Everything had been going very well for my daughter since her takedown. Averaging 8 bm's per day, and sleeping through the night with total continence. She followed a "safe" diet for the first 10 days or so, and then began introducing soluable-type fruits and vegies; she was even fine with corn. (Her surgeon, GI docs and dietician at Children's Hospital told her she could eat just about anything, sans nuts and seeds- for me that went against logical thinking and so I insisted that she play it safe) She has begun resuming her typical summer activities, and I guess that's why she thought nothing of consuming a Taco Bell Chalupa AND a Crunch Wrap Supreme... all in one sitting. I might add that she is 5' 7" and weighs 105 lbs. She probably had the gully-washer sized Coke as well. Ever since, she has been feeling some soreness in the pouch, a little crampy, and is experiencing increased frequency without feeling like has emptied completely. She got up a couple of times last night, but I don't think she was sleeping anyway... just worrying. This kid has been through the ringer- I'm sure you all can relate. I just can't believe that the TB caused this. She has no fever, and was taking two immodium daily to thicken things up, but ceased taking it yesterday when she started producing formed stool that wouldn't evacuate completely. Today, the stool is small stone-sized with green bile (sorry guys). She is afraid to eat much because she then feels like she has to go, and little stool comes out. She is well hydrated. She's also had a trace of blood, likely from straining. I might add that she just finished a course of Cefla antibiotics for a sinus infection last Sunday, and our surgeon suggested we wait to start probiotics until after. She had taken small doses of VSL#3 DS at the beginning of the antibiotics, and said they made for a grouchy pouch. She re-introduced two regular probiotic capsules yesterday in hope of some relief, but hasn't found it. Sorry for this lengthy post, just wanted to give you all the big picture so you can weigh in. I am confident in our doctors, but I don't like their try-it-and-see philosophy. Is this a stricture, a partial blockage, or pouchitis? If I can call them tomorrow with your insight, I will feel better. I so appreciate this forum, I might even be a bit obsessed with it. And to think of all the crap I have given my husband about his time spent on the Blackberry forum.
Thanks so much,
Heather

This could be the residual hangover effect post antibiotic. I was treated with Cipro once and had pouchitis-like symptoms after the discontinuation of Cipro. My surgeon told me that other pouch patients complained of similar post-antibiotic symptoms. I doubled up on probiotics and within a couple of days I was fine.

I kind of agree with your doctor's approach. It sounds as if she is fairly fresh out of her reversal and there will be days of two steps forward, one back for about the first year. Just when you think things are predictable, they are not. It takes a long time to make the adaption. I really don't think the food caused this.

That being said; should she develop abdominal cramping or a fever it would make sense that this could be pouchitis. The green she sees is just bile and is normal. If she's not eating or eating very little you will see more of this. Don't be concerned. Seeing blood on occasion is normal too and can be expected from here on out.

Sue

It might be a partial blockage. If it is she should move around as much as possible. It's good that she stopped the imodium if it's a blockage. She can also try hot baths or heating pads. Drink hot liquids and don't eat bulking foods. Soups would be good.

Of course, all of this could just be a result of introducing new food and will work its way through. I think that what Sue said about it not being caused by food is that pouchitis isn't caused by food.

Now here's the confusing part - if it's a partial blockage, eating may not be advisable. If it's NOT a partial blockage, not eating might exacerbate the problem by creating more bile. Nice huh?

Please let us know how she's doing. (And it sounds like she's doing better than great except for this road bump.)

kathy

1st let me say that I'm a long-time j-poucher so I have certainly forgotten some things that I experienced early on. Anyway, I agree with Suebear that sometimes things get a little out of wack after you come off of antibiotics. (They do for me even now on the rare occasion that I'm stuck taking them.) Also agree with the wait-and-see approach. It doesn't sound serious at this point, just a discouraging setback to overcome. To me it also doesn't sound like pouchitis, which unfortunately I've had lots of experience with.

