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J pouch experiences

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Ulcerative Colitis
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Mak37
Regular Member
Joined : Jan 2018
Posts : 334
Posted 1/23/2018 6:15 PM (GMT -6)
Hi all, I have talked to my surgeon and doctors and they told me the surgery is my best bet. I have heard so many horror stories about j pouches though and was hoping for some positives, I’m really debating over this or a permanent ileo. I also am thinking maybe the healthy j pouchers don’t need these sites anymore so that’s why I’m not seeing anything positive. He did tell me about going probably 4-7 days when I adjust and I don’t have an issue with that even if it were like 14. I guess I’d just like some positive feedback from this procedure if it helps at all they’re doing a two step. I also posted this in the Ostomy section as well, let me know if I am posting too much as well I’m not sure on those rules lol anyways any positive feedback would be appreciated!
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3timechamp
Veteran Member
Joined : Oct 2009
Posts : 1752
Posted 1/23/2018 6:27 PM (GMT -6)
I just had my surgery 2 weeks ago today. I saw mainly positives about surgery. Few people I know said it's a better quality of life after surgery. Still need 2 more surgeries Hope everything goes well. Definetly an adjustment but surgery always is
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Mak37
Regular Member
Joined : Jan 2018
Posts : 334
Posted 1/23/2018 7:05 PM (GMT -6)
I am happy to hear that 3timechamp. I am very nervous and your reply helped!! I hope the next two go well for you!
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3timechamp
Veteran Member
Joined : Oct 2009
Posts : 1752
Posted 1/23/2018 7:18 PM (GMT -6)
Thanks. I had a very diseased colon. No cancer but couldn't stop the Big D My gastro wanted me to go on humira or Remi but they lower your immunity and I didn't want to go there. I'm 59yo so better to do it before I'm too old. It's a job staying hydrated but with Gatorade and Imodium everything working out. People say dehydration issue gets better as time goes on
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3timechamp
Veteran Member
Joined : Oct 2009
Posts : 1752
Posted 1/23/2018 7:20 PM (GMT -6)
Mak where r u located?? Where would u have surgery?
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Mak37
Regular Member
Joined : Jan 2018
Posts : 334
Posted 1/23/2018 7:48 PM (GMT -6)
Yes I failed humira and the IV steroids in the hospital have only gave me a small improvement. They told me I could try Remi but that it probably would not work. I am waiting for my biopsy results still so hopefully those come out okay. I got transferred to Kansas City. KU medical center is where I’ll be having it.
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notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17854
Posted 1/23/2018 8:02 PM (GMT -6)
What about entyvio?
I had surgery. My experience is in my signature. It's long, and detailed. I am very happy to be done with all the issues I had living with UC. It's a tough decision, and I wouldn't wish it on anyone, but it can be very liberating if it's your best option. smile
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3timechamp
Veteran Member
Joined : Oct 2009
Posts : 1752
Posted 1/23/2018 8:07 PM (GMT -6)
Cool
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Mak37
Regular Member
Joined : Jan 2018
Posts : 334
Posted 1/23/2018 8:26 PM (GMT -6)
I asked about entyvio but unfortunately they said that the medication takes some time to kick in and that I don’t have that kind of time. I will definitely go look at your signature. Yes very tough decision, everything feels so unreal!
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ks1905
Veteran Member
Joined : Sep 2005
Posts : 6245
Posted 1/23/2018 8:27 PM (GMT -6)
What are your concerns? That you’ll get pouchitis? You’ll need to go back to an ostomy? You’ll go too often? Living with a jpouch is worse than living with UC?

So I have chronic pouchitis, it’s sounds like a nightmare going through 2-3 surgeries and then needing medication to take to control it, honestly it’s not that bad. I take Stelara and I go 2-5 times a day and I can hold it for as long as I need to. I don’t have urgency. It’s totally different than living with UC.

At my worst with UC I was going 40+ Times a day and medications didn’t work.

I really like my jpouch even with its problems. You just have to come to terms that your colon is too sick to be healthy again and this might be the best alternative for you.

You can live with an ostomy for up to 3 years before you make a decision about the jpouch or permanent ostomy, at that point your sphincter will lose their strength and then you’ll need a permanent ostomy.

I can eat and drink whatever I want with my jpouch.
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Mak37
Regular Member
Joined : Jan 2018
Posts : 334
Posted 1/23/2018 8:31 PM (GMT -6)
Thanks for your input ks. I am not concerned about being stuck with a permanent bag if it fails, I would be okay with that. I guess I was just really worried about the pouchitis part, but your comment made me feel better about that.
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Kanva
Regular Member
Joined : Mar 2017
Posts : 150
Posted 1/24/2018 3:17 AM (GMT -6)

Mak37 said...
I got transferred to Kansas City. KU medical center is where I’ll be having it.


