New medicine for pouchitis

My doctor is offering up what I believe is the serum-derived bovine immunoglobulin/protein isolate (SBI)  as treatment for pouchitis. Trying to track him down to confirm the name. 

I would really like to hear if anyone has any personal experience. AllyKat, it sounds like you were on the verge of trying it out about a year ago. Hopefully, it is giving you some relief or you have found a suitable alternative.

This article is from 12/15/2015. Shows remission of pouchitis symptoms in a very limited study.

Novel Medical Food Relieves Pouchitis
Nine out of 10 patients experienced clinical remission
http://www.medpagetoday.com/Me...gCoverage/AIBD/55197

Been there, done it, did not work for me.

Allykat,

i just got prescribed the Enteragam. I haven't had time to get it filled yet. I wanted to go to their website to print the discount card. It says you only have to pay up to $25. If you pay more, you can send in for the difference. We'll see.

I still have some. I might give it a try again. I was in a bad flare when I first got it. Let us know how it works for you. 

interested on hearing if this helps anyone? keep us posted

allykat i hear you as always..i am going on 10 years with this dysfunctional pouch..things work for a time and then they don`t..its apparent ally very complicated and no one has figured it out for people like us..i too as you know have had some success with various things..the most successful the diet scd for 6 months i was free of antibiotics and as good as it was going to get and just like that it stopped!!! i rotate antibiotics because i have to but over the years they all have become less effective.. a good day may still means really  going a lot and because of that having itching and irritation that requires wipes  and ointment  almost each time..sometimes i soldier on pretty good but when i have other things also going south it really makes it pretty hard to stay up...i no longer am carb free just gluten free..figured i would stick with eliminating w heat and potatoes..and i do watch my sugar but am not completely sugar free..at least by doing that i cut down on my consumption of nuts which i think had their own set of problems..not as digestible and caused me more issues coming out..i do however with my newer diet of allowing  carbs such as rice and gluten free bread find my output more solid which in turns helps somewhat with itching etc..i am freer with fats as well...

nothing new has really come down the pike in ten years and its really depressing...i am older than you and wondering if anything will in my life time

do have a question for you that puzzles me you say your doctors refuse to let you give up your pouch..i cannot understand that...i am sure if i persisted to want to have pouch removed i would find doctors to do it..what am i missing here in what you say..i would think they would if you wanted it for better quality of life be willing to do it..

Rebecca, as you know pouch removal is not to be taken lightly. That said after my last attack that left me with a ostomy for a few months I had a heart to heart talk with all 3 doctors, the surgeon, and 2 GI doctors. Basically I was given two choices, pouch removal or getting reversed and going on a new bio drug. Finally, after 15 years they realized there was not much more anyone could do. 

But to be honest i was so unhappy with the ostomy. I hated it more this time around than the first. Not that I'm so happy being on a bio drug but it so far has given me back my quality of life and for that I am so grateful that my Drs did not rush all these years to remove my pouch. I don't know how long this med will work, will it give me cancer, but the risks are low so for now life is great, finally. Pouch removal might still be in my future if I don't die from something else first at this point.

You might want to look in Entyvio. 

Too bad your ileostomy didn't give you relief AllyKat.  It's hard to remember all that is going on with each other for me.  I think I was diverted to my Permanent ileo around the time you were using one too.  It took me months to get use to it and I still have difficulties with my skin from time to time.  Those times are getting further and further apart.  

I have scheduled my j-pouch removal in a month. I had recurring UTI's after the diversion surgeries and the antibiotics must have been helping with my j-pouch. Now that the UTI's are gone and I am no longer on antibiotics I know my j-pouch has to go.  I should have listened to my surgeon's suggestion to get it removed back when she diverted it. I am now mentally ready to get rid of it but am having a lot of anxiety about the surgical recovery.  Gotta do what we gotta do.

