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Ugh so my son is the hospital for stubborn pouchitis and who knows what else. Doing blood work, testing for cdiff and cmv, tomorrow going for mri and pouchoscopy. Checking for stricture, fissure, chrons, the whole 9 yards. Already tried cipro, flagyl, xifaxan, Entocort, hydrocortisone enemas, probiotics, nothing is helping. Poor kid is in pain every time stool hits the rectal area, has to strain, not feeling relieved, bleeding. Every time we try a new medicine we have to wait to see if it works and he is suffering while waiting. Now they are talking about biologics. Remicade didn’t work when he had a colon. Not sure why they think it will work now. Then what if biologics don’t work. What’s left? Sorry for the rant. Feeling terrible. I just don't see a light at the end of the tunnel anymore.

 I'd like to hold of on the biologics as a last resort. Because I really don't know what else there is to do if those fail. I asked about 5-asa meds either oral or rectal but Dr seems to think those are not as effective. I will NEVER, EVER do prednisone again as it never helped him when he had a colon and he had every single side effect, even these horrible stretch marks on his back that now look as if he was whipped. Just can't stand the waiting and watching him suffer.

Last edited by Momma
Original Post

He may have a stricture. I  have one and fissures as well from it and experience all of his symptoms. The pouchoscopy will pinpoint it for certain if he has one. i understand his pain.  It’s understandably very hard to watch. 

If he has a stricture they will dilate it. Some people have luck with this. I’ve had several and now am going in for pouch advancement as mine is very tight and has been giving me many issues, the fissures being the most painful.  Please update us as to how he is doing. I’m sorry you are going through this at this time. 

Poor Kid! It sounds like there is a nasty fissure going on on the outlet along with whatever else is going on inside...no solutions (other than anesthetic creams to deaden the zone pre-stool...they helped me a lot when I had one on my stoma).

I hope that they find what is going on and that they help him soon.

Sharon 

The worse that could happen is to remove his j-pouch and go to an ileostomy.  I hope that doesn't happen. My j-pouch failed after trying lots of things and I had to have it removed. My quality of life is much better now and I wish I'd had it removed sooner. 

Hopefully they will be able to help him as noone wants surgery.

They can remove the pouch and he could go to an end or temporary ileo but leave his rear end intact so he could try and have a pouch created again later.   I didn't know it but that's what my surgeon did. I wish she would have taken it out. (rear end)  Because I'm not trying a j pouch again. I have an end ileo and am happy with it. 

But that is an option. 

Richard. 

Hello, Momma.

I feel sorry that you and your son are having anxiety and pain. At his age it will be tough. Does your son have a sitz bath?  The warm water will help soothe the sore and raw tissue inside and out. Sitz baths (or sitz basin) are available at major drugstores or health equipment stores. Also on Amazon for under $15.

Set the basin on the toilet (seat up) and fill it with very, very warm water. Lower into it slowly (some water will displace through the hole in the back and flow down into the toilet so don't worry about the floor getting wet). Your son should sit in the water until it cools. You can refill it with warm water, without getting up, by using the tube and plastic bag that comes with the basin. The warm water will bring a healthy blood supply to the tissues and will help heal the raw and sore areas inside, and around the outside. Dry the skin thoroughly and apply a baby diaper rash cream. I used my sitz basin only a few times after my reversal and never needed to use it again. I remember how soothing the hot water was, and healing. Keep him hydrated with chicken soup, salty clear broths, bone broths, anything to keep his pouchitis-system hydrated. Can he eat solid food?  Use a hand blender and turn everything into a hearty thick soup for nourishment as he goes through this. Same goes for you about nourishment. Caregivers need care too. Seventeen years old is so young to have to learn about grit and resilience. Best wishes to you both. 

I totally agree with Winterberry.  The sitz bath worked for me also.  It's a hard road.     I tried everything u said your son was on and did.  Many unsuccessful.  I tried biologic  Humira and it never worked.   The good news is I have came up with my plan that works best for me.  If I stay with it I am ok, if not I am in alot of rectal pain.    This site is very helpful.   Tomorrow is always a new start.    

Hi,

I can’t remember the last I posted something but it was long time ago. Maybe over a year,  full of all kinds of issues with my JPouch.  I’m just feel hopeless, lost, discouraged and too sad and depressed to keep fighting.  I really need advice.  I faced UC since I was 21 years old, and after 22 years of multiple issues, suffering and sadness, I got my JPouch surgery done in 3 phases, thinking it will be the end of that horrific chapter in my life.  But another horrific chapter opened then.  After 4 years with my JPouch and lost of Pouchitis, 1 huge Obstruction, C.Diff, H. Pylori, chronic depression and stress, today I just found out I also have Crohn’s.  I don’t know if anybody went through something similar but at this point I’m ready just to give up.  Does anybody knows how can a person with a JPouch can deal with this? Any words, opinions or advises will be appreciated and so much needed.

Thank you in advance,

Laura 

Hopefully now that you have this diagnosis they will be able to finally treat the correct disease. There are others here that have faced the Crohn's diagnosis after getting their j-pouches.  I had many of your same problems, like c.diff and pouchitis, and my j-pouch ultimately failed. It had to be removed. My medical "choices" were like choosing between evils similar to which I image you are now faced with. 

I feel for your pain and feelings of hopelessness. Please don't give up.

Still Standing posted:

I’m so sorry you’ve had to go through all this. It isn’t easy to stay positive when all is going down hill.  I tend to isolate myself when this happens but find it only puts me lower into the pit. Know we are here for you - no matter what. I wish I had a magic wand to whisk it all away. You’re in my thoughts and prayers today!

Thank you so much for your kind message! It means a lot to me.  I know each of us have a personal story behind, but is good to know, we are here to support each other.  I’m now trying to digest this new situation and asking the Lord to give me strength.  Thank you again because I know I’m not alone! God bless you!! 

Laura

I too had the Jpouch surgeries and chronic pouchitis/ a few Cuffitis and two months a go, now Crohns. I have an annoying stricture too. I am on Remicade, Pred, Methotrexate, folic acid, loperamide, mesalamine. More drugs than I’ve been on when I had my colon. It’s easy to feel down and depressed. I didn’t expect to be at square one after everything I went through to get rid of my colon. All I can do is accept it and move on with my life and do the best I can with what I have. 

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