Hi Chosen,

I have a ileostomy, awaiting a colectomy and reversal later this year. I am afraid of losing the bag - which has given me great control.  As for your symptoms, I really feel for you they seem terrible.  I hear it could take a year to feel normal again.  There are indeed dietary changes many here on the site have referenced that have helped.  How long are you post takedown.  What does your surgeon say?

I saw my GE last month when he diagnosed me with anal fissures.  I am post takedown approx. one year.  I’ve done extensive research on food & do my best to comply.  I’ve moved away can’t see the surgeon.  I still where adult diapers because when my j-pouch overflows, it is significant.  It is an ongoing condition which has led to psychosocial isolation & depression.  Don’t get me wrong, I have good days.  Even on good days, I’m afraid to leave my apartment because of the unpredictable nature of my condition.

It is encouraging, however, to chat with someone who can grasp even a little bit of what I’m experiencing ?

Thank

Hi Chosen- I wanted to let you know that my symptoms did subside substantially but it was a long road so don’t give up hope. I believe they told me 6 months for the pouch to settle in so I was discouraged when that came in went. It ended up being a little over the year mark (with the help of Imodium and lomotil regularly) before I felt my pouch was predictable. I did have to go dairy free and I was already gluten free because of celiac. As you learn what foods trigger your pouch to act up and eliminate them it helps a lot too. 

Thanks!  It’s encouraging to know that someone else has experienced the same things I have.

Chosen, perhaps you can find a knowledgeable gastroenterologist to help you figure out what’s wrong. My best guess is pouchitis, which is usually pretty easy to treat, but there are other possibilities, too.

Hi, Chosen. My recovery took a year after takedown. I was always worried about accidents and would wear liners whenever I was away from the house, and carried extra supplies and wet wipes in my bag, and experienced urgency and frequency. I know how frightening and stressful the thought of accidents can be. Turns out it was due to pouchitis, and a few doses of Ciproflaxin from my doctor fixed me. I had two bouts of severe pouchitis, both times the remedy was 14 day course of Cipro. 

Try not to be house-bound by it. Go out for very short periods of time. Empty your pouch first, know in advance where restrooms will be on your route. You don't have to wander far. I used to fear that my new life would always be unpredictable, but after a year or so my system matured, my j pouch figured out what to do, and I am managing really well, especially using food choices. You'll figure it out. It takes some pouchers longer than others, so remember not to measure your new system against others, but know that it can be an example. Were you very ill before surgery or on medication prior?  Pre-surgery health could affect your current recovery time. Don't give up. One day at a time. Stress and worry can cause your system to tie up in knots, not process food properly, resulting in gas, spasms, urgency. What do you eat in a day?

Thanks for the support.  I recently moved to another close city.  The gastroenterologist practice is in both cities but I had to change MDs.  I had my old MD for years & had a great relationship with him.  So far I haven’t clicked with my new GE.  I’ve researched what not to eat & try to stick with it.  I guess I’m just frustrated with the unpredictability of my jpouch.  I’m trying not to be housebound but I’m not confident enough to go far.  
I have a Service Dog, a Rhodesian Ridgeback.  She is a big, athletic, young dog & I haven’t had the confidence to take her out to the Dog Park for exercise.  I make sure she gets plenty of comfort walks.  She’s happy & well cared for: I’m just frustrated that I can’t give her the freedom to run & be a dog.

I’ve been frustrated because my GE’s office has not returned my calls over the last 4 weeks: so I had an MD, a friend who has followed my situation closely, contact my GE.  He explained that beyond the uncontrolled flow, there are times when the pain is so bad, that I have to take a pain killer in order for my sleeping medication to work.  Suddenly, my calls are answered & they’re looking into their schedule to see the earliest they can fit me in for a sigmoidoscopy.  I just have to arrange for a driver.  I guess it helps to have as MD for a friend.  THANKS to each of you who have reached out to me.  It’s good to know that there’s such compassionate support & direction here!

Please let us know what happens. It supports you and educates us.

I feel all your pain. Been there. First significant thing that made a difference to my quality-of-life, was to start taking the psyllium fiber husk and the brand name is Konsyl. It has no citric acid or flavors added, it’s highly recommended by all surgeons in my area. I take a heaping Teaspoon about 10 minutes before each meal. This helps bind liquids and slow things down.  If I’m going out I make sure not to ingest too many fats, oils, fried foods. This day the worst things for me are acidic foods like vinegar, eggs, coffee on an empty stomach, onion garlic spices, peppers.  Unfortunately those Thai restaurants are a Big no-no for me. Any foods that burn like spices onion garlic peppers are not good.  Try some herbs instead to make your food taste flavorful. Bring your own homemade dressing perhaps an avocado dressing or similar that has more herbs, no vinegars.  Eggs, acidic foods, carbonation, coffee are all acids and more likely will burn just like spices. I do want to cuppa coffee I make sure I take the fiber before hand. Chocolates cause diarrhea so maybe have one or two squares after a meal. Start with the above. You’re some things to try so you don’t get too hungry then start making a list of what works, specifically for you.