I hope the biologics work well and you never need to go to an ileo again!  

allykat again i hear you loud and clear.....truthfully i probable myself do whatever to avoid the ileo..in my case i never had one..i had a one step..so for me its just plain based on i just cannot see myself going there ever  and to be honest i figure with my luck i probably would be one that has the skin and leak issues .. do not know enough about  k pouch but thinking that has same issues as bag outside?there is something else BRAT(or something like that)..were they considerations?

so you are on biologic called entyvio? and you say its working for you? i think thats good and i probably would be going there myself rather than ileo option.

.for now antibiotic rotation works more or less..it keep changing but seem to be in a three week change over now..i live with the times i go a lot because its usually sometimes in early morning ,not always  or at night mostly..mid day usually ok..  but even then not consistent every day..use to getting up various times during night..itching is  troublesome but not all day everyday..burning or acid feeling and irritation  sometimes not all the time..so as long as its not all constant i can live with it..i use wipes when home and ointment  but i just deal with that..for me it all comes down to antibiotics not working  for now and then i am dead meat.. going constantly ,i have terrible pain and elimination like broken glass coming out and its unbearable..so bottom line i live with all above except the unbearable pain.. rather save the option of entyvio etc for if and when antibiotics stop being bearable i guess.. and or i get nasty scopes..thinking you have had what you call flares that are uncontrollable?

wishing you only what i would wish for myself...sending my best wishes this peace goes on for you a long time..

keep us updated and i really wish you good luck with it..

Thanks Rebbe

TE Marie, I'm sorry that you will be going thru another surgery and wish you the best of luck. I know we had different pouch issues. I believe being mentally ready is the first and most important step in your recovery . 

I feel for everyone going through this. I tried for 5 years and after a year started going to the Mayo Clinic.  I could not imagine better care than I've had there. 

I had chronic cuffitis  and pouchitis with  Canassa suppositories along with rotating antibiotics, changing my diet and eventually structures all the time. After dilations with 2 pouchoscopes my GI arranged a consult with my surgeon. She dilated it under anesthesia but thought I would eventually need to excise it. Her dilation lasted a week before I was back to performing enemas 5 or do times a day. Plus I have had chronic pain requiring narcotics every since the surgeries. I wasn't a candidate for pouch advancement either. 

I relied on every one on here that a permanent ileostomy would be better than my temp one was and had surgery diverting me from using my j-pouch to a permanent ileostomy.  I have sensitive skin. There are brands of makeup I can't wear etc. I had problems for a few months but am doing well now. Now I am having her remove my j-pouch.  With the pain and discharge I know I'm having some kind of IBD going on. People who get j-pouches for reasons other than IBD don't get cuffitis or pouchitis. I've referenced a study about this on here many times. The conclusion was that what ever is going on in our pouches is some kind of IBD and not necessarily crohn's. Something not yet defined and named. Doctors at the Cleveland Clinic were some of those conducting the study. 

It's scary but so was the removal of our colons.  When the quality of my life reached zero then there were 2 alternatives for me, to live or die. I chose life. It's not perfect but better than I thought it would be. Having an ileostomy is not the end of the world. I wish I had ditched it years ago. 

Te Marie

Did you go to the Mayo Clinic in Rochester, Mn or at another of their locations.

Thanks

Has anyone used tincture of opium for severe chronic pouchitis resultingin at least 20 BMs a day with urgency, cramps, and abdominal pain? I am overdosing on Immodium with ver little help. Is there any other medicaitron that works?  This is the worst bout of pouchitis I have ever had.  It is finally getting debilitating.  I refuse to get a pouch reversal which i think can exchange one set of problems for perhaps an even worse set. 

Have you tried lomotil? Many find that it works better than Imodium, even though they are similar.

Jan

Msshoe, please get to a doctor. I almost lost my pouch twice due to serve chronic pouchitis. 

Yes! And I forgot to ask. Are you on antibiotics for pouchitis? Imodium does not treat pouchitis. It is mostly for people with high output, but not pouchitis itself.

Jan

Thanks for the advice.  The doc just put me on Lomotil today.  My brother-in-law, who is a surgeon, suggested Metamucil. I took some last night, and it worked like a miracle cure.  Not so much tonight so I tried it again along with 2 Lomotil.  It's still a work in progress. I really do not want an ileostomy, but the GI doc assures me that with carefully selected patients it works great, and gives people a new lease on life.   My brother-in-law disagrees.  As I said, a continuing saga.  I forgot, I have taken Cipro and Flagyl in the past with some moderate relief.  Not as much lately as in the past.

