Surgery

the temp-ileostomy in a 2-step gives you a chance to trial the stoma (thats wat oz medics call bags) before the j-pouch is attached so you can get an idea of what it is like. some patients actually go back to an ileostomy!

Suebear you forgot C. you aren't sick anymore - which means you can potentially have as much energy as you had before the disease. you will probably feel great! and just remember the visits to the toilet can be planned in advance! thats gotta be worth something.

the CR surgeon I saw said that the people who adapt best are the ones who feel they have tried everything. i guess thats because you aren't continually wondering if you did the right thing. but i think he said that most of the patients who had 'early' surgery were forced into it by some sort of emergency.

Bennie, I see. And ya 40-50 times is horrendous. I think I hit 30 last week during a crazy out of no where spike, but before then it was 20 as the spike max. On the day I hit 30, I spent the better part of 24 hours in the shower - you can't wipe any longer because it hurts so bad. I can't imagine what she went through.

It sounds like she is doing well at the moment though. I am glad her quality of life is improving. I hope the next surgery goes very well.

A jpouch empties as a rectum does; using your sphincters for control. There are no man-made parts. The jpouch is made using 9-12 inches of small intestine and creating a false rectum with it and attaching to 1-2cm of retained rectal cuff. As with a rectum/colon your body signals when it's ready to be emptied.

No one knew I had a temp ostomy. It was not obvious under my clothing.

Sue

From what I understand, people with UC get their entire colons removed b/c there's a good chance that the part of the colon that isn't inflamed will become inflamed later on. The right side and part of the transverse part of my colon are not inflamed, but when I talked to the surgeon, there was no talk of leaving those parts in.

:(

That is disheartening.

I suppose that is a consolation. I just hope the remicade works. Or Acupuncture. Or my upside-down pureed beet enema.

Most surgeries for UC is now the jpouch.  It has a very high success rate, leaves the patient with the same type of control, and allows us to return to a full active life.  I have been able to return to backpacking and hiking thanks to my jpouch.  It is true that many of us had a temp ostomy between surgeries.  I had one for 8 weeks.  Although we didn't get along the ostomy allowed me to recover quickly and eat what I wanted.  If you are nearing surgery and need to know more about it I suggest you get educated.  Understanding the procedure and getting the best possible CR surgeon are critical to the success.

Sue

Kazzaz, Rolf Benirschke played 7 seasons for the San Diego Chargers with his ileostomy, no reason you can't play basketball and football too :)

I've had my ileostomy for 32 years now, swim regularly in summer, travelled the world, been rock climbing, ridden elephants and camels. I know ileostomates who have bunjee jumped (stupid people!), parachuted and been hang gliding. An ileostomy won't stop you from doing whatever you want - only your mind will.

No one has ever commented in 32 years that they can see my ileostomy (even under a bathing suit). Unless they have x-ray vision and can see under clothing, there's no way they can see it.

I guess I will put my story out here. I made the decision to have j-pouch surgery and my first step was done in Mar'07. I am not going to lie - it is a rough surgery to recover from but in the end it is so worth it. I tried all of the medications before I made my decision and looking back I wish I would have had surgery sooner. After my first surgery I developed a major blood clot (which is a risk with any surgery) and I also had problems with dehydration. You have no idea how much more fluids that you have to intake to make up for an illeostomy. Any little bug can bring you down quick, but as long as you make a conscious effort to get at least 100oz of fluids in a day you should be good. I was out of work for 10 weeks and was still having to have IV fluids every day at home up until 4 months after my surgery. I would say it took me at least 6 months to start feeling 100% after that first surgery. I ended up having my illeostomy for a little over a year because my surgeon would not operate until my blood clot was safe. I had mixed emotions about my illeostomy. I had alot of skin problems since my stoma was so retracted, but on the other hand it was such a relief to not worry about finding bathrooms all of the time and worrying that I would have accidents. I had my second surgery in Apr'08 and it was sooo much easier than the first. about 2 weeks after surgery I was feeling great. Because I had so long in between surgeries adjusting to my j-pouch was no big deal. I probably go about 4-6 times a day but honestly I have to think really hard to count that up in my head. You just don't really notice it because you go when you go to pee. My surgeon says you can take up to 16 immodiums a day. The more you take the less you will go. I usually take around 3 if I have big plans for the day. The absolute best thing about a j-pouch is that you don't have urgency and you can feel that you need to go to the bathroom and wait a long time before you really have to go. It is a great quality of life compared to life with UC. Feel free to ask me any other questions. I really enjoy helping others out by sharing my story and listening to others.