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New to Forum ~ Daughter 19 dx w/UC ~2 week stint in hospital.

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Ulcerative Colitis
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Posted 10/1/2010 7:43 PM (GMT 0)
Cathy,
Thank you !!
Posted 10/1/2010 7:46 PM (GMT 0)

luv2ride said...
My sister who has the j-pouch says she has more frequent BMs but they take seconds and usually done simultaneously with peeing. No one would know she has it, except for the scars. Now I believe it can be done laparoscopically, 20 years ago when she had it, it was cut breast to pubic area. She has no regrets and has no restrictions at all. The only side effect she has had is pouchitis, for which she takes Flagyl when it flares up. A good website I found: http://ucstory.wordpress.com/

Pouchitis...would that be inflammation of the pouch? Is it painful for her ?
Posted 10/1/2010 7:50 PM (GMT 0)
I think it involves low fever, diarrhea, etc. It is not that uncommon and she gets it seldom and it's fixed with taking Flagyl (metronidazole) -

From mayo.com:Pouchitis can cause symptoms similar to ulcerative colitis, such as diarrhea, crampy abdominal pain, increased frequency of stool, bleeding, fever, dehydration and joint pain. The condition can usually be managed with a short course of antibiotics.

Thirty-two percent of patients with an ileoanal pouch have had at least one episode of pouchitis. This figure includes patients who have had the pouch anywhere from one year to 14 years. The longer the time since the pouch was created, the more likely that pouchitis will occur: 15 percent of patients will experience pouchitis at one year; 36 percent at five years; and 46 percent at 10 years. These statistics are roughly the same for patients who have Koch pouches.

There is a higher incidence of pouchitis in patients with immunologic skin disease, severe inflammatory joint disease, active smokers or those with a history of primary sclerosing.

Even people who develop pouchitis find that their quality of life is better than when they had ulcerative colitis. Only a small number of patients suffer from chronic pouchitis. In virtually all cases, the problem can be eliminated by converting to a standard ileostomy.

Read more at MayoClinic.com.
Posted 10/1/2010 7:54 PM (GMT 0)
Most people that get pouchitis will get it very infrequently (Suebear has had it once in 9 years) and it is almost always very easily treated with Flagyl. A smaller percentage of people get chronic pouchitis which is harder to deal with.
Posted 10/1/2010 8:26 PM (GMT 0)
A few things to think about: Has your daughter been tested for infection? Taking prednisone kills off the good flora in our gut and suppresses our immune system. It opens us up to infections both viral and bacterial. Has she tried going off the lialda? I the reason I ask is that I used Mesalamine enemas for about a year and then developed an intolerance to mesalamine. The enemas hurt, the orals make my UC worse. I would also say if the prednisone isn't helping this time you could ask to try a higher dose and then taper back down quickly. Also, it might be a good idea to taper down slower. A lot of people find 5 mg at a time or less works better for them. Might be worth a discussion with her doctor. Another thing that her doctor might be able to prescribe for her is bentyl, which helps with cramping. He might be more open to that then the vicodin. ;o(
Posted 10/4/2010 2:02 PM (GMT 0)

Ugh Just Ugh said...
A few things to think about: Has your daughter been tested for infection? Taking prednisone kills off the good flora in our gut and suppresses our immune system. It opens us up to infections both viral and bacterial. Has she tried going off the lialda? I the reason I ask is that I used Mesalamine enemas for about a year and then developed an intolerance to mesalamine. The enemas hurt, the orals make my UC worse. I would also say if the prednisone isn't helping this time you could ask to try a higher dose and then taper back down quickly. Also, it might be a good idea to taper down slower. A lot of people find 5 mg at a time or less works better for them. Might be worth a discussion with her doctor. Another thing that her doctor might be able to prescribe for her is bentyl, which helps with cramping. He might be more open to that then the vicodin. ;o(

Tested for infection ?  She's had blood work done. Endless amounts of blood taken while she was in the hospital.  They also did a stool culture.  I think they were testing for C. Diff.

 She hasn't gone off the Lialda.  She is taking 4 pills a day.

Bentyl was prescribed for her but it does absolutely nothing for her cramping.  She has also been prescribed donatal (sp?) and that doesn't help at all. Her cramping is really bad. Her belly spasms so much that you can see it through her shirt sometimes when she's lying down.  It's like an alien is living in her belly.

 

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