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J-Pouch or Perm Ileo?
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Date Joined Jan 2010
Total Posts : 12
Posted 3/15/2010 12:16 AM (GMT -6)
My wife has been suffering from UC since last 8 years.
Lucky for her, it's not as severe as many of the cases we read here on this forum.
The disease was mostly under control, but 3 years back she had a major flare up, with severe bleeding and bit of cramps.
She was prescribed steroids for almost 4 to 5 months, that brought her to remission, sort of.
But ever since, every 2 to 3 months, she had to restart steroids for about
a month because she would bleed again and cramps when passing stool.
3 months back she started bleeding again with loose motions (p.s. as usual the quantity of blood is not much, mostly mixed in stool, dark maroon color), but steroids didn't help this time and she even started loosing weight.
Before disease she weight 43 kgs, she is 4'11. At present she weights 37 kgs.
So she started onto ayurvedic treatment since last one month (piccha basti + other ayur meds), which brought the stool consistency back to normal, but she still bleeds everyday and her weight is still constant at 37 kgs. She also has to follow strict diet, prescribed by ayur doc.
But seeing not much improvement in bleeding, we are now thinking of going for surgery. Either j-pouch or permanent ileo bag.
The main reason is not that much of pain due to the disease, but she is just dying to eat good tasty food. She is too fed up of eating bland tasteless food. Ofcourse there are long term issues that may develop if she keeps bleeding daily, such as cancer, etc.
Your guidance needed:
We don't mind having permanent ileo bag for her, if that's comparatively less complicated and has less risk involved compared to J-Pouch.
1. How long does a J-Pouch generally last?
2. What sort of complications arise after J-Pouch?
3. Even if we ask doc to do J-Pouch, the doc first will do the surgery to have a temp ileo and allow the healing to happen for a couple of months. If we feel this temp ileo is ok to live with, can she just keep this temp ileo as perm ileo, without further surgery?
4. Can we go for perm ileo bag to begin with and then switch to J-Pouch after say 2 years, will the organs still work after that long period? or does j-pouch need to be formed within limited time period?
I am just trying to grasp on Pros and Cons of these 2 options, your valuable experienced inputs are very much appreciated.
Please help and thank you for reading our long post.
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Date Joined Feb 2006
Total Posts : 5692
Posted 3/15/2010 7:21 AM (GMT -6)
Either surgery, perm ileo, or jpouch, are good choices when one has refractive disease. I have a jpouch and had my surgery 9 years ago.
1. The jpouch will last your wife's lifetime. It is constructed out of a small portion of the small intestine.
2. There can be several complications of any surgery post surgery. I didn't have any complications but I think the most common is an ileus. An ileus can happen for any type of abdominal surgery.
3. Your wife can keep the temp ileo for several years but eventually she will want to have her anus sewn shut. A temp ileo allows waste to travel both out of the stoma and out of the anus. Most comes from the stoma but I'm sure she wouldn't want to have both for the rest of her life.
4. If your wife chooses a perm ileo she can never go back and try a jpouch. However, if she chooses a temp ileo she can proceed with a jpouch and if she doesn't like that she can revert back to a perm ileo.
Yes, there are pros and cons to each surgery and I think it's great you are doing the research!
dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
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Date Joined Nov 2007
Total Posts : 128
Posted 3/15/2010 8:30 AM (GMT -6)
I just wanted to point out that there are 2 different kinds of ileostomies. There is a loop ileostomy and an end ileostomy(permanent). It's common for those that have loop ileostomies to still pass stool through their rectum. But with an end ileostomy it's not very likely at all. You may pass mucous, but that's about
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