Hi. I had a colectomy, j pouch construction & loop ileostomy formation in July, 2014. It's been rough. For some reason I have severe pain between the evening and mid morning hours daily. Thru the day it abates. During the time it's severe, a combination if one Vicodin 5/325 & one 800 mg ibuprofen relieve it. My j pouch also leaks continuously even though it's not technically in use. My surgeon calls this diversion.
This week I had a flex sig to evaluate my pouch. The surgeon found a structure & manually dilated it. I bled & had severe pain for 2 days after. Now I am back to normal- as described above. I see him in the office next Friday. Then he wants to do a gastrograffin study too. All this delays my re attachment surgery.
I feel a little discouraged by it all- especially the chronic pain I have developed. My entire life I have never needed regular pain med use . The long term affects ( stomach ulcer, dependency) concern me.
Any advice & or encouragement would be appreciated. I also have a "bad ileostomy" according to the WOCNs here. Most have a he in the center like a donut. I guess mine fell so the whole is below & drains down ...so under my wafer it leaks & I have a constant raw, bloody, painful area right below my stoma despite lots of brainstorming & attempts to try different dressing products ...Sometimes it leaks & burns after each meal..,
I have 3 young children & am back home caring for them. My husband is loving & supportive ...but we feel weary & wonder-"Is there an end in sight?" I have read about a Koch pouch- it looks attractive to me. Sometimes I wonder if I should go for that instead of j ouch reattatchment?
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As for the pain meds.... I had to use them for a long time and am having to be weaned off them. But I needed them for all the pain. I also had a not so good experience with the surgery. Not like yours but painful for a long time.... You just had the surgery. It's major and now it takes a long time for your insides to do something it was not designed to do. Patience. It gets better. I never thought it would. But it is so slow in coming. Been 11 months since mine and I am still healing. Worst part is way behind me. Be strong. It does get better.
Thank you for the encouragement Richard. It really means a lot. I thought I might get more feedback from other j pouchers....every little bit helps as this whole journey can be a bit lonely
Where is the pain located?

Personally I had very bad back pain when I had the loop ileostomy. For me it was better in the morning and then as the day went on it got worse and worse until I went to sleep. I was prone to blockages as well so I couldn't/wouldn't take painkillers besides Tylenol, and I suffered a lot.

My surgeon said that it was because the loop ileostomy was placing a lot of tension on my intestine and once the ileostomy was reversed the pain would go away. He was right -- I haven't experienced that pain at all since my reversal surgery.

I don't think you should be at the point of giving up on the j-pouch yet. Most if not all of the issues you're experiencing now don't have to do with the j-pouch. I know it's frustrating but there is definitely a light at the end of the tunnel. Maybe if your gastrograffin study results are good your surgeon would do your reversal sooner? That's not unheard of for people who have "bad" stomas like yours.

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