I had care at KU Med, but I ran into some issues with their system and ended up transferring to St. Luke’s. I’ve had great care there ... thorough medical care, good customer service, quick response time, etc.
I am having my surgeries at the Mayo Clinic in Rochester, MN. It’s covered by my insurance, and I figured I might as well go for the best I have access to. The drive is a bit of a pain, but it’s been worth it.
My second of three surgeries is in a few hours, so I can’t tell you about the actual j-pouch yet. What I can tell you is how life-changing the first surgery was. As soon as I woke up from anesthesia, I could tell a difference. I feel like I got my life back. So far, if there’s anything I would change, it would be having gone for the surgery sooner, so I wouldn’t have had to waste as much of my life being sick. I was really worried about having an ostomy, but it wasn’t nearly as bad as I feared. I’m looking forward to being “normal” again, but I could deal with having an ostomy long-term. Who knows how I’ll feel about it after all three surgeries are over.
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Mak37
Regular Member
Joined : Jan 2018
Posts : 334
Posted 1/24/2018 5:50 AM (GMT -6)
Thanks for your update kanva.. keep the site updated about your surgeries I’ll definitely be reading them! I was originally from a different hospital too about two hours away but got transferred here because that hospital is not well known and I didn’t trust having my surgery there but Mayo Clinic in MN is where I will be going as well if we have any issues!
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ks1905
Veteran Member
Joined : Sep 2005
Posts : 6245
Posted 1/24/2018 9:22 AM (GMT -6)
I was just reading your signature. I'd ask for an MRE scan (specifically ask for an MRE) to rule out crohns in your small intestines prior to surgery.

That should help you make a decision with either a j-pouch or permanent ileo.

If you don't want surgery then ask to try Stelara, it works very quickly(days/weeks) not months like Entyvio. It will be difficult to get but your GI should try to get it approved from your insurance company.
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ks1905
Veteran Member
Joined : Sep 2005
Posts : 6245
Posted 1/24/2018 9:41 AM (GMT -6)

Mak37 said...
Thanks for your input ks. I am not concerned about being stuck with a permanent bag if it fails, I would be okay with that. I guess I was just really worried about the pouchitis part, but your comment made me feel better about that.

Living with pouchitis is so much better than living with UC. It is easier to treat, responds better than UC and doesn't affect me very much.

Think of it this way, if you have pancolitis your whole colon is affected (5+ feet) but if you have a j-pouch with pouchitis then it's only about 6" of effected intestines.
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Mak37
Regular Member
Joined : Jan 2018
Posts : 334
Posted 1/24/2018 9:44 AM (GMT -6)
They did an mre 4 days ago and didn’t find anything wrong, I forgot to change my signature... the only time they thought it was Crohn’s was whenever I was first diagnosed they thought they had seen what looked like it but they couldn’t really figure it out. They are doing blood tests and biopsies to rule it out for sure then they will let me know what surgery to get. They said my symptoms point to UC especially since I don’t have skip areas (my whole colon is inflamed/diseased) and also because they have never found anything wrong with my small intestine aside from it having a malformation (birth defect). I don’t see surgery as a bad thing though so I think I would rather have it because I’m soooo tired of being sick all the time! But if it does end up being Crohn’s in the long run I wouldn’t mind going bavk to a permanent ileo. But I would like to see if the j pouch would work for me first.
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16373
Posted 1/24/2018 10:32 AM (GMT -6)
From what I've read, the majority of j-pouches go well with most getting an excellent to good outcome. There are a minority that have poor outcomes and some warrant a reversal of a j-pouch to a stoma. In the end it's a leap of faith (do I truly have UC with 100% certainty?, will I have a good outcome?, etc.), the odds are generally in your favor. There's horror stories in absolutely everything (have you seen how difficult using an old-fashioned mop is in infomercials?).

A surgery is by no means a summertime stroll in the park, it's multiple surgeries with recoveries that will take time. I'd just figure how much time you want to set aside to being well. There's a time cost to trying a new biologic and expecting results. There's a time cost around the surgeries. Figure what makes the most sense.

Often, folks fail two biologics before going the surgery route. As failing two makes you statistically unlikely to respond to the rest. It's always said that the best outcome is to be in a remission regarding quality of life. However, a remission isn't always possible for all, and many months and years end up going by struggling trying to achieve it. In the end it is what you want. There's always opportunities of dozens of more things to try, but does that make sense in your time-budget?
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ks1905
Veteran Member
Joined : Sep 2005
Posts : 6245
Posted 1/24/2018 11:14 AM (GMT -6)

iPoop said...
From what I've read, the majority of colectomies go well with most getting an excellent to good outcome. There are a minority that have poor outcomes and some warrant a reversal to a stoma. In the end it's a leap of faith (do I truly have UC with 100% certainty?, will I have a good outcome?, etc.), the odds are generally in your favor. There's horror stories in absolutely everything (have you seen how difficult using an old-fashioned mop is in infomercials?).

