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Crohn's Disease
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Posted 8/17/2008 9:09 PM (GMT 0)

Hello everyone,

I'm scd, new to the forum. I am game to share any experiences of my own that might be helpful or enlightening, and hope to gain from yours as well.

 I'm currently in 'remission' from Crohn's disease after a surgery last June, but a year later am still having no luck controlling post-surgical diarrhea, which has really hampered my day-to-day living. (I am lucky to be working at home-- teaching online has been the best solution).

Unfortunately, a valve damming back excess water had to be removed during the surgery to excise some inflamed small intestine. I have had nearly constant diarrhea since. Neither Cholestyramine powder, nor Lonox taken in conjunction with Immodium AD have had any effect.

 My doctor now suggests that "tincture of opium" (how 19th century is that!) might be the best course of action to try and calm down the intestinal movement, and therefore, slow the big "D."

I'm looking to hear from folk who have Crohn's (not IBS) who have surgical-related "D." Has anyone found relief with tincture of opium, or any other method/agent? Thanks! scd

Posted 8/17/2008 9:26 PM (GMT 0)
Well I think it is logical that about any opiate will more than likely slow down your guts.
Posted 8/18/2008 12:08 AM (GMT 0)
Hi scd,
I suffer with dramatic diarrhea, more so following surgery. I was also given tincture of opium with belladonna. Unfortunately it disagreed
with me & I had to stop taking it. It did work though, (probably too well)
I wish you luck.
Posted 8/18/2008 2:34 AM (GMT 0)
I have the same problem. Some days are worse than others but I can pretty much figure that I will have explosive diarrhea within 15minutes of eating.  Some days I barely make it to a bathroom, there is no warning that it is about to happen.  I've not found anything that helps much.  Immodium makes my stomach cramp, the poo wants out and the immodium stops it and I get miserable.

Posted 8/18/2008 7:16 AM (GMT 0)
it worked for me many many years ago, but i could not stand the taste.
Posted 8/18/2008 7:13 PM (GMT 0)
 

Thanks everyone for your replies! I'm afraid that the tincture of opium sounds like it could be overwhelming, though effective. Crohn's has already taken a toll on my mind as well as body; I have gone through over thirteen years of school, and at this point am at risk of failing to write my dissertation and get that final degree.

 I need all my faculties together in order to get enough progress done on my project so that they'll give me an extension and I have a chance at finishing. I'm afraid that opiates, while calming my nerves, will certainly result in an even more difficult time focusing on reading and writing...

At the same time, I just want the relief... so tired of worrying about the closest bathroom. Sometimes I can sweat it out and hold it, quell the impulses--not sure how I'm able to do that at all after this last surgery, except by sheer force of will...

Anyway, I'm curious to know how many of us with currently controlled inflammation suffer from uncontrollable diarrhea, and why.

I'm sure many of us have had multiple surgeries, resulting in compromised 'plumbing,' and doctors seem to have only two suggestions: try to soak up excess water with something like cholestyramine, or relax the muscles to slow peristalsis.

If only there were a surgery to reinstate some kind of valve action to help regulate water absorption...

 If my research brings anything up by way of an alternative to powders or opiate-based relaxants, I'll be sure to report back. 

Posted 8/18/2008 11:14 PM (GMT 0)
scd how high of a doseage is your dr talking about? I would not think he would give you a high dose that would affect you in the way you are talking. I would first clear this up with him.

I am the queen of the runs, worse after a resection 6 yrs ago. I have a pain pump implanted and even the drugs in it does not slow it down. My gi & I both had hopes this would help with that problem, but that was not the case. Susie
Posted 8/18/2008 11:31 PM (GMT 0)

Hi Susie,

Thanks for the suggestion--Dr. and I have not yet discussed dosage since he first wants another colonoscopy to ensure first that I haven't relapsed since resection last July. It was presented as the 'next step,' once we determine that I'm still in remission. I think we both know that I am still in remission, but that's fine to cover the bases.

If anyone has any clue about dosing with tincture of opium, my ears are open.

I'm so sorry to hear that the pain pump isn't working. It must be hell. I can't believe how differently people respond to the same treatments/procedures. Would that modern medicine could recognize this, and that even HMO doctors could treat us as the individuals we are...