Not eating is really not a good solution. She needs her nutrients. If it were me I'd revert back to the conservative basic foods she started with that didn't give her any problems. Then slowly add back others. I will refrain from commenting on Taco Bell food except to say that I would NEVER eat there. Okay, no I'm not exactly a teenager or young adult anymore, so I understand her wanting to.

You didn't mention if she had tried or was using a metamucel-type product. I would probably use it. It's a bulk adding thing, not a "constipator". Because of what happens to her b.m. when she takes immodium, she should probably not take that or cut way back. It works more like a constipator that slows things down. I can't speak to the probiotic like others can in this group. I think I remember reading, though, that it takes a few days for your body to adapt and adjust to it. Maybe it would be best to do one thing at a time, e.g. Metamucil now, then immodium if needed, and probiotic later.

Good luck! She will have a setback once in awhile. Hopefully they are all just temporary. By responding logically and thoughtfully, she will get through this, and them.

Hello,

Yes i agree with the fibre idea. I have recently had some problems with incomplete emptying and straining due to this. I have found a great product in the chemist that has worked wonders for me. I live in Australia but you probably have a similar thing over there. Its a fibre supplement that you drink with a glass of water or juice, and it has psyillium husk, pre-biotics and pro-biotics in it. I take it the morning and at night 25min before food. It honestly makes having a BM so easy and i haven't had the feeling of incomplete emptying much since i started on it.

Tell her to avoid straining! i know it is hard but it will definatly add to the problem. I strained too much and have ended up with 2 fissures and a hemorrhoid.

I also always take VSL. I have 2 satchets in the monring with yoghurt. I think this is very important for some people, and especially important if you are going to eat something that might be a little dodgy.. eg taco bell, or curry etc..

What's the name if the product millyanne? I would like to give that a try.

There's an issue with these fiber products though, which I'm not sure is true- maybe someone knows- that the fiber coats the intestine making other foods absorb less into the intestine. That's what I've heard. I suppose even if that is true, a small amount would not be a problem, and fiber definitely helps some people, (like me).

Its Bowel biotics by a brand called Lifestream. Hope it helps you too!

I had never even considered that RML... I was curious so i looked it up, i found a little info here if anyone is interested.
http://www.bodyrecomposition.c...s-natures-broom.html
the section on nutrient absorption is a bit further down the page.
so fiber does impact the absorption of minerals and nutrients, but it is not necessarily a bad thing if you want to lose weight and limit your calorie absorption. But if this is not the case then perhaps a few mineral/vitamin supplements should be considered to balance everything out.

Thanks to all for your posts; I appreciate everyones' advice. Seeing your logical and thoughtful responses - when I was really starting to freak out - really helped to ease my anxiety, and to take a step back so I could see the bigger picture. I like being in control, but learned early on that IBD is not a disease that is easily controlled. Every parent can understand the helpless feeling of not being able to fix things for their child. I guess it was just wishful thinking (or naivity) that we would not encounter any more setbacks after takedown. I called our surgeon's office last Friday, and he wants to do a rectal exam/scope under sedation. Unfortunately, he can't do it until 8/11. They all agree that it could be an antibiotic hangover, like Sue mentioned. Meantime, we've been gradually increasing the VSL ds -up to one full sachet today, divided between am and pm. Ashley's also been careful with her diet; eating foods we know to be ok (laying off the T-Bell), and just enough to maintain her caloric needs. As of this very moment, things look like they're improving, but yesterday the pouch was quite grumpy and she was very tired. For the most part, she has been able to continue to do what she enjoys, hanging with her friends - even swimming She says her BMs are somewhat formed, and I made sure that she read your post, millyanne, about straining. We are now considering the addition of fiber (we had tried a couple of doses before this setback and it was fine). Prior to UC, we used, and still do, Benefiber. My family likes it because it doesn't feel like glue going down your esophagus. I haven't seen any posts about it here, though... just other brands of dietary fiber. I assume that all fiber is not created equal, so maybe you all could weigh in on that. I read the bit regarding the malabsorption of nutrients, and will consider it in the future. For now, I think we will start with a small dose of the Benefiber tomorrow, and see how it goes. One more thing, what's the difference between prebiotics and probiotics? Thanks again... you guys rock.

