
I wish I had some special insight for you. However, your symptoms seem consistent with active Crohn's to me. You probably have overlapping issues in addition, such as adhesions, motility issues, and/or pelvic floor dysfunction.

Crampy abdominal pain is fairly typical of Crohn's. With the amount of inflammation you have beyond the pouch without a history of NSAID use, Crohn's is the main suspect. Hopefully, you can get some other medication for maintenance and get off the Entocort eventually, but worry about that later.

I'll be deleting your duplicate post in the other forum, so all replies can be in one place.

Jan Smiler
Mema 1Mema 1Member
Thanks, Jan, although I was hoping for another answer. I just don't understand why they're still saying that it looks like Crohn's but don't feel that it is. I do appreciate answering me though. I will be calling the doctor today to see what he thinks I should do from this point on. Funny, after finally be able to empty my pouch last night, I feel perfectly fine this morning. I just don't get it. Kind of makes me afraid to eat though, then we start all over again.
Mema 1Mema 1Member
I'm calling the doctor shortly and will be asking him these questions. I just cant' believe that if it is Crohn's why they don't say it is. I'm not even sure that the doctor would know what backwash Ileitis is, but I'm sure going to speak to him about it.

As far as the Librax goes, these pains were the reason that I started the Librax a number of years ago, and I haven't stopped it completely but have cut down considerably. Hopefully that's the answer.

Thanks,Scott!
Mema 1Mema 1Member
Just spoke to the doctor who said that he did not feel that I had Crohn's but was not sure what the ulcers were. He said that he had at least 3 patients with the same ulcers and he was unsure of what they were as well. He's hoping that the Entocort will heal them. I have to drop down to two pills next month and then again to one the following month.

He felt because the ulcers went far up the intestine he did not think that it could be backwash.

He had no problem with the Librax and said that I should stay on them since they were an anti-spasmodic, so that's what I'll do.

He did not feel that I should be on a low residue diet (thank goodness) I'm barely eating anything as it is and losing weight quickly. He said to make sure that I chew everything well, which I usually do and I always have gallons of water at each meal. I guess sometimes I'm a little lax and perhaps that's when I get the crampy feeling.

As far as my being unable to empty my pouch, he does not know the reason for that, so I will email my surgeon on Monday and grill him on a few things.

Thanks for all of your help. I feel great today, so will try to take each day as it comes and pray for the best.
Jan DollarJan DollarModerator, RN, retired
My recollection is that backwash ileitis is associated with UC, not pouchitis, and it only involves a short segment contiguous with the colon. Crohn's is very difficult to diagnose, as there are only a couple of definitive findings that clinch a diagnosis.

Realistically, it does not matter what the name of this ileitis is, but what treatment is effective.

Being on low residue can worsen emptying problems, because you are deprived of the necessary bulk to keep things moving.

If you want to delete or edit a post, click on the eraser/file folder icon in the lower right of your post. I don't think you can delete a post if it is a topic starter though. I was able to delete it for you.

Jan Smiler
Mema 1Mema 1Member
Thanks, Jan, and that's what he thought that the ulcers may be, UC. Can you have UC of the small intestine too? Hopefully the entocort will work.

He said that I had a very small amount of pouchitis but not much.

I misread your message this morning at 5am. I thought you wanted me to delete the topic starter - that's what I didn't know how to do. still had my eyes closed, and couldn't sleep. Thanks for doing it for me.
Jan DollarJan DollarModerator, RN, retired
There is much controversy/contradiction regarding small bowel involvement post colectomy for UC. Some consider it always to be Crohn's that was previously undiagnosed. If it is only in the pouch, Crohn's is less suspect. But, if the inflammation (including ulcers) are well beyond the pouch, Crohn's becomes more likely, barring other causes, such as NSAIDs, bacterial infection, celiac disease, etc.

The sad truth is that they can't tell just by looking at it. Even biopsies and serologies are not conclusive in most cases. But, UC or Crohn's, the treatment is mostly the same, so try not to get too hung up on the diagnosis. A Crohn's diagnosis does not mean that you lose the pouch (even if it increases the risk).

Jan Smiler

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