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Do you regret your ileostomy or J Pouch??

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Ulcerative Colitis
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Posted 6/8/2010 8:17 PM (GMT -8)
  I am doing a lot of studying on ileostomy or J pouch.  It seems a lot can complicate a J pouch or it can go just fine. So I though I would ask a few of the been there done that crowd. Are you happy with the surgery you got or do you wish you would have done something else. I am not asking if you wish you had not done it but if you wish for the ileostomy rather then the J pouch or a JPouch rather then an osotmy? I have ready the good and bad so now I guess I am looking for real advise.  I have had an ileostomy before and honestly the only problem I had was some wierd side pain and I lost weight even though I was not dieting. In fact I was feeling really good and eating quite a bit.  I can loose weight since I am plus size but I worried if it would ever stop if I had a permanant one. Of course before my colon resection I was very very sick. I had a rupture and infection spread all over my stomach. The surgeon said he had to rinse off everything in there and I was on extremely high powered antibiodics so that can also be a reason why I had side pain and weight loss even 2 months out. Geez if only I knew what was coming I would have left the ileostomy and not be looking at doing it again.
Posted 6/8/2010 8:49 PM (GMT -8)
No, I am glad I have the j-pouch, even with all the pouchitis, and did not opt for the permanent ileo as I originally was going to. I had even more problems with an ostomy and do not want to lose my pouch. I think we'll get things under control and it will work out.
If you opt for the pouch and it doesn't work the way you hoped, you can always go back and do the permanent ostomy, too.
Posted 6/8/2010 9:02 PM (GMT -8)
i am super happy with mine! I mean sure there are times, when i'm like, ugh stupid bag,lol. But the majority of teh time i am soooo happy, and even when i am annoyed with it, im still happier than when i had UC. Its so much better, and i dont regret it at all.
I dont regret not getting a Jpouch either, because im glad i only had the one surgery and that i dont ever have to poop again! At least not the regular way, lol.
Posted 6/8/2010 10:05 PM (GMT -8)
I'm wonderfully happy with my ileostomy and don't regret not going for the j pouch (even though I was only 10 years old when I had surgery). My ileostomy gave me my life back and scarcely bothers me at all. I've had my anus and rectum removed and am all sewn up back there now but I still don't think I'd opt for a j pouch if I had the opportunity - if it ain't broke, don't fix it!
Posted 6/9/2010 5:17 AM (GMT -8)
Count me as one who has never regretted my jpouch surgery even though it a decision that took months to make. I have been able to return to long distance hiking (100-200 miles), international travel, and backpacking without the fear of the cycles of illness. Most liberating to me is not having to know where are the bathrooms are on my route when I leave home.

Sue
Posted 6/9/2010 5:23 AM (GMT -8)
I will let you know next month when I get my takedown down, but I am very happy so far with the first part of the operation.
Posted 6/9/2010 7:06 AM (GMT -8)
 Thanks, I am torn on what to do. I am not sure if I want 2 to 3 surgeries but I am not sure if I want a bag forever either. OY!  Either is better then having days I have that are bad.
Posted 6/9/2010 8:27 AM (GMT -8)
Three (3) surgeries are done when the patient is extremely ill. Two (2) surgeries is most common with the first (1) surgery being the most invasiive. The second (2) just closes the ostomy. And if you have no recent prednisone history you can opt for one (1) surgery!

Sue
Posted 6/9/2010 8:50 AM (GMT -8)
 WOw I did not read that! That would be nice. No I do not take prednisone but I do have cortenema's. I try to take 1/4 to 1/2 a bottle every night to wean off. I would like to get off but the cortenema's work almost instantly at reducing that very uncomfortable inflamed feeling in my rectum.  Sadly it does little for the D, urgency and it does not prevent accidents. Neither do the 5asa's for that matter.
Posted 6/9/2010 4:52 PM (GMT -8)
you will get a temp ileo, and you may find that you like it and just want to stay with it,and if you dont like it you can go with a jpouch!
but you can never go from perm ileo to a jpouch.
Posted 6/9/2010 7:33 PM (GMT -8)
I had wondered if I could start the J pouch then have the bag until I was good and sick of it.
Posted 6/9/2010 8:19 PM (GMT -8)
I had thought about doing just that before I had the surgery and didn't know a bag would be such an issue for me. At that time, my surgeon said I could put off the takedown for a long while.
Posted 6/10/2010 7:35 AM (GMT -8)
My 18 year old son, who was able to deal with this ileostomy very well, is extremely happy that he had the J pouch built. He was lucky (is any of us are actually lucky!) that he had his surgeries just after he finished high school. He deferred his university admission for one year so that gave him lots of time for recovery and no stresses of having to work etc. He is now 4 months post reversal and is doing great. For him, getting rid of the ileostomy was a really big deal.
Posted 6/10/2010 12:09 PM (GMT -8)
     Surgeon was very reluctant to do j-pouch on me, said I was too high of a risk because of my age 63.  He said it was more traumatic on my system than major heart surgery.  When I told him I was ok with the perm ileo he seemed very pleased and said I should have  no problem.  For the past four days I feel "normal".  Sunday  I had a terrible time but I attribute that to eating like a pig the day before.  Since then, with the exception of not having a solid stool....just kinda mushy....my pain, urgency and pressure are gone.  I only went once this morning, not at all yesterday and twice on Tuesday.  Of course, I am on 35 mgm of prednisone and taking rectal meds faithfully.  Today, my hubby and I made a list of pros and cons about my upcoming scheduled surgery.  Looks like the pros are still outweighing the cons though...prednisone dependency the most significant.  Haven't been able to taper lower than 7.5 in the past five months without the bleeding, urgency and pain coming back in the rectum. mad
Posted 6/10/2010 12:19 PM (GMT -8)
I can't imagine you changing your mind at this point Christine, you have no life!

