Chronic Pouchitis after colectomy

Hello all,

I am posting for my husband, who was dx'd with UC 10 years ago, and had a total colectomy. He was on Flagyl for 2-3 years after the surgery to manage the bacterial infections in the pouch, but managed to go off of it for nearly 5 years symptom free, until last March.

Last March, the pouchitis started to come back and he went to a new doctor (we're in a different area now than when he went through this the first time) who prescribed him flagyl. He's been on it once per day since, and it manages the symptoms just fine, but he can't seem to go off it completely without the pouchitis returning. His doctor is concerned about him continuing the antibiotics because of possible resistance, but my husband is absolutely adamament about trying everything and everything to avoid having the pouch removed and having an ostomy bag again.

Has anyone here been through this? We are looking for any possible suggestions for managing the pouchitis so that he get get off of the Flagyl again and avoid surgery/ostomy bag. He's understandably terrified of going through that again.

Thanks so much

Thank you so much Suebear! He's so anxious about this and I hate seeing him like this. Especially since we are already worrying about the birth of our first child in September!

 Hi people,

 

I was diagnosed with u/colitis in 1995. I'm a guy and now 33 years old. I had emergency surgery in 2006 and was left with a mucus fistular and ileostomy. In 07 mucus fistular was removed then full reversal in Nov 2008 and then immediately contracted Pouchitis.

Since the reversal i have had none stop chronic pouchitis. My life has been turned on it's head. My whole health has been affected. 1st i lost 3st in first 4 months. I hve been on ciprofloxicin and Metronidizole along with codeine fosphate constantly since then. I also take loperimide (immodium) 2mg x 12 per day along with ferrus sulphate for my now enemia.

Nothing and i mean nothing has worked and i am now being lined up to have the ileostomy put back. I feel distraught as i really don't want to go through that again but i've been advised i'm gunna die otherwise. I go to the toilet for bowel movements 12-15 times per day, sometimes bleed and food stays in me no longer than 20 minutes. I feel weak ,dizzy and generally ill all day everyday. I have tried VSL3# that didn't work just caused a lot of bleeding. I have just been on infusions of Infliximab but that didn't work either. My last major treatment which isn't working is fortnightly injections of Humira (adulimamab). along with all the tablets i have listed above a day. I can't go anywhere, i have to eat very dry bland foods, i can't drink any alcohol or fizzy drinks, no fruit ,no veg,no dairy products whatsoever. No matter what foods hosp have told me to eat nothing has helped me. Constant going to the toilet is a nightmare. My rectum is in permanent pain and i'm just generally ill healthed from it all. I hope to god that when the ileostomy is back then i have a bit of relief and then maybe a reversal can go ahead again somewhere down the line.

 

Thanks guys.

Do a search for "probiotics and pouchitis." There's a ton of info out there, including medical studies that prove its effectiveness.

aren't there "tricks" such as standing up while pooping to help the pouch empty more completely? doesn't taking probiotics help combat the potentially nasty bacteria from multiplying? just trying to put some positivity into this as i may end up getting a j-pouch and don't want to imagine all the crappy things that can occur afterwards. it seems like most people are happy with theirs and don't have too many complications.

More and more cases of chronic PI are being diagnosed as Crohn's. And like UC, some chronic pouchitis sufferers can manage fine on antibiotics, others cannot so going back to an ostomy is a viable solution to gaining quality of life.

Sue

I'm very sorry some of you have had so many problems after surgery.
On this forum, whenever we try to have an open, honest discussion about the perils of surgery, the pro surgery folks always shout us down.
I encourage you people who have had issues to post here so we can get at the truth, which seems so elusive.
It's so crucial for we who are still dealing with UC to have balanced information to make the right decisions when doctors or well meaning family members say "oh well, just have your colon out, then you are cured".
Many of the posts here and my gut feeling say otherwise.

Pask,
Have you been rediagnosed with Crohn's? The fistula would indicate more of a CD diagnosis not a UC one? Have you tried all of the antibiotic treatments for "pouchitis"?? I think you should post on jpouch.org - there are others who've been in your situation and can give you advice. I think some have gone back to an ostomy and are doing really well but there may be other things for you to try. Good luck.

Frustrated Man
my naturpath gave me a diet as I was constantly on antiboitics for UTI and never in remission with my UC, meds did not work, but I went on this diet and 7 weeks in (gave up all meds in week 3, still had symptoms) got into remission and am still there.