In order to get my fruits and not have pain I use non-dairy milk like oat milk put in a blender with strawberries, or you can try some mixed fruits but I would stay away from those with too many seeds or tough skins unless you have a really nice blender It’s again if they have too many skins or seeds be sure you take the fiber Powder drink beforehand.  It’s again, I tried many fiber options but the Konsyl brand was so much better than any Metamucil  The extra price was well worth it. You want to be able to feel good and have some control.  When I don’t feel full and I’m really hungry, I do pasta Dishes with steamed vegetables. I only eat soft to medium soft food. Soluble fiber instead of insoluble fiber’s   Soft peaches, pears, Ripe bananas, Put soft fruits in your oatmeal to help bind them. Stay away from acidic oils, use avocado oil, olive oil but don’t overdo on them   Red meat is a no-no, choose tilapia fillets, cod, steam them and they steamer with some steamed carrots, maybe some white potatoes   And above all, make sure you take the fiber before the meal about 10 minutes before hand.  When you’re on the road, or at a restaurant, you can always have some fiber tablets on hand so you aren’t dealing with the powders. Just keep some in your car or whatever it takes. As soon as you get to the restaurant wow the dinner is getting prepared, take some with your water. It’s not as good as the powder but it’s better than nothing  When ordering try to order steamed fish and vegetables stay away from non-soluble fiber until things get better and test those out one by one when you can.  This is an ongoing process, I’ve had it done at least 15 years ago but these made huge differences in my ability to feel like I could live a normal life.  

You Read all the time about how high fiber diet’s are the way to go, whole grains, but realize your situation is different. Soft or medium fiber foods work better and if you have to use white bread instead of wheat in order to feel good then that’s what you do. You can get your fruits and vegetables in high quality blended super smoothies but I would still take the fiber before hand. By puréeing and using blenders, the kind it actually will liquefy your greens and fruits You can easily in just the nutrients you need without dealing with the fiber pain.  Vita mix is a good one. Worth the $$$ to get the nutrition.  

You need to buffer the liquids, acids, tiny particles of foods that sift down into the pouch by taking the Konsyl to help bind any of those acids or particles which Make it less painful to eliminate.  

I hope this helps all of you. I can totally relate to your experiences. Each and everyone mine and hope to help. 

Oh my. One should read their things before pushing Send. Sorry all. I was using the microphone but I think you get what I’m trying to say. 

Thank you for your kind response.  I took your advice to heart.  I went onto Amazon & purchased Konsyl in both pill & powder packets.  I couldn’t afford a Vitamix so I purchased a less expensive blender, I also purchased a smoothie recipe book.  If all this proves effective, I’ll invest in a Vitamix.  
Although I’ve received many kind & understanding responses, your’s is the first with concrete advice.  
Ive got a sigmoidoscopy scheduled for 8-18.  Maybe the results of that procedure combined with your advice, will put me on the path to a resolution of my issues.

Thank You Again

Hi Chosen.  I have had a j pouch since 1996.  Since then I have had many good and bad days, and up till about a month ago I wouldnt go to bed without a pad in case of an overnight accident.   I have been dealing with painful bloating and gas, disturbed sleep sometimes waking up 2 to 3 times a night, butt burn, anal fissures, frequent bouts of urgency.  I had a call with my doctor about a month ago, and I realized on that call that when I take immodium, the time of day taken matters.  I take just 1 imodium just before dinner each night.  I may take 2 or 3 trips to the liu before bed, but I've been able to sleep through the night and not wearing pads because the accidents stopped.  I think if you try using the fiber drink during the day and a nightly dose of immodium just at dinner time, see if that can work for you.  Best of luck.

Thanks!  I take Imodium on a rarely regular basis.  My problem right now is that the flow is unpredictable.  At any time my pouch just empties flooding the whole genital area.  I still have to wear Always Discreet Incontenance Underwear. There are days when I have to change underwear more than 10 times!  I have a Sigmoidoscopy scheduled for 8-18.  Maybe the GE can figure out what’s wrong

At this point, I don’t eat after 6 PM & that’s no guarantee of a clean night.  Hopefully, the examination will reveal the problem & lead to a possible solution.

Thanks for your support.

I’m really rooting for you. The packets are wonderful of the Konsyl , I use original formula. The pills are great to have on hand when you’re at a restaurant. In the end though, I take it 3 to 4 times a day so I get the round cylinder I believe it’s 12 ounces for Home And can just dip my teaspoon in, according to how much I think I need for that particular meal. I’m also now experimenting with a half teaspoon before meal and a half teaspoon after meal. It’s all trial and error. Some meals you may have pasta or rice or foods that are slower to process and absorb liquids so maybe that meal you might not take as much. If you’re eating a meal with a lot of fats and oils which are bad anyway or drank a soft drink with citric acid and you know your in trouble You might want to take more to buffer resulting burn. If you have a Whole Foods store, or are an Amazon Prime member You could try the 365 Psyllium Fiber Whole husk flakes. I use it when I don’t want to spend quite as much with good success as well. Konsyl original formula my favorite though. Then today, I bought the 365 brand of psyllium husk fiber tablets to have on hand if I’m out and about and perhaps forgot to take any before leaving home or similar situation. I keep a to go cup in my car and can easily usually find a Place to grab a cup of water to take them. let me know how it goes. I was a member years ago and out of the blue decided well maybe I could help somebody, so I got back on here. Thanks for your compliment. Have a great evening.

You may or may not experience burning or skin irritation if you’re having diarrhea. Keep skin clean, Dan don’t wipe and use Calmoseptine cream ointment. It’s a lifesaver. The only one on market that had BOTH calming ingredients as well as moisture barrier. I swear by it. 

I had the total colectomy and take down surgery in 2002. I was told to do pelvic floor exercises prior to my surgeries, so I think I had a pretty strong pelvic floor once I had the take down. The three months that I had the ileostomy was pretty bad, with a lot of sensitive skin around the ileostomy. I was actually relieved to have the take down surgery. One thing I would say was that the first time real food passed through the pouch was pretty painful, but after that it wasn't so bad. initially, i had the urge to go to the bathroom, but it got better as time went on. At this point, 18 years later, I rarely think about the pouch. I have adapted my life to the pouch, with  a lot of trial and error with diet, etc.