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Ulcerative Colitis
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Posted 6/17/2010 6:37 PM (GMT 0)
I have been in a flare for 3 years now. UC played a major role in losing my job 2 months ago (but I can't prove it). It is effecting my love life, my social life, my work life, and it sucks.

I made an appointment with a surgeon. I tried every drug, every supplement, every diet out there. I'm cooked, exhausted, tired beyond belief. I want it out.

So my actual question is, am I nuts for just wanting an ileostomy and not getting a J-pouch? It would mean just one major operation rather than 2 and fewer chances of complications. I could also be back out and looking for work sooner. So what am I missing about the J-pouch that makes it so much better?
Posted 6/17/2010 6:50 PM (GMT 0)
You're not nuts; everyone has to pick the surgery that best suits them. However, just so you know the second op in a jpouch just closes the ostomy. It's not invasive.

Go for a perm ileo. Life can be great post UC no matter which surgery choice! Neither of the choices are perfect but there is a perfect choice for you. It sounds like you have made it.

Sue
Posted 6/17/2010 7:11 PM (GMT 0)
I feel the same way..My UC on a whole has not been disastrous but its been annoying and lingering and I am sick of it too..not quite at the door that your at..but walking down that road...
Posted 6/17/2010 8:08 PM (GMT 0)
Getting a surgery consult on monday....I have had it too. I don't feel too bad right now but whatever i eat goes right through me and im so done with being on the prednisone and the side effects. I want a life back!!!
Posted 6/17/2010 9:25 PM (GMT 0)
I feel your pain man.. and Knw were your coming from..
Good luck to you in whatever your decisions
Posted 6/17/2010 10:08 PM (GMT 0)
I'm going for the j-pouch and with that you can always go back to an end ileo.

I have a temp ileo right now and I can't wait for the j-pouch. It's just me, but the ileo annoys me sometimes. That and I miss sleeping on my stomach, lol. I guess it's really a personal preference. I'm going for j-pouch because my surgeon, my GI, and I were all confident that I wouldn't have any trouble with a j-pouch.

I'm only 2 weeks post op and I'm liking it. I'm able to eat food now and not worry about having to worry about bathrooms.
Also my strength is starting to slowly come back. I was able to clean my house today. I feel completely wore out, but I wasn't able to do that before when I was in a flare up. One wrong move and it would cause my stomach to send me running to the stomach.

Let me tell you though, you will notice the fact that your stomach pain is completely gone after surgery, but the pain from surgery itself is pretty intense. Of course this is coming from someone that had an open surgery instead of laparo and I also had/caught a cold so after surgery I was coughing (and I still am) so that was horrible cause it made my stitches HURT and at times it felt like I couldn't breath and they had to give me one of those inhalers that they hook up to the oxygen thing in the hospital.
Going to the doctor tomorrow to see what they can do about the cold/cough and hopefully when this goes away my strength will come back much faster.
Also I'm glad that I went though with surgery cause now I'm going back to college this summer and I don't have to worry about all that flare up stuff.

If you do go for j-pouch please make sure your GI has ran all the tests to make sure you DON'T have Crohn's. From what I understand people that have chronic pouchitis are people that actually had Crohn's.
Posted 6/17/2010 11:38 PM (GMT 0)
Go for it! I've had 2 surgical consults, & I had planned on a perm ileo for myself- the ONLY reason a jpouch is performed is aesthetics- nothing else, there is absolutely zero medical benefit to a jpouch. Not to say they aren't cool, in a weird way, but there is no medical reason to opt for one- whichever suits you. Also, a temp ileo is a whole different ballgame than a perm one- temp ileos are loop ileos, they're higher up, the output is more liquid & you have more of it. Good luck!

Posted 6/18/2010 12:00 AM (GMT 0)
I just had the 1st step of the j-pouch surgery and have a temp ileostomy right now. I will tell you off the bat that my life is finally back. The temp ileo is a little different and a little harder to deal with, but one that is temporary for me and the fact that I said that is that the perm will be a lot better! I am going out, making and HOLDING plans. As shiny said above, there is no more stomach pain, no more urgency, it is grand. I def feel for you, I have been there myself with a non-stop flare for 2 years. 2 years LOST! I couldn't do anything in my firehouse, date, and I nearly lost my job as well. I lived on immodium and Humira and prednisone. All those are no more. See a surgeon ... it won't hurt to talk with one to find out your options. You only live once like I have said to many, and you need to take advantage of that.
Posted 6/18/2010 12:08 AM (GMT 0)
     I am having a perm ileo on the 28th of June.  My surgeon said he would not recommend a j-pouch for me because of my age...63 (64 on the 12th of August).  He said a perm ileo is a lot less stressful operation on the body. 

     I have ulcerative proctitis.  My only inflammation is in the rectum but it has given me sooo  much grief in the last two years.  I was diagnosed in 1998.  Since my last (and only second) hospitalization in May of 08 for ten days, I have become prednisone dependent and that darn drug has almost killed me.  I already have osteoporosis, high blood pressure and now have to take diabetes medication because the prednisone has increased my blood glucose levels...ugh!  Hopefully, I will come through this operation successfully and be able to get off that dreaded prednisone and go on with my life.

     Want to add that I already ran the gamut of meds. So I feel I left no stone unturned.

Posted 6/18/2010 2:51 AM (GMT 0)
"That and I miss sleeping on my stomach, lol."