Allykat, 

You sound like youv'e been to hell and back like me and others. You clearly have no luck with pharmacuticals so I am going to share what my ND has me on. 

Blood type diet,

vitamist vitamins - A lifesaver!!!

Before each meal 1/2 tsp of psyillum husk & slippery elm powder in water. 

A lot of lemon water. 

Klebsiella bacteria in my stool culture( mycorpryl 680, RF Plus, collidial silver, grapefruit seed extract, gentian, polyflora A, & Baeillus 7-) she makes this probiotic with liquid...

prednisone, lomotil & canassa (still mixing eastern & western medicine)

Thanks Kimandor,

Acutally Entyvio is working or at least still working for now. When I see my new functional med doc I'll run these by her.

I never had my stool cultured cause my insurance does not cover, maybe I'll go for it now, but my son did and he also had something, when he had some kind of flare up, not sure if it's UC or what but he's been fine since.  I forgot what he took for it. 

I use a whole food plant based vitamin. Plus a lot of other stuff I'm told I'm deficient  in. 

I was told to go gulten free, that did nothing. Did Paleo for 6 months. 

Im sorry your on Predisone

yes East mets West it's a challenge I'd like to forget about

Msshoe, 

Have you tried psyllium husk powder with water before you drink or eat anything. It actually binds all the water in intestines so you have some relief while the lomotil slows down the digestion. I could not live with out it. 20 bm is way to much. I have 8-12 and I find that to be so annoying but its manageable because a most of them are in the morning. You also need to get the inflammation down with the right diet. I overdose on tumeric and it helps a lot when I take it in a spoon of honey or as a tea with almond milk. 

Hope this helps. 

been having an unusually good spell last 6 months..no rhyme or reason..alternating my 4 antibiotics as always but they have each lasted 30 days and i just switch instead of 2 weeks to three weeks....do not count how many times i go but i know its decreased a lot.. because i do not seem to have the need to go and go back again and again..or have those awful feeling of not releases everything..havent had any burning episodes, in addition i have not been consistent on my vitamins or probiotics,i no longer am all starch free and sugar free.. i have however in past few months added physillium husk to firm output..it seems to cut down on my itching and irritation..i have actually been extremely stressed since dec. because my husband was diagnosed with serious illness and just recently was in hospital for operation..

the reason i am writing this is yes i am enjoying this break in my 11 year struggle with my pouch but i seriously have no idea why with all the above this is happening..hoping it continues of course ..but i once had a spell of 6 months when i thought my diet was working and actually was off antibiotic..and then it just stopped working...

so this is my second best time i can remember..what in the world does it all mean....and could it last????? i take it a day at a time but i swear this pouch just has a life or mind of its own..i have not gone for an exam in two years but am signed up for one in june..had this terrible thought it could trigger it going bad again..anyone else ever have that happen??

Rebbe,

im so sorry to read about your husband

(((hugs)))

Sorry for what you're going thru. I have come to the fact that we will have periods of time when our body just acts up, & we just need to apply our knowledge on getting thru it.

AllyKat posted:

Rebbe,

im so sorry to read about your husband

(((hugs)))

thank you allykat..its been really frightening..but the tumor was removed from his stomach and he is recovering..

Rebecca, 

First, I'm sorry to hear about your husband and I'm glad he's doing OK and on the recovery side of things. I think it is more stressful to deal with health problems of close family members than yourself. It is such a helpless feeling. 

I agree that the j-pouch is a fickle thing. This is why I am pretty reticent to recommend one thing over another for pouch maintenance. Even when you think you are golden and found the magic solution, it can lose its luster at any time. So, I settle for "good enough" rather than perfect.

Perhaps for you, stress is a good thing, flooding your system with just enough cortisol and adrenaline to make things run smoothly?! 

