Skip to main content

So, they built the pouch on 8/18/15, and I'm having a hard time recovering.  I've been back in the hospital due to a small pouch leak, they gave me Flagyl and Cipro, for 4 days and then back in the ER due to dehydration.  I have no energy, no appetite, nauseated all the time, I take prescription anti-nausea meds multiple times daily so I can try to eat, and I'm losing massive amounts of weight.
Has anyone else gone through this and, if so, what helped and didn't help?  My takedown should be in late November, and I cannot wait as I loathe this bag with every fiber of my being.
Is this normal?  I don't mind the weight loss, but it's on the dangerous side of losing about 3-5 pounds a week.  Nothing will thicken the output, not even Metamucil, so the bag output is either a black or greenish liquid, nothing thick.  What has everyone done to thicken up the output?  I've tried just about all I can think of.  Any advice is appreciated!!!
Thanks all!!!!
Nora

Colon removed 3/17/2015, pouch built 8/18/2015.  UC discovered in 2001.  Looking forward to takedown!

Replies sorted oldest to newest

Nora, my son Jeffrey went through this.  His story is all over this forum because it has been such a long, exhausting road.  He had is colonectomy June 2014.  Take down Sept 2014.  He too developed a small tear in his pouch.  he was in lots of pain, totally miserable , as you have explained.  In December, they told us he has a golf ball size abscess and in January found the fistula.  He lost about 75 pounds, 120 in total.  If you are not feeling well at this point, do a capsule study and an MRI.  That's how we found my son's problems.  And to add to his problems, no one could find the leak.  In March, they ended up taking him off the j-pouch and giving him the ostomy back.  He had a hard time with il ostomy  the first time around, wanted nothing to do with it, I had to take care of him and it.  But this time around he has been much better.  He is also feeling so much better.  But we have had other complications, etc.  we ended up having to change medical teams are are now in NYC.  Jeffrey still has the ostomy and we are now waiting to see if the leak has closed up so he can go back n his j-pouch.  Best of luck.

Jeffsmom
Me... I went through it.  No leaks but pain and all that goes with it.  Weight loss?  Yes.... Lost over 50 pounds and now close to two years out I cannot gain but 10 pounds.  I was only 176 to start.  Got back up to 150...but lost 12 over the past few months.  I just cannot keep it on.  No reason... I don't know why.  But it is no fun being this thin.  Not healthy. 
Be careful thickening things up.  I was trying and caused a blockage that put me under the knife again.  They couldn't find where it was and it was very very painful.
To top it off I only had the bag less than four weeks and they took it off then.  Which caused me more pain and problems.  Which led to my huge weight problem.
I wish you good luck.  It's tough for awhile but bear down with it.
It will get better.
Mysticobra
Last edited by Mysticobra
Thanks for the replies. It's good to know that I'm not alone and others have gone thru this same thing.  I'm just worn out, physically, mentally, emotionally.  Today I feel better, able to eat and keep it in, but it seems like nothing's digesting, just getting liquid in the bag, no thickness to the output. 
I'll take the weight loss, but I don't like the weakness that accompanies it!
Again, thanks for the replies!!!!
Nora
NS
Yes... The weakness was terrible.
I know exactly what you are talking about.
It took me so long to get my strength back.  I didn't  think I ever would get through it.  The whole experience totally zaps you.  They don't tell you that.  You find that out on your own!
You will most likely get it all back but I haven't.  I think it was because of my age.  Not  that I was unhealthy.  But I am pushing 60 now and it takes longer to heal and get it back when your older.  You just don't bounce back.
Mysticobra
Last edited by Mysticobra
I always took pride in how strong I was, how independent I was, how self sufficient I was.  But this disease and these surgeries have knocked me to my knees, big time.  I wish that there was some more science studying UC, it's devastating!!!!!
I have been walking down my block, just one block, and I'm absolutely winded by the time I get back to the house.  I actually have to rest!  And, I'm due to go back to work, full time, on 10/1.  Yea, I don't think that's going to happen.  Maybe go back 1/2 days to begin with, but no way can I do a full 8 hours.  I loathe this disease!!!!
Thanks you guys for reading my rant and for letting me know I'm not alone in all this!!!
Nora
NS
I  took me nine months to start back to work.
Had it in Oct of 13....i thought I would be back to work by February of 14...ha....not  until the middle of June and 8 hour days took all of me to get through it.
I spent a few months of weekends just recovering from a full weeks work.  Sometimes had to and still have to take a day off during the week to get some strength back. 
I never thought... Never thought about how hard it would be.  Nobody tells you about how draining it can be for some.  It's tough.
Mysticobra
Last edited by Mysticobra
I'm due to go back to work full time on the 1st, but I think I'll just go 4 hours a day for a few weeks, then 6, eventually getting back to 8.  But even 4 will probably wear me out!
Why can't the doctors be more honest and tell you that there's a possibility that this will knock you to your knees?  All mine does is tell me I'll do fine!  If this is fine, I'd hate to see not fine!
I'm glad to know that this seems pretty normal and that it too shall pass.
Have any of you gained back weight once you went thru takedown?  Did you see a nutritionist?  I'm seeing one in two weeks.  But nothing seems to be digesting, just liquid, no thickness in the bag, so I'm not sure if a nutritionist will help much.  Anyone have any advice???
Thanks all!!
Nora
NS

Your second sentence shouldn't be overlooked, "due to a small pouch leak."  Frankly I think too many surgeons look upon a "small leak" as if it's normal and sort of hope it heals itself.  I welcome comments from those on the board with a history of "small leaks" healing themselves.  I am very dubious.   Even a small leak is not good.  That's my opinion after having two sets of surgeries (with leaks) and finally a pouch redo that seems to be working pretty well, finally.  I know it's weird, but I have never been so happy to pass gas before -- a sign, I think, of a non-leaking pouch.

 

Now, to your feeling tired issue, I am two months out and complained that I'm not yet strong enough to take on the world.  My surgeon says to be patient, which I can understand.  I hope you feel better soon.

aka KNKLHEAD

I agree. I had a small leak that did heal. So small that it was not known until I developed a huge presacral abscess and a fever of 105. In some ways I consider myself lucky because this prompted definitive treatment a month post op (not just antibiotics). Others here wound up with simmering symptoms for years until it was truly dealt with.

 

My point? I am not really sure, but if you keep having the nagging feeling that something is wrong, keep bugging your doctor. It is hard to find that balance though. None of us have anything to compare to in order to know what is "normal" and what isn't. You can make yourself crazy with it. 

 

Jan

Jan Dollar

Add Reply

Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×