I think that you have successfully helped me decide that I will die if I ever get an ileo. I don't sleep well and can only seem to fall asleep on my stomach...trying to sleep on my back is very uncomfortable. I can only manage it occasionally if I'm sleeping on a couch.
Posted 6/18/2010 4:20 AM (GMT 0)
YOU CAN SLEEP ON YOUR STOMACH!!!! :D
its more an issue in the mind than actually doing it, of course it would be a while after surgery, but i sleep on my stomach every night, as long as i have my pads under me, if i dont have them, i cant do it.

Weirdbeard-you are SOOOO not nuts! Do it! i chose a perm ileo, because i was tired of everything, and wanted to kick UC's butt!
You will be much happier!
I live in NC too, btw, near hickory!
Posted 6/18/2010 4:56 PM (GMT 0)
Well I can sleep on my stomach on my left side, just not my right. I've learned to sleep on just on my side when laying on the right.
In fact the past few nights I get too comfortable and if I do have to wake up to empty it takes me a couple of minutes to get up cause I just want to lay there to sleep.

And if you are wondering, I only empty once a night if that. I try not to eat anything 2-3 hours before I go to bed and I don't have to empty at night :D
although, I've noticed that I'm wanted eating more and as of right now I'm not caring when I eat lol. Right now I'm addicted to fruity pebbles and I had 2 bowls about an hour before I went to bed last night. I only had to empty one last night.
Posted 6/18/2010 6:41 PM (GMT 0)
You are not nuts at all.....this is your decision and whatever you are comfortable with is the way to go. My only suggestion is to get as much information as possible, from your surgeon and from talking to people that have been through this, before you make your final decision.

My son was also very sick for over two years and like you was just so fed up and wanted his life back. He chose to go the route of a J pouch. Personally, he did not want a permanent ileostomy if it was avoidable. He is very active in snow skiing and water sports and being 18 is going through the dating thing. He had his first surgery last September and had his reversal (working J pouch) the end of February. It has been a long bumpy road but he now has the whole rest of his life ahead of him. He is now doing GREAT and is very happy that he took the more complicated, longer route that ended up in a functioning J pouch even though, in September, all he wanted was to get this whole thing over with.

There are definitely additional possible complications with the J pouch but in my son's eyes they are worth the risk. One fact that helped him make his decision was that our surgeon said that, one year post surgery, 95% of patients are happy that they had the J pouch surgery.

All I am suggesting is that you gets tons of information so you make a completely informed decision.

I feel for you and know how terrible things are right now......they will get better!
Posted 6/18/2010 8:03 PM (GMT 0)

NewShinyCD said...
I'm going for the j-pouch and with that you can always go back to an end ileo.

I have a temp ileo right now and I can't wait for the j-pouch. It's just me, but the ileo annoys me sometimes. That and I miss sleeping on my stomach, lol. I guess it's really a personal preference. I'm going for j-pouch because my surgeon, my GI, and I were all confident that I wouldn't have any trouble with a j-pouch.

I'm only 2 weeks post op and I'm liking it. I'm able to eat food now and not worry about having to worry about bathrooms.
Also my strength is starting to slowly come back. I was able to clean my house today. I feel completely wore out, but I wasn't able to do that before when I was in a flare up. One wrong move and it would cause my stomach to send me running to the stomach.

Let me tell you though, you will notice the fact that your stomach pain is completely gone after surgery, but the pain from surgery itself is pretty intense. Of course this is coming from someone that had an open surgery instead of laparo and I also had/caught a cold so after surgery I was coughing (and I still am) so that was horrible cause it made my stitches HURT and at times it felt like I couldn't breath and they had to give me one of those inhalers that they hook up to the oxygen thing in the hospital.
Going to the doctor tomorrow to see what they can do about the cold/cough and hopefully when this goes away my strength will come back much faster.
Also I'm glad that I went though with surgery cause now I'm going back to college this summer and I don't have to worry about all that flare up stuff.

If you do go for j-pouch please make sure your GI has ran all the tests to make sure you DON'T have Crohn's. From what I understand people that have chronic pouchitis are people that actually had Crohn's.

You can never really be sure you don't have Crohns. Every single pathologist that has seen my biopsies says I have UC, even after surgery when it is in the small intestine. They all say it does not look like Crohns but they have to call it Crohns because of where it is located. My GI is telling me that actually there is a spectrum of IBD and I really have neither Crohns nor UC. The only thing I have responded to is high doses of IV steroids. Even now on 40mg of Pred, I am back to going at least every 2 hours and am not getting better.
Posted 6/18/2010 8:22 PM (GMT 0)
No, you are not crazy. I have a j-pouch and am sorry that I did not just choose the ostomy. I have chronic pouchtis and all tests done over and over again show UC. I have no crohns symtoms. While I am grateful for the few years without the bag I may have to go back and yes you can go back but it is another major operation to consider. I guessd if you are young it is one thing. I was not that old-in my 40's but now 10 years later to have to go thru this again-ugh! Just too much drama with a j-pouch, never really off meds. ( ps I really hate the bag and had it for a full year due to complications from the first surgery but that in itself is a whole other story. )
Posted 6/19/2010 6:21 PM (GMT 0)
Thanks for the replies. I am starting to feel better about having surgery. I wound up in the hospital with a C. Diff. infection this week. What a bummer.

I am ready to be well again. Is it possible to actually look forward to wearing a pouch? I think it would be way better than the way things are now for me.
Posted 6/20/2010 1:42 AM (GMT 0)
oh i looked forward to it! I was sooo excited to be getting it, i was counting down days to a new life!
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