Heather

I'm no expert, but pre-biotics are basically foods for the good bacteria in pro-biotics to feed on. So they are meant to help increase the amount of pro-biotics and keep them healthy so other nasty bacteria can't over tip the balance.
Having said that i am vaguely aware of some debate about the use of pre-biotics. I think it is thought that they can feed the stronger strains of beneficial bacteria so much that you end up with a dominance and overgrowth of that one strain of bacteria rather than a nice balance of a wide variety.. And i think this can cause problems.( dont quote me on this.. someone else will surely know more!)

I have small doses of Inulin pre-biotic in my fiber supplement and i have not experienced any adverse effects.

Heather
I to have a daughter that experienced the EXACT same problems yours has. She is 15 and had her takedown 5 weeks ago but has only been able to eat food for 1 due to a couple of leaks in the pouch. I called the surgeon and he is doing a scope tomorrow morning to make sure it isn't a fistula. I am wondering what ended up happening with your daughter? How is she doing now? I would love to chat with you more if your interested. Our family has been through the ringer, especially my daughter. I feel for her and worry daily. Now that she has had her take down she is totally wanting to be "normal". It is scary for me just to know that there are still problems that could creep up. I would love to have another mom to connect with, my friends and family really don't understand as they have not experienced it. I'd love to connect and chat if your interested.
All the best to you and your amazing daughter!
Cami

Heather


I just wanted to add that sometimes when we add probiotics and we feel a bit icky afterward it can b too much at once and or that there is more "bad" bacteria than good and the good is winning the fight and the die off from the bad bacteria can make u feel icky almost flu like for a couple of days even. I am glad to see you r taking it slow and she seems to b tolerating well One last side note. My oldest daughter who as far as we know has no bowel disorder of any kind cannot drink soda. She gets severe abdominal cramping and gas. This also happens when she drinks concentrated fruit juices. So of course she avoids these (she is 19)

Praying the road is much smoother from here on out

As it turned out, Ashley's symptoms waxed and waned for a week or so until her scope on 8/11. Our surgeon dilated her during the procedure, although he saw no signs of a stricture or inflammation, He said he often sees scar tissue build up at the point of attachment, and hers was smooth. He also said that he felt like the blood was due to irritation, and the fact that her skin is very sensitive. The pathology was normal, thank God! Ashley seemed better almost immediately, so I think that her issues were likely due to pouch adaptation and plain old anxiety. Maybe it was the rebound effect of antibiotics. Knowing that "Jonas" is a fine-looking pouch helped a lot. Since then, she has had a few days of increased frequency, and is up several times at night, while others (most) are quite good. She has had some stomach pain (high up in her abdomen) that we haven't quite figured out; acid, lack of food (her appetite is not that great), or straining during BMs are all possibilities. We're working on that and are keeping a food/symptom journal. The variable here is the fact that she is 15, is busy having a life, and doesn't enjoy writing/discussing her bowel habits. Unfortunately, I can only help guide her, she has to take the initiative to eat properly and monitor her symptoms. I will say that she is trying hard to find the balance. Our surgeon suggested that she stay on the immodium and supplement with fiber as necessary. She's still taking the VSL#3ds, and is trying more foods, including fruits and vegetables, and it's going ok. We do know that triscuits and Jonas do not agree with each other.
Our surgeon said pretty much what Suebear commented here. We have to measure progress in weeks and months, not days. I should also mention that we now know she is suffering from adrenal insufficiency, due to long-term steroid use. This obviously is contributing to her lack of energy. All in all, I think I can speak for Ash when I say that even the bad days with a pouch are far better than the good days with IBD.
Cami- thanks for your comments and kind words ; I will attempt to p.m. you right now with my direct contact info. I would love to connect and share experiences, and I wish your daughter the best.
Shell007- thanks for your input; I wish I could convince her that soda is evil! I think she'll figure it out eventually. My older daughter is also 19, has no bowel disorder, but suffers from transient GI issues occasionally. Interesting...