Hi jpouch mom,

so sorry to hear all this-it must be so hard to watch and live this as a parent  

It’s hard to tell from your post exactly what you need advice with-is it mainly the excessive output and pain? It makes sense she would lose her appetite -it’s hard to want to eat when you are sick and in pain. 
My doctor gave me suppositories for rectal cuff inflammation that worked well for the inflammation-I think it was salofalk. If she’s always doing better on the antibiotics, do they think Pouchitis is at play? If her stools are improving on it it seems there would be a connection. Probiotics might help to restore some of the gut balance messed up from all the antibiotics for c diff. 

i imagine others have suggested this but Metamucil really can be a god send to thicken things up. I also try a low residue diet if there is a lot of gut pain since it means things need to “move less” since there is less waste at the end. Lots of “bulky” foods like rice, pasta and bananas. It really sounds like your physician should be helping though-what are their thoughts? Gatorade for dehydration/electrolytes  might help too.

good luck to you both-it does get better! I  was close to your daughters age when I had my surgeries and missed 2 years of university for all kinds of similar pouch-related health challenges-spent nearly 6 months in total in hospital.  Now it just seems like a blip and I got my life back for a good 20 years before having issues again. I lived with my parents for it all and know they felt very helpless. Hang in there....!

Thank you Duck11. I'm taking my daughter to a clinic and asking for SIBO antibiotics - although not cdiff.... I think it's bad bacteria. Once we get it gone, then we start heavy on Visbiome to get good stuff in. I will keep you posted. All other issues have been looked at and cleared... several times. 

I am sorry to hear your story and I hope your daughter feels better soon.  With all the trauma to her gut, it sounds like she may have some hypersensitivity and may need an antispasmatic to slow down the gut and the diarrhea- I have used with great success Tincture of Opium.  I take a few drops and my output slows down a ton.  It sounds scary since it has trace amounts of Opium, but it is at such a tiny amount, you simply calm down the gut with getting a “high” feeling at all.  For me it works a lot better than Imodium.

Ugh!!! Back from hospital visit. Of course our Canadian emergency room doctors wouldn't give us anything because our situation is beyond their knowledge and confidence. So afraid to give antibiotics and they don't have tests for SIBO. They even admitted they don't know enough about probiotics. *sigh* So frustrating! 

And thank you Doug. We have tried 2 antispasmodics with no success. I'm hesitant to try your suggestion,at this current time, because we tried cannabis and it too didn't work. But definitely I will keep it in mind as we forage ahead, if we continue to not find a resolve. 

That makes sense.  I wish her good health soon.  Best of luck - it must be so tough, but stay strong - it will get better. 

Hi, JPouchMom.

I feel very sorry for your daughter. What does the surgeon who created her J pouch say?  Is he/she following and directing your daughter's recovery?

Winterberry, we have been following everything all the doctors say. Surgeon was absolutely amazing- although terribly complicated because rectal cuff so badly damaged (left over from 2.5 years earlier  - we all knew, but no one thought to treat it while having ostomy). Anyway he worked his magic,  it all healed and then transferred us to GI. We have a special place in his heart,  so he still continued to meet us and check-in.  Both GI and Surgeon put my day on Remicade to help cuff to heal. They just suggested FIBRE FIBRE FIBRE (Benefibre which we never saw results - so now she is eating Metamucil Fibre Thin Cookies  - just starting out with 1pkg a day), LOMOTIL and IMODIUM (as much as she needs).

So we went from gradually increasing toileting sits from about 12 to 30!! We went to hospital and that very next day, we dropped back down to half (~18), and she felt BETTER.  And the next day,  again only about 12 toileting trips. But TODAY!? WITHIN 2 hours she had 5. 

GI doc is wondering about lactose intolerance - dairy is a staple for my "vegetarian" daughter.  We will MONITOR. He also agreed to test for SIBO (yay!) - they will call us with testing dates, hopefully soon.  We are permitted to contihue using the Visbiome probiotics, but he wondered if IT was causing her diarrhea? I wondered if it actually helped - after reading many posts in this forum,  we increases from 1 pkg a day to 3 for two days and them we had that really good day. I thought a couple days of Visbiome may have been responsible, but he thinks it might have made the two days we took it,  worse??? So ingaveher one pkg last night and then this morning happened - lots of toileting. So I have mixed feelings.... ANY THOUGHTS ON VISBIOME connection?

Is it a possibility your daughter is allergic to probiotics? Or allergic to that one in particular?  If her reaction was severe a day later, that might be the allergy taking time to set off her insides?  

Has she met with the hospital's dietician, who might be more familiar with j pouches since they deal with newly formed j pouches all the time?  When I woke up from surgery, one of the first staff to visit me was the hospital dietician to ask about my normal diet (I was lactose intolerant, and diebetic) and see about my hospital meals formthose first days. Ask if you can meet with the hospital's staff. If they hesitate, or say younare no longer an in-patient, ask your surgeon's office to cut through and make the request. Move mountains, as politely as possible. 

Has anyone suggested food to help soothe and help your daughter's insides? It could be she can't tolerate Metamucil or Benefiber or anything else. She might be intolerant to pysillium, or theningredient(s) in Imodium.

