Have you tried Remicade?

Same story. RCH for 20 years, J-pouch (with pouchitis) for 10 years and now, they're saying I have Crohn and should get my first remicade drip the 22nd of November.

What treatment did you get, Toni ?

Nothing really works so I just live with it.  I take 5 mg of prednisone daily despite all the bad side effects.  Also 10 mg of lomotil AM and PM.

The truth is that I'm still alive 28 years after ulcerative colitis started, with several extended hospital stays, massive weight loss and intravenous feeding  before the operation.  Also, I'm 82 years old and the operation 13 years ago saved my life. 

Hi Toni

Before you try this; speak to your Health Care Professional i.e. doctor.

Rather then 10 mg of lomotil try using small amounts of Psyllium husk powder.

It's not easy to mix, but try mixing it with water, just small amounts, a tea spoonful twice a day, then build up gradually each day with just a bit more if needed. But Remember you don't want to be 'blocked up'; it has the ability to do that if you are already blocked up. 

At the same time rest the pouch. Get nutritional drinks prescribed; they will have everything your body needs. Drink plain soups like tomato, chicken etc. but without stuff like croutons etc. 

Report back please.

I have a JPouch for about 5 years with more downs than ups. No quality of life in the last 4 years.  Pouchitis, an obstruction that lead to big surgery and 2 weeks ago a blockage that put me on the hospital for 10 days with the awful NG tub.  Now after a number of tests and for the second time by biopsies came undetermined.  Some doctors said I have Crohns, other ones, just inflammation on my small intestine but I’m so concerned I can’t find the formula to keep me minimally healthy to just keep living my until now, miserable life.  I’m pretty desperate.  Now, I’m on 40 mg of Prednisone daily (going down 5 mg weekly for 2 months),  and then a biological drug (except Humira and Remicade because didn’t work on me in the past.

Anybody with a similar experience? Is this something common on people who have JPouch? Any advise or opinion will be so appreciated. 

Laura

Dear Laura,

I feel so sorry for you, but I completely understand your pain and frustration.  Like you, I have what my doctors call "pouchitis" and I have a minimum of 10 -12 stools a day.  From what I've learned, that's about average.  Not good for sleeping.  On bad days I spend way too much time on the toilet. 

I've been living with the pouch for 14 years and have accepted the negatives because I get to enjoy my grandkids and social and civic activities.

I suspect this is common for people with J-pouches. The surgeons don't warn us before we have the operation.  I  talked with one person who had it before I made the decision and he said it saved his life but he still had to worry about finding toilets in public places.

I love fruits, veggies and salads but limit how much I eat daily and generally try for a low-fiber diet.

Since the pouch is made from a piece if the small intestine my doctors said it should rightly be Crohn's and are treating it as such.  I take 1 mg of Prednisone daily and 5 mg Lomotil twice a day.  I have not tried Humira or Remicade.

Toni

Thank you Toni.  I appreciate the time to write me back and your kindness.  I’m glad you’re having a nice life enjoying your grandkids.  Sometimes just the feeling I’m not alone in this boat, makes a big difference.  

You’re right.  Doctors never tell us the consequences of what life will be, living without such an important  organ.  In my case I thought I was getting rid on UC forever and my life would change positively, but unfortunately it didn’t happen that way.  My life is pretty much deal with pain, inflammation, antibiotics, poor diet and emotionally I’m feel discouraged and depressed.   Some people suggest to go back to the stoma, but those seven months I lived with it, were the most uncomfortable and terrible of my life.  I guess just live one day at a time and hope the Prednisone and whatever biological drug I’ll need to take, would finally make a difference in my life for good.  

Thank you again! 

Laura

Dear Laura,

It's hard for people who aren't in our situation to understand the reality we live with.   Like "accidents".   I used to love hiking and just walking for exercise but because of perpetual, serious diaper rash walking is painful and three blocks is often my maximum.  

