Severe pouchitis-next step Remicade

I today started Humira to attempt to cool my new issues that include a fistula. Just... A ball of IBD type stuff, but not really pouchitis, though biopsies always read as such, though mild. I actually have "decent" pouch function "most" of the time, but have developed other things that lead my GI to suspect enough to give a biologic a whirl.

My kiddo is in Humira and MTX for her indeterminate colitis.

My hubby is soon to start Humira for his psoriatic arthritis because his Enbrel is failing him slowly, after 3 years.

I'm hoping for relief. I hope you get some, too. I'd give it a chance, since you're running out of options.

Let us know the results because I think Remicade could be in my future as well.

What a rough road! I'm sorry that the antibiotics aren't working and giving you those side effects. I'm sorry for your pain!

It took me a long time to to sign up for Remicade because of the fear of it all. I was put on it because my diagnosis was changed to Crohn's and I had r/v fistulas and cuffitis (and some pouchitis). They do a blood test with each infusion and by the second or third my inflammation markers were perfect! They said I could be a poster patient for Remicade since I responded so well to it. My fistulas (with setons at the time) seemed under control and all was well. It was actually pretty convenient to only have to go every 8 weeks. I got caught up on my reading or napping during the time in the infusion center.

I had to take Tylenol as prep for the infusions (sometimes I got a headache). A nurse is with you the whole time and checks how you're feeling and reacting to the infusion that day.

It's insanely expensive, however my health insurance covered it. It had to pre certified and all ahead of time. Not sure how I would have paid for it if my insurance didn't cover it.

I did well on it for two years. However, even after upping my dosage to the highest and increasing the frequency to every 6-7 weeks, I was starting to have issues again. Added Flagyl and Cipro back in. Unfortunately, I developed a lung mass somehow. It was never diagnosed as anything (even after bronchoscopy), but it meant I couldn't return to Remicade.

In hindsight, I would do Remicade again because it really did give me a healthy stretch of time. I was also healthy enough on Remicade to get pregnant. I may not have been able to have my son if I was too sick. I'm so thankful to have him!

Remicade is a hard decision and it's why the doctors save it for a last resort. I really did agonize over it for months! Feel free to PM me also if you have other specific questions. Keep praying. I felt peaceful about my decision in the end...and prayed long and hard at every infusion!
Laura

The infusion place I went to called remicade... LIQUID GOLD! Cost is way more than that. I made sure they put every drop in me. It was from I remember above the 7 grand mark for each infusion. I was given a shot of liquid benadryl. (burn... boy did that burn having that injected) Made you sleepy so the three hour process was kinda relaxing. Just sit there and doze while watching a movie.
Richard.

When antbiotics failed to treat my refractory pouchitis, our next step was to add Entocort/budesonide, because I couldn't retain enemas due to may damaged sphincters post-fistula surgery. I always responded well to it, but could never wean all the way off it.

Then I almost went to Remicade or Humira next, but instead opted for Immuran (had never been on this with UC-colon was removed before it was available)-so far it has been working wonders for me (still also on antibiotics and a half dose of Entocort as I slowly wean off this).

If/when this stops, I will have to decide between remicade or Humira.

The biologics definitely work for some with Chronic refractory pouchitis. My docs said since I had shown some remission on entocort (suggesting that suppressing my immune system seemed to help, even though I couldn't even wean off them all the way), he gave me about a 50% chance the biologics might work.

Thank you for all the replies. It is so helpful to have support. We are in the process of getting pre-auth for insurance but hopefully will start next week. I am scared but hopeful. I will let you know how the first round goes. I guess Immuran or Humira are options that I can try too, though my dr favors Remicade because of it's fistula healing success rates.

I totally respect your perserverence. My perspective comes from someone who is only 8 weeks post takedown, but as such the memory of the ostomy and how I felt with it is fresh in my mind. Are you considering that as an option. Is there a medical reason you wouldnt want to go that route. My only worry would be that my second stoma and skin might not be as good as my first which was open end, but I also wonder why I liked it so much and if my state of mind would be the same the second time around. Just feel I might not have the best of luck with this based on how I feel now.

A permanent ileostomy is always in the back of my mind. The 3 months I had one before take-down was a low time in my life. At 27 it was so hard to deal with. I cried every time I had to change the seal. I feel like I need to try all medical options first. Some make it seem that if I go to the bag I won't have inflammation anymore? Couldn't I still have problems? It seems like the benefit would be having continence. It also sounds like the surgery to remove the jpouch is very serious. Not ready for that but would take it over being this sick for the rest of my life.

Keep us posted on how you do on Remicade.

I tried everything medically first also. I also adjusted my diet significantly. There were many surgical procedures for my r/v fistulas and strictures and abscesses also. I wanted to keep my jpouch more than anything! To me, dealing with chronic issues with the pouch in sounded better than the future potential problems AND an ileostomy. However, I ran out of medical options and I was at the last, final resort of a permanent ileostomy. I had my temporary one at 19 and I was just like you- I cried every time I had to change the wafer and counted every day until my reconnect. I hated the ileostomy and said it would be the end of the world for me to go back to it. However, here I am now at 35 with a 5 month old permanent ileostomy and it's so much better than I remember it. It wasn't the end of the world after all! But, as you said, it's a major, major surgery to remove the jpouch and (to me) only worth if you have tried everything else first. I didn't want to regret not trying all I could first. Permanent is permanent.

I hope that Remicade does the trick for you. My body usually responded quickly within the first few days post infusion. I hope you too see improvement right away.
Laura

Well I had my first infusion on Weds. Thankfully I didn't experience any side effects but it did make me feel exhausted for a couple days. They said it will probably take at least 2-3 infusions before it really takes effect in healing the inflammation. I do notice headache and slight nausea beginning tonight and unfortunately the stool seems really foul, not sure if that is related to the meds? And unfortunately I have developed a hemorrhoid so I am up tonight with my ass burning! It's always something Feeling hopeful that this will help. Excited to get my second dose in 2 weeks and praying for results.

The foul smelling stool is likely due to the bacterial overgrowth at the root of the pouchitis, because the Meds have not taken effect yet. I would not be too concerned about it because if the Meds work, it will go away.

Remicade after two doses put me into a complete remission but I had to stop cause of neuro side effects. I was in remission for almost three years after.

llykat what do you mean by nuero effects.

I lost feeling in my legs, oh that was fun, and I was so dizzy. Took 3 months to get out of my system. It also made me extremely constipated. I'm no longer a candidate for any bio as I had melanoma in the past. I feel doomed.

alleykat have you seen a therapist one that can prescribe drugs to deal with your feelings of hopelessness..yes your problems are real but your mental state is too..and you might need to get that controlled so you may deal with your intestinal issues with the best frame of mind that is possible under the circumstances..its amazing how the wrong frame of mind makes everything seem worse..been there done that!!!!see if you can get help with your paying for your antibiotics i suggested a number to call...

have you tried the rotating of antibiotics?seems to me you go with one till it stops working approach?

Thanks Rebbe, I already upped my anti depressant. Sorry, I didn't realize I was posting so down. Thanks for being a friend and concerned. Lots of stressful stuff going on right now, probably not helping, but yes, I'm sick of this whole situation. I have so much to do and I'm stuck in bed today.

Remicade is def a silver bullet but be careful with developing antibodies to it. I went into anaphylactic shock after getting Remicade because of the antibodies I developed to it. Just make sure your doctor does regular blood work to check for that.

what are the symptoms of pouchitis?