Sue
Posted 6/10/2010 4:40 PM (GMT -8)
 Wow I will have to bring that up when I go in. I am not sure if I should wait for my next GI appointment or just go to my family doctor and talk to him. I am ok with an ileostomy I have done that before but it would be awesome knowing I can keep it for a long while. I want to be normal for some time. I want to go out without worrying about accidents or if I start having to go every few minutes. I just want to be able to live without all of that for awhile. Later on if I get good and sick of the bag then I can consider the takedown.

          It has now been a year that I started having troubles. I did not get a c scope until October though. So far no medications have done anything but give me side effects. The cortenema's at least helped with the horrible inflamed feeling but now I think they are starting to mess with my hormones since I started having trouble sleeping. I have only done that during hormal shifts like pregnancy loss and ending breastfeeding. I have been on them since January so it is time I got off anyways since they do not really work. So back to just rowasa which makes my hair fall out terrible yet does little for my symptoms.

           I have trouble though feeling like I am cheating. I have only had this a year and already I am wanting surgery. SO many deal with this for year after year before asking for surgery.

Post Edited (mom_JnJ) : 6/10/2010 6:45:53 PM (GMT-6)

Posted 6/10/2010 4:54 PM (GMT -8)
You're not cheating; everyone has their own schedule. I have met UCers who had the disease for only 3 weeks to a couple of months who opted for surgery. It's not that uncommon. And yes, you can keep your ostomy for as long as you like.

Sue
Posted 6/10/2010 5:00 PM (GMT -8)
     Sue...I realize it is the prednisone keeping this at bay.  However, most of these people in here seem to be FAR worse than I.  I am able to go out, but cannot make long term plans, such as camping vacation, cruise, etc. for fear of flaring.  I guess I am just scared of the unknown.  This glitch with the stress echo isn't helping much either...only added to my anxiety.
Posted 6/10/2010 5:30 PM (GMT -8)
You can't compare your own situation to anyone else's though, Christine. No 2 people have the same "breaking" point, pain tolerance levels, lifestyles, anything. While someone may be willing to silently suffer for YEARS, why should you? You've done it for years. You are not seeing improvement. Some people will grasp at a bit of improvement and hang in there, looking for a cure. Neither way of doing things is wrong or right.
Posted 6/10/2010 5:46 PM (GMT -8)
momNj-You are NOT cheating! If you continute on an unhappy path unable to live your life to the fullest, then you are cheating yourself!

christine-I know you are scared, and thats normal, but surgery really is the best option for you, you dont have any quality of life now! And yes, some peopel have it worse, but thats not you. Im sure lots of people had it worse than me, and it wasnt even that i couldnt stand it anymore, i didnt WANT to deal with it anymore. It just wasnt worth it to me. And you will be happier!
Posted 6/10/2010 5:59 PM (GMT -8)
Christine,

You are in denial about how bad off you are. I was you; I have been there; it didn't dawn on me how sick I was until I was well. You are sicker than you think and sorry to say, and in worse shape than many on this board.

Sue
Posted 6/10/2010 6:48 PM (GMT -8)

I’ve recently had surgery because my jpouch, for lack of better way of phrasing it, was failing and now I’ve have an ileostomy. The surgeon was going to try to repair the damage but the jpouch was too damaged but I did have enough small intestines to recreate another jpouch. Now I’m waiting for that to heal and in the 6 to 12 weeks go back in for a reversal. My problem now is that I feel great with the illeostomy compared to the jpouch. I eat whatever I want and after I found the right appliances I feel better than ever! I’ve also been thinking if what if this jpouch fails!

Posted 6/10/2010 8:28 PM (GMT -8)
I am newbie - almost 2 months since my takedown and I would do it again in a heartbeat! Make sure you get a really good surgeon :) You are not cheating - I cheated myself out of years being happy and healthy with my family - I should have got it sooner!
Posted 6/13/2010 5:58 AM (GMT -8)
+1 to Clicky's post. I am a 3 stepper and I would do it all over again in a heartbeat and wish I had done it sooner also. I only had a UC diagnosis for about 2 years before surgery but was never in remission and for a significant amount of time I was unable to really live my life and getting to work every day was a struggle. I had takedown in March 2010. I have my life back and am drug free. My ileo's were great - the end was easier to manage than the loop but neither was unreasonable at all and with them I was able to live my life again and get healthy. I wanted to be able to enjoy life without having to think about my appliance. I am fairly active and have a job that requires a lot of lifting and I didn't want to have to worry about pressure in the wrong places causing appliance problems. If something happens and I have to go back to an ileo because they can't do a redo or kpouch I will and I will be ok with it but I love my jpouch!! yeah
Posted 6/13/2010 7:16 PM (GMT -8)
I opted for a permanent ileo becuase my dr isn't sure if I have Crohn's or colitis, and I haven't regretted it one day since. :)
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