I had always had high energy and a sense of adventure but the colitis drained me.   It started in 1990 and I was in and out of remission for ten years. After multiple hospital stays,  with my weight dropping to 90 pounds, a total lack of energy, and intravenous feeding, the "operation" seemed like my last resort.  That was in 2001.

It DID make a difference and I'm glad that I had it.  My doctor said I had a choice: the operation or a funeral.   I still have lots of stools a day but I can actually go four or more hours during the day without running to the bathroom.  I can sit through a two-hour class or a movie and work in the garden.  I did get my life back, more or less.  I also can eat almost everything but try to avoid high fiber foods.

Do you have certain times of day when you feel better?  When do you have the most energy?  What gives you pleasure?  Do you get out of the house?  

Since I retired I've been more involved with volunteer activities, belong to a study-discussion group to socialize and keep my brain cells challenged, and  do "projects".  I recommend it.  By the way, I'm about to celebrate my 83rd birthday in two weeks.

Have you considered seeing a mental health therapist?  Mine really helped me get through the worst of my "downers" when I realized I would never be "normal" again.  I try my best to stay positive.  I know it's not easy to do when your body has let you down.

Toni

Dear Toni, 

After reading your story I feel so close to you.  I’m so sorry you had to go through all that suffering, but glad you found your way to live your life and enjoy what you do.  That’s what it is missing in mine.  I can’t find a way yet.  Not physically, not emotionally because of my JPouch “issues”. 

My UC started when I was 21 years old.  I spent half of my life in hospitals (4 or more relapses per year).   Had my two hips replaced when I was on my 20’s (Prednisone excess).  Finally after I tried pretty much everything, I “qualified” for the JPouch 5 years ago. I was so hopeful.  My JPouch worked beautifully the first 5 months.  Then blockages, Pouchitis, accidents, pain, so many nights  laying on the toilet floor, ER nights,  torturing NG tubes, etc.  Finally I had to quit my job (with kids with special needs) that I loved so much because I just couldn’t function as a person.

Right now I’m trying to put myself together again since I was released from the hospital one week ago because of a serious blockage.  Usually the afternoon is the best part of my day.  I’m in a very strict diet now.  Can’t eat much of anything. I really don’t go out when I’m sick, became a hermit. I had the best psychotherapist who helped me so much to deal with my issues, but unfortunately she retired and I still looking for one who who can help me as well. 

When I’m healthy, I enjoy spending time with my husband and cute three dogs, going out to eat, and travel overseas to spend time with my family.  I’m willing to get better because I’m an animal lover and enjoy volunteer at a dog shelter.  At my 48 years old,  I still hope I can find a bit of “normality” in my life, and keep  fighting to not lose my JPouch.

Thank you again for taking time to write to me.  I’m sure you are a compassionate and kind person and it make me feel so happy when a “poucher fellow” is doing well after all we have to deal.  You deserve to enjoy life indeed!  Keep it up! 

Laura

Dear Laura,

I totally empathize with the life you've had with UC and post-operatively, including hip replacements so young. 

I had two separate "attacks" of UC.  The first was in the early 1990's (in my 50's)and I went into partial remission for a couple of years.  Then it came back with a vengeance which led to getting the pouch.  Of course I worried about the impact of prednisone on my bones and mine have lost serious density.  I ultimately had to give up most activities that threatened them.

Two years ago my doctor prescribed Forteo, which is a drug for treating osteoporosis and is incredibly expensive.   I've also used Prolia, which is also expensive.

I'm not sure either helped but I was willing to try anything that might let me live a moderately active life and not worry about breaking bones.

The other problem you mention: blockage.  I've had three episodes.  The first time it happened I was thrilled that I hadn't pooped for a long time, until it started to hurt and I ended up in the emergency room the hospital with the NG tube.

On a positive note, you and I try hard to keep a positive attitude.  I think that's the best medicine.  You travel (as do I) and enjoy animals and have a supportive husband.  I'm divorced but I have two great children and 4 fabulous grandkids.  They all understand when grandma makes a mad dash for the bathroom.

Toni

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