@Ipoop,

Are you talking about a colectomy or a J-pouch? If it is a repair to the Ileostomy (Colectomy) it would be called a "revision". Which is a minor procedure, maybe a day or two in the hospital.

If you're removing a j-pouch that is a major surgery and you'll be in the hospital for a week or more.
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16373
Posted 1/24/2018 11:15 AM (GMT -6)
J-pouch, eevised my initial post accordingly.
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Mak37
Regular Member
Joined : Jan 2018
Posts : 334
Posted 1/24/2018 12:09 PM (GMT -6)
Thanks for your input Ipoop. I liked the added mop reference because that is so true 😂.... but I think I would rather deal with the surgeries than what’s happening now, they said I have been on steroids for far too long and that they would have to get the inflammation under control in a couple weeks for any of the medications to work and that is just not going to happen. They do kind of want to try Remicade but I think that by trying it, it will just be post pining the surgery. I am not happy at all with how this disease doesn’t let me do anything (I know you’re not supposed to let it control your life but how can you do that when you’re in the hospital for months) I’ve been in the hospital more than out in the last three months. I definitely agree that others should be open to trying more medications but I think surgery is the best route for me. But I’m worried that they will get in there and turn it into a 3 step instead of 2 as I have been on pred since May.
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ks1905
Veteran Member
Joined : Sep 2005
Posts : 6245
Posted 1/24/2018 12:30 PM (GMT -6)
Here is the thing, if you are this close to surgery then you'll probably need it at some point in the future if Remicade "works/saves you". I was saved twice by Cyclosporine but I always knew that at some point that I'd need surgery. So I postponed the surgeries and lived my life but I needed Prednisone every so often to control my flares. In December 2016 I needed my hip replaced because the prednisone killed it. So instead of 3 surgeries I've had 4 surgeries, directly or indirectly from UC.

You can read more about my hip surgery in my signature.
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3timechamp
Veteran Member
Joined : Oct 2009
Posts : 1752
Posted 1/24/2018 12:37 PM (GMT -6)
Mak I just had surgery. I don't care if it's 10 steps. After 32 years of this flare and that flare I'm done. No more flares. My flares had names. April fools flare. Xmas flare. Ambulance flare. Now it's called Daddy won't be having any more flares. I didn't need an emergency surgery. I haven't been in hospital in few years for my UC but colon was getting worse,nothing but Big D while on Pred. If Pred don't fix it then we have problems. So surgery it is. Gastro and surgeon both agreed. I need 3 step,whatever it takes to not be a slave to this disease. I'm 59yo,I want to see my grandchildren whenever that happens. Each surgery will be a challenge. Challenge #1 I'm going thru now. Peace and God bless
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Mak37
Regular Member
Joined : Jan 2018
Posts : 334
Posted 1/24/2018 12:38 PM (GMT -6)
Yes ks that is exactly what I am worried about. Right now though they have me in the highest dose of IV steroids and still not working. They are making me get a dexa scan soon (I think that’s what it is called). I definitely don’t want to get hip replacement surgery or any type of surgery like that, sounds painful and also preventable. They told me they weren’t even going to try cyclosporine on me, I brought it up... I forgot the reason for not being able to do it though
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ks1905
Veteran Member
Joined : Sep 2005
Posts : 6245
Posted 1/24/2018 12:54 PM (GMT -6)
Usually you need an experienced GI who uses Cyclosporine as an IBD drug. Not all GI's use it. Cyclosporine is over 90% effective in bringing a flare under control. Biologicals are much less effective.

I had to go for weekly blood testing when I took Cyclosporine, it was a pain.

Hip replacement isn't painful but it is difficult to recover from. Because of my young age I'll probably need it replaced again in my lifetime. I think they call it a revision because it will wear out after 20-30 years.
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notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17854
Posted 1/24/2018 2:44 PM (GMT -6)
I gave into having surgery because I felt the way ks described. If I was able to get it under control, for how long would it last, and what kind of quality of life would have waiting for the next big flare up? The drugs were taking a toll on me physically and mentally regardless. Ever since i was on pred, I was up at least 10 to 20 pounds over my normal weight. I looked and felt sickly. I don't anymore.

That said, some people respond to biologics for very long periods. So I don't want you to think it's not possible for you. It may be. I think the more severe and the more difficult to treat, might be some indication of the level of effectiveness, but not necessarily. For me it was. Others have had symptoms disappear nearly over night, and stay that way for long periods. The lack of response to Humira makes Remicade less likely. Entyvio is a slow working drug, with about 40-50% response rate among UCers. If you're willing to go another few months, it could be worth it, but the question is, even if you waited, and it worked, how long would it postpone surgery? Maybe a year, maybe two, maybe 10. Who knows.
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