Just a thought: have you tried using plain ground psyllium husks instead of Metamucil powdered or wafers? I didn't tolerate the Metamucil wafers very well, but have had better success using the plain, ground ordinary psyllium husks.  I add 1 tablespoon of the psyllium, plus 1 tablespoon each of flax seed and chia to my smoothies.  (I also use kiefer as the base, since I'm lactose intolerant and it has a lot of probiotics.) I have seen a good thickening in my output since I started this process a few weeks ago. (I also take three Beano tablets with my smoothie to prevent blowing up like a balloon. It really helps me.)

 I wish I could wave a magic wand and make your struggles go away! The fight gets old really, really quickly. My thoughts and prayers are with you.

Interesting she is a vegetarian...I was too and honestly had to give it up after I had surgery. All the protein sources were just too much (beans, lentils, lots of rough fibre in vegetables) and  made my pouch empty 20X/day and lots of watery diakrrea. I couldn't get the nutrients and protein  needed just from the diet and I was pretty diligent.  I felt a lot better when I added lean meat, cut out the high-insoluable fibre sources and went lactose free. Have you tried an elimination diet, adding foods back very gradually? I had no lactose issues my entire life until I had surgery, then was suddenly lactose intolerant after. 

Also, yes ER's for J pouch patients are awful-I'm in Canada too. They have no idea what to do with us fo the most part if the problem is  related to the pouch.  

Thank you everyone.  I appreciate your kind words and support! xo

Great ideas and suggestions. we are going to try the "lactose-limited" diet.  It's interesting to hear the problems people have encountered with lactose since getting a pouch. Although the Visbiome states it has very little dairy - basically just made with the 'culture', we have stopped it to see if it makes a difference.  Since she only recently started eating the cookies, and hasn't had very many, we will continue with them.   As of today and yesterday, the past two nights she has only been up to toilet twice, each night!! YAY! I'm letting her sleep in to catch up on much needed rest. 

Winterberry - We have had Dietician support for a long time, and it wasn't very helpful.  We expressed we cannot eat smoothies, and it appears to be their go to.  We have stuck with our whole foods lifestyle, although because she wasn't eating for so long, we were allowing her to eat whatever she could - including all the sugar-laden-crap they give you in hospitals (ice cream, pudding, jello) - and it appears her tastes buds have changed a bit.  Although you can't gain weight on vegetables, we are trying to provide her with a lot of high-calorie carbs (breads/pastas). She is thankfully not celiac or gluten sensitive.

Still Standing - Trying to take any kind of "textured" drink is difficult for my daughter - I might as well fight her in a wrestling ring (  I might look into ways where I can incorporate psyllium into home-baking though to see if that makes a difference.  For now, her resistance against the cookies has subsided, so we will continue with them to see if the make a difference.

Duck 11 - She was lucky - when she had an ileostomy bag she could continue to eat everything she always did.  Many people in her ostomy support group had to change their diet. When she was needing a feeding tube for 5 months, the best feeding tube formula had meat in it, and she knew she had to have it.  She is vegetarian by choice and has been for almost 5 years. 

A QUESTION FOR EVERYONE - when you get/begin to get "sick" (cold/bug/flu/gastro issue etc), do you feel it in your pouch or through increased bowel movements? I wonder if she is just constantly fighting off something, since she is on an immune suppressing drug??

I REALLY APPRECIATE all your help! xo THANK you!

I appreciate how important the philosophy of various diets can be. I nevertheless think it’s an error to have such strong opinions about it that serious medical issues are treated as less important. You can live that way, but it seems like unnecessary suffering to me. Some J-pouchers do fine on a vegetarian diet, but plenty can’t tolerate it (and vegetarian diets can vary enormously). Your post title says “what are we missing?” Dietary flexibility may turn out to be an important answer to that question. Your daughter has plenty of autonomy in this, and has both the right and the power to make her own choices. You can help ensure that her choices are well informed, and that she understands what price she may be paying for some of these choices. You ideas about “whole foods” surely apply better to people with colons than to people without colons. While the nutritional content is likely better, there are lots of ways to damage your overall health, even while eating otherwise healthful foods.

Nah when you get sick ((for me anyway) you are just like everyone else. A cold/flu stay in your lungs/sinuses, etc. and the  pouch continues to works fine. The only exception is a GI bug as we tend to get dehydrated and have electrolyte issues more than people with colons. Sometimes when those are out of whack you can feel pretty miserable.  I would be remiss to point her problems on constantly fighting something-it seems an awfully long time to just be bouncing between viruses. I take methotrexate for my joints which is also an immune suppressant and it has zero effect on my j pouch or even how often/severely I get sick. I know that isn’t the same drug your daughter is on though, so I don’t want to mis-speak. 
I agree with Scott that really looking hard at your diet might help. I love whole foods, but alas they are pretty hard on my pouch! I often joke with my doctor that I’m the perfect patient who can never be because if I had a choice I’d eat a pile of fresh fruits and veggies, beans and legumes, micro greens, grainy breads,  all the good stuff they beg most patients to eat more of, but despite the preference, I can’t eat them!