Crohns and Colitis Exchange

Having lived with a J Pouch for over 20 years due to Ulcerative Colitis, I can tell you living with less colon is nothing but a bitch. Your case sounds possibly worse than mine too, since my Colitis never returned after they amputated me. That's why I'm thinking in your case why would you want to go through that again? You'd think that one amputation would be enough, but no they want to cut out even more. Have you ever thought about doing something such as http://www.medscape.com/viewarticle/478342

I know I'm not getting a J Pouch....I hope. It's not the Crohns that's the real issue right now, as I understand. It's the scar tissue closing things off. I've had it streached once but they don't want to do it again as it's to weakend. The Crohns has come back but only like 2-3cm. So I don't understand why they have to take so much? So living with a shorten colon involves what exactlly? I read the link, not sure I'd try that at this point, but who knows what the future holds.

Thanks, I've read most of your posts and you are a great help to many. Wish we could be of help to you.....

I understand, when you have Crohns, and the J Pouch usually isn't an alternative when it comes to Crohns. I don't understand the specifics either as to why they believe more of your colon should be removed. Although I am aware of how Crohns attacks your colon in a checkered pattern. I can also understand why you'd rather live with what's left of your colon versus the alternative of an ileostomy too. Perhaps you could try more experimenting with your diet too. Getting more opinions might help too. I've seen a lot of people over at jpouch.org praise this guy http://my.clevelandclinic.org/staff_directory/staff_display.aspx?doctorid=4138 But since he's all the way in Cleveland you can always just search for more on the internet.

kaj, I dont have crohns but had over 4ft of my small intestine removed b/c of scar tissue and a blokage it created. I ws septic and had the surgery at 14 weeks preggo. My recovery was awful and I lived in the bathroom. I go about 4-5 times day now and that is with taking 2 immodium. some days more some days less. I can eat much more now then I could right after the surgery. My digestiuon hasnt been the same since. anemia and b12 deficient sicne I am no longer absorbing appropraite nutrients. I still cant eat veggies/salad ad most fruits. I live on white starches nad chicken/meat. I cant eat fried foods etc. Mylittle one is 4 so Ive had time to heal. I have beasically resigned myself to this is how it will be forever. I was much much much worse so this is livable. I had a hard time functioning for a good 2 yrs after. I was on ablout 6 immodium a day and drank pepto like water just to get through. that and some vics... hopefully you will have a better experience... gl with your decision.

I don't know exactly what you're going through, but I can offer you some insight. If your rectum is still intact and you still have some colon left, your bowel movements will be more watery and more frequent, but that doesn't mean you'll have constant diarrhea. Your colon absorbs a lot of the excess liquid from your stool, helping to maintain hydration and firm it up so that it comes out formed and not liquid or mush. Without part of it, I'd expect that you'd have some diarrhea, though I would think that you could still certainly have normal activity and that your life would be fairly normal still.

I have a J-Pouch, no rectum, no colon, and if I do it just right, I can go from 7 until around 3 or 4 without having to use the bathroom. Right now, I wake up and drink a Mountain Dew or two, or a couple cups of coffee depending on my day. Sometimes I eat a bowl of cereal, sometimes I eat a pop tart, sometimes I don't eat breakfast. I take two Immodium. I go to the bathroom between 3 and 4 times between getting up at 5:30 and leaving the house around 7. Then I don't go again until I get home most days. I don't eat much through the day, but I drink a bottle of water or two most days, and I take another Immodium around 11 or 12 if I've eaten or drank more than usual. I'm in the bathroom off and on all night, but I'm getting to where I only have to get up a few times to use the bathroom while I'm sleeping instead of every hour or so.

I know that's probably more information than you wanted or needed, but I want you to know that if this surgery will improve your quality of life, you shouldn't avoid it just because you're scared of being in the bathroom. A J-Pouch is a sentence for life-long diarrhea. But it can be controlled in many situations, and you will still have colon and rectum, so your situation and outlook should be much more positive than mine. If you have any questions that you think I might be able to help you with, feel free to ask.

Thanks everyone, I found out they will be taking at least 15cm and hopefully no more, but could be 40cm if they get in and find more Crohns. For me diet doesn't seem to matter..... I can eat something one day and be sick and a month later eat the same thing and nothing, so I don't know what I'd do about diet. Right now, the only problems I am having are pain and stools change every time I go and could be up to 10 times a day. But I have been able to keep the diarrhea away so far.
I plan to have this done in Oct if I have enough sick leave otherwise I can't afford to do it till spring and Dr said he didn't think I could wait that long for fear of blockage. But what does one do, can't afford not to have insurance and if I don't have the sick leave, then I have to take a leave of absence and pay all of my family health! OUCH no way, I don't make even 20,000 a year. How do people do this?????
Thanks again! Hannah you are a remarkable young women! At 45 wish I had the drive you do!

You are definitely up a tree as far as insurance/sick leave are concerned. So sorry about that.

You are definitely so correct about "our" Hannah! She is a wonder for someone her age. She has been through so much and is always positive. She amazes me!!!

Looks like middle of Oct.....have to talk to work see what they will do. I have the sick time, so hopefully all will be good. Except having to have it done in the first place. But guess I don't have a choice anyway.....

Thanks everyone!!

We're here for you....please remember that.

God bless and keep updated, ok?