Jan

Almost the last thing before ileostomy.  My doc thinks I may have auto-immune pouchitis so  I will be going on Remicade infusion.  I hope it works. As much as I hate needles, I hate pouchitis worse.  I agree that what works for one may not work for another. We all have to find our own best remedy and hope it lasts.

Welcome to the club! I just started Remicade last month.

Jan

I'm sorry I keep posting this on the different threads. 

I got diagnosed with irratractible pouchitits in 2000. Tried every antibiotic, including Cipro, Every single clinic I went to. Remicade, entyvio, everything I tried. I had a fistula so huge between my Anus and Scrotum that when I got it lanced, the surgeon was legitimately concerned. I was getting abscesses lanced twice a month.

As of today I have been 90 percent better for 1 yr. Firstly and most importantly, my intestines were not absorbing the antibiotics. I randomly started chewing them into paste, Augmentin and Cipro, and my abscesses and pouchitits cleared up in 3 days. Dr Peter Rubin in nyc said "your intestines are comprised and haven't been absorbing the antibiotics for the last 17 years". My scope showed no pouchitits. Some tissue is still damaged where the abscesses were, but nothing is active. Unfortunately I do need to take these antibiotics every day but I am considering trying some other methods. I just don't feel, whatever is out there, is strong enough to kill What's going on in my pouch. Rubin said I had been absorbing about 10 percent of these antibiotics since 2000, because after the jpouch surgery, my gut just doesn't absorb certain things.

Simithicone... I take about 10 gel caps right before meals. It wipes out gas. You know that horrible cramping we get? That's from gas in the inflamed area sometimes. My pouch has trouble passing gas.

This wipes that out.

I also use some other unorthodox methods. But science says whatever I'm doing is working. Please make sure you're digesting all your antibiotics. Take the liquid forms if you don't want to chew them up. If it doesn't help you within days, than I guess we all really have different causes for our chronic pouchitits.

Gb

 

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STORMWATCHMEMBER

11 MINUTES AGO

If you decide to take your antibiotics the way I described (Cipro tastes terrible. Augmentin tastes not so bad) and you improve within days, please let me know? Dr Peter Rubin confirmed my pouchitits is non-existent. The reason is the fact my intestines weren't absorbing antibiotics. I am 90 percent better now. That should motivate people at least to look into this with your doctor. I could not leave my bed a yr and a half ago. I had pouchitits and rectal abscess. I go to the bathroom about 3 times a day now. I am on a strict diet. When I go to the bathroom, I sit backwards on the toilet. I know that may sound silly, try it. I believe my pouch empties 20 x better this way. When I'm having trouble emptying my pouch and what's backed up in my small intestine, I give my self a colocort, just to flush out my pouch. I don't know why the liquid in fleet enema doesn't work, but it doesn't. Sometimes I need an enema. Sometimes I do not. I do believe part of our problems stem from not emptying our pouches completely.

Gb

  I've taken, but not chewed, Flagyl, Cipro, Levaquin, Amoxicillin, Tequin, Zyvox, Xifaxin, Augmentin, and many others I can't remember. 

Stormwatch- it would be better if you posted a link to your initial post, rather than copying and pasting this in so many threads. 

Rather than deleting or editing the redundant posts, I am reminding everyone that we like there not to be duplicate postings.

I understand the desire to "spread the word" about your findings, but it can have the opposite effect, as people may skip past new posts by you, assuming it is more of the same.

Thanks!

Jan

I've seen this Dr Rubin in the past so I know he is good but I'm curious how he determined you were not absorbing your meds? What kind of test did he use?i know from bloodwork I don't absorb certain vitamins but never heard anything about medication. 

Glad your doing better and found what works for you. 

Jan Dollar, how is the Remicade working so far?

Hard to say. I feel great for a day or two after the infusion, but I cannot say if it is the Remicade or the IV hydrocortisone they give me as a pre-med. My arthritis is much better than not being on any biologic, but about the same as the other meds. I have not stopped the antibiotics yet, since I am still in the induction period of Remicade. That will be my true test of pouchitis efficacy, since antibiotics keep my pouch pretty symptom free.

Jan

Good luck Jan! I hope it works as good as the Entyvio is for me!