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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. 

LauraLee posted:

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 

Hello Laura,

Just wanted to ask how you are going. I too feel like giving up sometimes – I guess for me that would mean staying on the couch in my PJs instead of making myself have a shower, put on uncomfortable clothes, and attempt to keep in touch with friends and a world that doesn't seem to have much time or patience for sick people.

Is there a treatment or management plan for Crohn's? It must feel like being kicked when you are down to have this on top of UC and problem j-pouch.

I hear you about the stress. I am overwhelmed by it a lot of the time. The things that relieved stress for me – socialising, cooking, exercising – are now sources of stress. Ironic, I suppose.

Do post again as you can.

Sarah

It's a hard road no doubt. You were so young to start out life this way.  I thought to after J Pouch I would be cured; wrong.  I said it before it's a day to day  battle. Some days are good but the bad outweighs the good.  I really do the most on good days and be thankful for them.  I pray for healing, I bake and cook almost all my food.  I can't eat out much due to pain and diarrhea.  I'm glad I enjoy cooking it makes me feel good.  I am accepting what I can and can't do.  I k the timing of my bowel and how long after I eat.  I schedule my day that way and I do get to go out and enjoy what I can.  Can't dwell on it; take advantage of what u can do and when.  I was dx: UC 98 and had td in 2013.  Keep busy.  You might laugh at this but I get alot done on toilet.  I read, go over the mail, sometimes do my pedicure. lol  Hey u have to make the most of it because I spend awful lot time there and I have everything at hand.  What can ya do.  I'm happy to be able to get up and get around and not be in hospital.  Keep strong and let us know how it's going we are here and know and feel your pain.   

Ok so I just reread this entire thread and I am devastated at how much physical and mental pain is out there among all of us.

My k pouch journey started at birth with my 1st colostomy on my 2nd birthday after 6 failed reconstructions.  At 9 the whole surgery/failure cycle started again because the pred was killing me and I refused to take it anymore. 

From 12-18 I had 2 failed gracillis muscle flap surgeries (worse surgeries ever)to reconstruct the destroyed sphincter. At 18 I met Dr Cohen who saved my life and gave me quality of life for the 1st time. 

I've had pouchitis, a slipped pouch (3xs), valve slippage, hernias , occlusion, twists and the whole 9 yards...still do (2 broken arms last year and an accident 2yrs ago that left me limping and in permanent pain)...

But...and this is the big one... I have never given up the search for joy. I have never given up on happiness. I believe in small wonders, rainbows and tickling babies and puppies... I am no idiot, I put myself through university working 7 days/week  for 7yrs...hell...and fought cancer simultaneously but I fought...and won. 

I believe in happiness at all costs... I believe that we can find and keep love and that we are lovable (yes even with all of our issues) ...a walk in the rain or a rambling phone call with a friend can put my day right .I teach M.B.A. on a stage in front on 40-80 kids at a time... fighting pain, leakage at times,  wearing a tube & appliance at others. But I laugh and give love...and make them laugh.

None of them knows my condition but all have my phone number in case or an emergency... I have a passion and commitment and they keep me going through the darkest days.

It doesn't matter how or in what form but we need a passion and a commitment outside of our selves to keep going ... it could be our kids or painting or dog walking but something to separate  our minds from our bodies. 

Work from home or your toilet seat...read to the blind or deliver meals...some of our own pain disappears when we help others heal.

When I shop there is always someone outside asking for money... I buy them food instead. I give flowers to strangers because on the worse day of my life (21st birthday when they told me I would never have kids after the HSG) a stranger handed me a rose and smiled .

So please do not give up. It's a long journey and full of bumps and dark valleys but it's worth the trip.

K pouches and BCIR exist in case of total j pouch failure. I know, I've had mine for 39yrs...moved to Paris and built a life.

So please do not give up the good fight.

Sharon 

A few years ago when I joined this group, I read some of Sharon’s posts and found them to be very inspiring.  I responded to one of hers and referred to her as being the “Energizer Bunny”.  She has certainly lived up to that title to the current day.  I wish that I had read some of her inspiring writings during some very dark days in my life.  Somehow, I made it through all that and am now on the “other side”. Sharon will be a main speaker at our Quality Life Association’s annual conference in Clearwater, Florida this September and I am anxious to hear her presentation and to meet her in person.

Bill

Thanks, Bil, for the cheering section (it does a girl good to hear that she has done good!) and for the nick-name...it stuck!...

Today is student garden party day at my place, I have invited over 20 for homemade cakes and pastries...yes, I bake for my students. I will cook for them too and make a spread to light up their eyes. 

My joints hurt, my back aches & my pouch is gassy and quite honestly, I would love to stay on the sofa and series-binge but I cannot today because joy is coming over. 

Doesn't matter what I am feeling (I am hooked up to 2 sets of electronic TENS pads on  1 of my broken arms and knee)...because my kids are coming over...

They used to call it mind over matter, focusing your energy...I do not care about titles...just helping others so I can forget myself...my pain will still be here later but the kids not...so, for now, I am going to empty my pouch, take something for pain and get my poor rear in gear and bake my little hear out.

Because this life, no matter what, is worth fighting for...if you can see the bigger picture beyond the pain, anguish, disappointment, frustration, anger, and meds.

Sharon

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