I wonder if the food side of this diet could help you also the rejuven x would help heal the cells in your bowel and eintestines which sound like they are constantly unhappy, and vital greens might give you some energy. I have taken the AVOID as DONT EAT. This naturopath did tthis all for me by email and post and was the best move I have ever made. I understand you may think I am silly as I dont have a pouch but it is still you digestive system and intestines and pooh that is suffering along with the pouchitis. I think they are right about the priobotics but you need to be on good quality stuff all the way like organic and filtered water no processed food or microwaved food etc. I hope you get better and I am not the most religious person in the world but I will say a prayer for you

mum of 3
Subject: Diet by Naturopath, Janelle Camuglia

Ulcerative Colitis

Diet:-

1) Eat small regular meals (5-6 small meals daily)
2) Include some protein in each meal. Choose from:- eggs, organic chicken, organic turkey, steamed or grilled fish. (I being Annette actually poach Tasmanian Salmon) Limit consumption of beef and pork avoid mince sausages, deli meats, smoked meats, cured meats, salami, shellfish, prawn, crab, oyster, mussels, smoked fish and canned fish.
3) Eat plenty of fresh vegetables. If you can’t tolerate them raw, steam them. You want to aim for 3-6 cups of vegetables daily. Avoid pickled or canned vegetables. Limit Potato and corn. Eat Organic where possible. Do not microwave or fry vegetables. Lightly steamed is best./
4) Limit fruit to 2 serves daily due to its high sugar content. Consume fresh fruit rather than tinned and eat organic where possible. Avoid acidic fruits oranges and grapefruits.
5) Avoid lactose containing foods, milk, ice-cream, cottage cheese.
6) Avoid gluten containing foods. Bread, wheat, pasta, couscous, rye, cakes, biscuits, cereals, muesli bars. Many processed foods contain wheat gluten. You will need to check labels and look for ones that say ‘Gluten free’. The possible exception here is oats which are mucopolysacchorides and may help with mucous membrane repair.
7) Grains to include would be brown rice, barley, millet, buckwheat, replace bread with rice cakes or gluten free breads. Limit grains to 1 serve daily (about 30grams).
8) Drink plenty of water 1.5-2 liters daily. (filtered is best) Other drinks could include cabbage juice 9which has ulcer healing properties)
, carrot juice and green drinks such as barley grass or spirulina, or vital greens. Ginger is a powerfully anti-inflammatory, so ginger tea could be useful. ( I Annette use a Ginger tea from the Chinese shop that comes in a glass jar and in a jelly type format and you keep it in the fridge after opening it is Ginger and Honey tea).
9) Avoid carbonated soft drinks, spicy foods and anything containing caffeine, as these can irritate the colon.
10) Use sea salt rather than table salt. Avoid processed dressings/sauces. As condiments use home - made dressings, tahini, olive oil, lemon juice, hommous home-made guacamole.

Have for Breakfast make up a shake. Add Rejuven X and Vital greens to 300mls or rice milk. For the first 2 weeks start with ½ scoop of rejuven x and 1 teaspoon of vital greens then increase to 1 scoop of rejuven x and 2 teaspoons of vital greens. Also take Boswellia complex for first 2 weeks 1 tablet at breakfast, lunch, dinner and bedtime then drop back to 1 tablet breakfast and dinner.

Initially if the colon is very irritated have liquid meals, cook meat and vegetables then puree them into soup.

Rejuven X is made by BIOCeuticals and is a vegetarian formula I have it in 700gm containers and once opened keep it in the fridge.
Vital Greens in a phyto-nutrient superfood and I have it in a 600gm container and must be kept in the fridge once opened.
Boswellia complex is made by MEDI HERB comes in a 60 tablet bottle and is for practitioner dispensing only. It strengthens or rejuvenates the muscles I looked it up on line.

mom of 3

Your story about diet and bringing disease in control is very impressive. I am 39 yrs old male with pancolitis, (dx in 2010 ) on Remicade finally after all the tips and tricks about diet and alternate medicine.
I do follow some diet also but still have about 6-7 BM with urgency but have formed stool due to Remicade, but quality of life is like crap. I thought surgery can put me on other side, but i read different stories here which sets me back about surgery.
I can use your or anyones help to guide me properly about the diet and supplements.
I can be reached at [email protected], as I am not on forums as its depressing to read stories about people having tuff times.

Any help would be greatly appreciated guys.
Desperately seeking remission. Have lots of responsibility to discharge and requires me to travel, but can't.
Awaiting help