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25 replies

On going pouchitis

JF john firthMember

I have never posted before. But I have suffered with pouchitis over the last 15 years I have  been though hell tried everything possible, been on antibiotics and Loperamide for the past 15 years. I will not go into detail about my history as it would that too long.

I was told many years ago that the doctors could do nothing more for me, and the only way forward would be to go back to the stoma. I was at the point of making an appointment to arrange having my stoma back, when just by chance I found this article on the internet. Charcoal Tablets? I have been taking them for over 6 weeks and cannot believe the difference in my condition, not by any means perfect but made MY life is far  more bear able than any time over the last 15 years. I am not saying it is a cure but it helped me it may help you?

 

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JF john firthMember
Originally Posted by Scott F:

I'm glad the charcoal is helping you. It suggests that there might possibly be some dietary change that would do the trick, too. What diets have you tried over the years?

 

Be careful to space the charcoal well away from any medications. Good luck!

 

 You ask what diets have I tried over the years?  I would say over the 15 years what diets I haven’t tried would be more accurate. I still have to be very careful with everything I eat, very boring diet having to eat everything as dry as possible Many Thanks John

U UCBlokeMember

Hi John,

Thanks for sharing this info. I have just picked up my bottle of Charcoal tablets from H&B i hear you have been on them 6 weeks, how long before you started noticing a difference. With anythhing with UC/Jpouch/pouchitis.. nothing is black and white i know!!

 

I had my takedown in March, been on a high dosage of immodium, Codein & Cipro ever since.. improvement yes, but slightly.. maybe this is what i need.

JF john firthMember

 

 
Thanks for your post as you say everyone is different. I am no expert on pouchitis, and had more of my share over the past 15 years. You say you only had your takedown in March this year ? If that is true it's only early days for you, it Will take a long long time to start feeling well again, like it would with any major surgery, so you need to be patient. Well getting back to the charcoal tablets I am still taking them, I noticed the difference in the first few days, stopped most of the bloating and the stomach pains, stopped a lot of the urgency for using or finding toilets. I still have bad days but seem to get more good days, so as for myself I am very pleased with the outcome. Be careful when taking the charcoal tablet  if taking other medications follow the instructions. I hope this helped you and wish you all the best in the near future. If you need anything else feel free to ask.
U UCBlokeMember

Thanks for your reply!

15 years with a pouch i would have thought could have only been a success!

either way, you seem to be hanging in there.

 

Yeah March of this year, ive read lots of people only using the loo 5times per day after leaving the hospital, were as i am and alway have been in double figures.

ill be cautious, thanks for your advice agian..

Marty

AL Ape LinemanMember
I haven't been really into the natural remedies. But my wife introduced me to dōTerra for my pouchitis and incontinence. Natural oils and herb capsules that serve as probiotics and support healthy cell proliferation.

It takes about a month to notice results. Been taking for about four months. Almost symptom free.

dōTerra- micro plex MVp, alpha CRS+, xEOmega, digestZen terrazyme, digestZen oil
A AllinMember

Have had pouchitis since my take down in 2012 tryed all the probiotics and natural remedies just had a scope and discovered inflammation in pouch started taking asicole 3X a day along with charcoal tabs 2ea 2 times a day and 500 mg flagual a day this is the best i have been yet from 15 to 20 times a day thru the night to 5 to 10 a day sleeping 4 to5 hours at a time although none of these things worked individually together they have made a big difference for the first time in a long time . I was just about ready to go for the bag .My doctor was very good his plan was to start from scratch and try different things till we exhausted all options first .So far so good I am very grateful that my doc took the time and this approach .Hope this helps anybody with the same stubborn pouchitis symptoms.                

K ks1905Member
AllyKat posted:

15 years pouchitis lead to another ostomy. Just reversed, taking Entyvio, 2 infusions, scope is normal, going for third today then every 2 months. When normal I can eat anything.

AllyKat,

How are your current symptoms with Entyvio?  I am currently on Cimzia and antibiotics but I'm no better since starting Cimzia and I get the same peripheral neuropathy from Cimzia that I get from all the other anti-tnf biologicals.

My GI offered me Stelara or Entyvio; I chose Stelara but we are still fighting it out with my insurance company...as expected.   

K ks1905Member
ks1905 posted:
AllyKat posted:

15 years pouchitis lead to another ostomy. Just reversed, taking Entyvio, 2 infusions, scope is normal, going for third today then every 2 months. When normal I can eat anything.

AllyKat,

How are your current symptoms with Entyvio?  I am currently on Cimzia and antibiotics but I'm no better since starting Cimzia and I get the same peripheral neuropathy from Cimzia that I get from all the other anti-tnf biologicals.

My GI offered me Stelara or Entyvio; I chose Stelara but we are still fighting it out with my insurance company...as expected.   

AllyKat,

I took my first regular (non-loading dose) of Cimzia on the 23rd and it has seemed to put me into remission, no more hip-pain and much easier to empty my pouch without any diarrhea.   Before this dose Cimzia really did nothing for me except for the side-effect of peripheral neuropathy (which wasn't as bad as prior neuropathies from other anti-tnfs).

Are you taking any antibiotics with the Entyvio?

AllyKatAllyKatMember

I was doing great then got the norovirus last week and my system is a mess. I can't get things under control. Entyvio targets the receptors in the gut that target viruses. Everyone else got better except me!�� I hope it's just time at this point. No I'm not taking any antibiotics but if this is not better by tomorrow I will have to see the GI next week. 

right now trying all the over the counter stuff I can get my hands on. 

Sorry your getting neurpathies with he bios. I could not take Remicade. 

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