rant/

I have been putting this off for 8 years...I need to go back to the ileostomy. I sleep so poorly at this point, and am so moody and depressed. During the surgery they damaged my sphincter. On top of that I have pouchitis (90% of the time since the surgery), and both internal and external hemorrhoids. I get up on average 3 to 4 times a night and spend the time before and after I get up in discomfort and pain. I am short tempered with my family and my wife, despite my best efforts (I was never like this before), and I miss being able to walk even short distances without the discomfort of becoming leaky. There are times in the middle of the night that I just can't take the pain and I have to break down and cry, primarily from the frustration. In 8 years I have only slept through the night twice (6 full hours), and usually only sleep a total combined 3 hours a night. Because of that, I feel like I have mentally been deteriorating for years. I have a hard time thinking of words, or even following my own train of thought. I don't want to be on long term antibiotics, constantly be trying to get rid of hemorrhoids, and looking for that magic mixture of immodium/lomotil and diet. I got this surgery so I would not have spend my days and night thinking about my jacked up digestive track, and now that is all I do. At least with colitis, there were months while I was hopped up on prednisone that I could conduct a relatively normal life. The ileostomy was a relief, and I wish I had stayed with it. Now I am worried that if I go in for this surgery to have the pouch removed, I will end up being impotent. I am 28 and trying to start a family....I watched my father go through a colectomy after I had mine (UC as well). They damaged him in the same way I fear to be damaged. I am at a crossroads, and I do not know what to do.

Cameron

/rant

I am sorry for your experience and it sounds as if you have made your mind up. Quality of life is paramount; if an ostomy will give that to you then pursue it.

Sue

Cameron,
Can you look into the possiblity of a K or T pouch?
They are viable options for a good quality of life..check out the k pouch forum here and ask questions...then speak with your surgeon to see if you qualify..there is also the BCIR which is a modified version of the k pouch. They are all internal and give you a sense of freedom that some people prefer over the outside ileo.
Don't give up hope. There are always options.
Sharon

Hi Cameron,
I don't know where you live and what your financial situation is but I recommend taking a trip to the Cleveland Clinic.

They pioneered the J-Pouch surgery and the surgeon who created it works directly with all the Drs there. They are also a leader in the field of dealing and treating pouchitis. I did a consult in Cleveland and was incredibly impressed. I just had the surgery 3 weeks ago. I had my surgery in Cincinnati because of convenience and I found a remarkable surgeon who several doctors told me they would let do their surgery if they needed it. I will go back to Cleveland if I have problems with pouchitis.

Cameron, you have a full life ahead of you and you are very afraid with good reason. You owe it to yourself and your family to seek out the finest care out there regardless of the cost. I spoke with seven doctors before my surgery and they all say Cleveland Clinic is the absolute best in the country for J-Pouch surgery and its complications. I'm sure they are also experienced with sphincter problems as that goes along with the rest.

I'll pray for you!

Kim

Kim - who was your surgeon in Cincinnati? Was it Dr. Joyce Rafferty? I saw her on consult before I was sent to CC. I'm just curious as I live closer to Cincinnat than Cleveland...LOTS CLOSER!!!