Suzanne

Posted 8/19/2008 12:35 AM (GMT 0)
SCD, well i have short bowel syndrome from having only about 2 ft of guts left. i go pretty much all day and sometimes a good part of the night. it doesnt reall bother me too much anymore. i would stay away from sugary liquids, soda, etc... that seems to hit me the hardest but they are sooooo goood! sometimes it takes more than a year for your body to readapt to the missing parts. it has happened to me in the past.

when i did the opium, it was about 1cc at a time. i put it in a syringe and squirted it in the back of my throat. try not to get it on your tongue. its very bitter. it is such a small amout it does not really afffect your head. to me it seemed like it was the coating action on the guts that did the trick like medicating the guts instead of the head. i think thats why its a liquid instead of a pill. could be wrong though.
Posted 8/19/2008 3:28 AM (GMT 0)

randynoguts,

thanks for the tip on the opium. I believe the opium is liquid so that it is fast-acting--hopefully faster-acting than the problem! Doc used to talk about the body adapting to the missing parts after surgery, and my body did adapt until this last one. This year has brought not much change for this shorter bowel.

So far I'm getting the impression that while some object to the taste of the liquid opium, the stuff does work...am waiting to hear back from a couple of physician's assistants in the family on that and some other issues. Will report here in case anyone is interested. Have a peaceful night.

scd

Posted 8/20/2008 1:38 AM (GMT 0)
I have a similar problem being a fountain of bile as my gall bladder is gone and my terminal ileaum both of which hold back bile.  Fortunately this has adjusted for me somewhat.  My doctor and I looked up possible foods that might work as Questran made me really gassy...too gassy. (and my GI is also a pharmacologist)  The answer was rice bran...you can order it on line at Bob's Red Mill or get it at a organic type grocery store.  This was still not an answer for me cause although it soaked up the excess it was still bran and I was going a lot...but going solid at least. It might be the answer for you. (One intorerable side effect for one is a tolerable side effect for another).  One muffin in the morning helps soak up excess intestinal fluids.  I am still going to try moving down the line as wheat bran is the next effective and oat bran is 3rd so you can kinda play around with a "dosage" that works for you.  It's worth a shot anyway.  It hasn't bothered me enough lately to mess with it at the moment but when it does I'm on to trying the wheat bran.
Posted 8/20/2008 3:15 AM (GMT 0)
Hi,
I have had the same problem as you since my smll bowel resection this past May.I mentioned it to my family practice Doctor and he gave me samples of Welchol,the product is very effective and with no side effects to me,he prescribed 1 tablet 3 times a day and said I could go as high as 2 tabs 3 times a day.The 1 tablet with each meal has done he trick.

Also a friend of mine`s mother has had the same problem for over a month and had lost 13 pounds,I suggested the Welchol and her Doctor prescribed it, and within 2 days it cleared her up.Hope this helps.
Michael
Posted 8/20/2008 2:03 PM (GMT 0)
I had fair amount of D after my second resection. Believe it or not, I starting taking Probiotics and now I only go 1-2 times a day. Just a thought.
Posted 8/20/2008 3:01 PM (GMT 0)
SCD,
You got a lot of good suggestions--I'm going to add my thoughts. My understanding is that in a healthy person, bile is reabsorbed from the ileum and transported back to the liver. When the ileum is removed bile will enter the large intestine and cause "cleansing". (One cause of D in many people after resection.) In another century, bile salts were used for that purpose. Cholestyramine will combine with the bile to form a complex that will remove the bile safely--no D. You might want to consider trying Cholest. again as your healing progresses. I use a small amount, perhaps a teaspoon which is not as irritating as the prescribed amount. (Incidentally the prescribed amount is for the purpose of lowering one's cholesterol, the original purpose of the drug. C is a side effect). I've had 3 resections and it works well, almost magically for me. It might be worth another try down the road of healing. Might or might not work. Just a thought.
Moodindigo.
Posted 8/20/2008 6:22 PM (GMT 0)

Hi everyone,

Again, thanks for the wealth of tips!

Nanners, I'm glad to see that probiotics work for you. I've taken them for years, but unfortunately, they don't address this particular issue.

Moodindigo, I'm glad the cholestyramine works for you. Some months after the surgery, the cleansing action actually increased the D, but you do make a point about trying again now, a year later, and doing only a teaspoon dose. Speaking of thought in previous centuries, I always thought I was a more melancholic character than a bilious, but what can you do smilewinkgrin

Ouchbelly, it looks like we are on the same oceanliner. I'm a big fan of Bob's Red Mill products anyway, so I'll try that after giving Moodindigo's a bit of time. I tend to go way too gassy with such purposeful fiber intake, but we'll see. I'd love things to both calm and solidify again--have forgotten what that kind of trip to the restroom is like.

Michael, Welchol sounds like cholestyramine in a pill form. I'm going to ask my doctor about all of these suggestions, of course.

Thanks again, everyone! It is great to make tracks on the problem, and I will report back on anything I'm looking into. Have a peaceful late-summer day.

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