Finite Pouch

I am really sorry to hear about this. Have they offered you pouch advancement where they give you a mucosectomy and advance the pouch. I can relate to your experience as I have had chronic pouchitis and cuffitis and lots of pain etc for the three years since I have had the pouch. We have thrown a lot of drugs at it with entecort being the new one. My cuff hurt so bad yesterday I could not sit down and I am using pain meds too.

I am assuming you are young and healthy other than your pouch. Short of trying biologics which probably are not in your best interest if looking to start a famly, the ostomy may give you permanent relief. Best of luck. Keep us posted as I will also of my condition and future steps.

A mucosectomy is not an option unfortunately due to the severity of disease.

I am using Humira which is working great on the whole as I haven't had an abcess or external inflammation since.

Surgeon explained that Humira is masking what is going on inside.

Take care and keep us posted

Did you have the option for the mucosectomy prior to the way your cuff looks now? I am confused as my cuff was severely inflamed. My surgeon said it was an 8 out of 10 and I was still offered advancement. Can anything rectal help you at all? Also is Humera is controlling your symptoms and you have no visible inflammation (pouch or cuff), I am confused as to why recommendation for surgery.

I understand if the cancer concern is the reason for your surgery. How are your symptoms? When my cuff is that inflamed, I am in agony (repeat trips to bathroom, difficulty emptying, blood and severe anal pain). I am sorry for what you are going through.

I am also confused on the cutting of so much of your small bowel. Do you have symptoms above the pouch? How can leaving your cuff and pouch in result in having to remove so much small bowel you would need TPN? Does csncer of the pouch result in having to remove more bowel above it?

What I find odd about this surgery, is I never had severe inflammation in my rectum (none in the anal canal whatsoever) at all until they removed everything and left the cuff. Now the bulk of my agony is in the cuff and anal canal.

I am so sorry for your diagnosis and am assuming the underlying problem is cancer of some kind.

I'm also sure you are exploring options like freezing your sperm, like Lance Armstrong did. He fathered his children this way after his prostrate cancer. It's not always so easy for a woman to conceive. I was lucky to be a fertile in my 20's, as I had to have my equipment removed at 40. We never know, life has a way of messing up my plans anyway.

I am curious, did Humira or any biologic medications have anything to do with your diagnosis? (I too am a bit worried for myself as I have chronic cuffitis. I've never taken a biologic - yet.)

You, your fiance' & family are going through a difficult time and my thoughts are with you.