How recently was the K-pouch constructed? Can you explain why you don't think pouchitis is a possibility?

The absence of fever combined with the fact that a LOT of my pain is not where the pouch is it is diffuse and almost crippling. The gas and bloating are super intense. Those would be my main reason for not suspecting pouchititis.

My procedure was May 2nd along with 3 very large hernia repairs. One was peristomal and the size of a football and one was umbilical the other was from an old J tube i had 2 years ago.Thanks for the inquiry.

The absence of fever in no way precludes, or even argues against pouchitis. Gas and bloating, though, are more characteristic of SIBO than pouchitis. OTOH, your pouch is only about a month old, so it's a bit early to draw any sweeping conclusions. Things may settle down by themselves. With your surgeon's approval you might explore some basic things: Metamucil, Imodium, probiotics. Any of gene can increase gas for some people, so move slowly and change only one thing at a time. Good luck!

Angilanr,

You are just in pouch infancy so please do not panic...it is way too soon.

Let's start with the terrible smell. What are you eating? The smell can be directly related to your intake, some foods that you may be allergic to, or SIBO (from taking antibiotics pre-op?) as Scott said or even pouchitis.

Whenever I have had pouchitis I have not had a fever. Cramping, gas, bloating and burping yes, but no fever.

The side effect of the pouchitis can be very sore abdominal muscles but I would ask myself if it isn't just post-surgical muscle pain? You had a lot done in there, it is normal for it all to hurt. If I read correctly your pouch is only just a month old....do you still have the indwelling tube attached to you? 

If I read correctly your pouch is only just a month old....do you still have the indwelling tube attached to you? If so, that is the smell that you have, the excess production of mucus around the tube that soaks the gauze... once the tube comes out and you start intubating regularly on your own, the stinky mucus stops being produced. It may just take a few days for it to slow down. 

The more you intubate, the more the tube rubs the inside of the valve and the more mucus produced...and yes, it is stinky. It takes time for it all of calm down but it does.

When you say that it is soaking the gauze, what is? Stool of mucus? You aren't having any stool leakage, are you?

Things will change a lot over the first few months, more than you can imagine. It takes time but you need to be very patient...this is nothing but the beginning and it is a learning curve...As Scott said, there are things that you can do to help yourself a bit...taking probiotics or a probiotic yogurt does a lot of good, avoid most other milk products especially milk.

You can make yourself some vegetable soups with a bit of chicken or meat in them...Cooked vegetables like zucchini are very pouch friendly.

Hope that some of this helps.

Sharon

Thank you Sharon. Pouch infancy...i love that. The soaking is a LOT like some on poured water on your pants . I haven't worn my indwelling Cath for a while with the exception of a few days ago due to the terrible discomfort and there was some minor narrowing so I was told to put it back in for a few days.

As far as diet...i have SO many food allergies (milk. Egg. Soy. Garlic. Onion) I also have some issues that require a low residue diet let's complicate this by I'm vegan...Lol. I did force my self to drink some chicken (bone) broth about a week ago. I also have probs with rice making things to thick so I limit that and potatoes are a mono for sure.Imainly am Fed via TPN but also eat ice pops (all natural) and gluten free pretzels. Some time sorbet.Hope that wasn't TMI. I also use some antispasmotic meds and other things for my GP.

IF there is no fever how do you know there is pouchititis? Also does it hurt and cramp when you slide past the valve when you Cath?

II hope I'm just being impatient... It's been a very long journey and I am growing very very weary. I feel like I'm never gonna recover from this. How long was your recovery? Did it hurt where your pouch is when you had pouchititis? And yes my entire small bowel and stomach are sore cramping and sometimes doubled over in pain.

Also thank you so very much for your reply. There isn't enough support out there and I feel so alone and afraid.

Ang.

Angilanr, four years ago I had my BCIR surgery and had some concerns similar to yours.  In my case, I did not have an indwelling catheter and emptied my pouch with a catheter in the usual way.  The length of times between scheduled intubations was increased from 2 hours until I reached 8 hours.  I was very concerned that stool and gas was escaping between intubations and that I had skin irritation around the stoma.  My surgeon suspected pouchitis and put me on a course of antibiotics for a couple of months.  I had experienced no pain or fever during this time and it was believed that my valve just needed time to “mature”.  These problems completely disappeared by 3 months after surgery and I have had absolutely no pouchitis or leakage since.  Give your pouch some time to grow up and you should be fine.

Bill

Ok Ang, 

I am getting a better picture...

1. Your valve brand new. It is just healing. Things take more like 6 months rather than 6 weeks to heal. So, all pain is normal unless it is severe, sharp tearing pain or accompanied by bleeding...Then it isn't normal. It will hurt pushing through the valve...it is handmade and delicate. Push delicately and use a lot of lube.

2. I respect all religions and diets (sometimes they are the same thing) so I won't tell you to go out and buy a steak but I will tell you to make sure that you are getting enough protein. Lentils, nuts, soya...All sorts of vegan proteins are out there and easy to make and eat...you need protein to heal and build back your muscles.

If you can tolerate bone broth then make lots, freeze as ice cubes and then throw a couple in a pot with your favorite vegetable and simmer. Add some whole grain pasta and you have a meal.

I used to eat a lot of rissoto...easy to make, you can use vegetable broth and olive oil instead of dairy. It is just slow cooked rice with whatever veggies you like. I added cashews or peanuts to give it protein and crunch.

If rice makes you too thick then drink some prune or grape juice...sip small quantities over ice...tastes better that way.

3. I am the queen of smoothies. I have an immersion blender. I just throw whatever fruits are overripe in my fruit drawer and add ice and a banana and I have brunch.

4. Gauze is not very absorbent. Try paper towels. Fold up a piece or 2 inside your undies. No tape needed. I add an extra layer of mini pad stuck to the inside of the undies. That protects my clothing and my sheets. 

5. Things will change...it will get better. Be patient. 

"We are here...we are here...We are here"(direct quote from Horton hears a Who)

Sharon

Thank you so very much. All amazing ideas the I will try. So your pouch works well with lentils? I may try that. I have malabsorbtion so alone seeds and nuts are mostly out and meat is diff to digest hence the vegan. Don't get me wrong it was a medical thing not a life plan. Haha.

I am having some bleeding with cathing and my aroma picks out a smidge when I get bloated. Just at the edge.

One more question...how did you find out you had pouchititis?

This thing is alot like a newborn I suppose.

I think my fear is my small bowel feels like it did when I had a colon and the stigma is still there. The pain is like it used to be and not necessarilynear the pouch with the exception of pain when I Cath.

TThanks again so much. I'm excited to be where you are.

Your pouch and valve were created by them cutting 30cm of your intestine...that hurts. Things were moved around a lot in there...that will take time to heal...give it time.

I didn't figure out that I had pouchitis, I didn't know what it was. I called my surgeon and he figured it out...But that was 38 yrs ago...I have had a bit of experience since then...

In my case, it felt like stomach flu, gastro or food poisoning...miserable, crampy, cranky, gassy...

Overcook your foods for now, drink tons of fluids, add juices...avoid drinking juice or carbonated liquids with your meals...before or after.

Your valve will bleed occasionally...don't panic.

Use nut butters instead of nuts, chestnut paste is great, whole grain bread is wonderful with fresh butter which you can probably eat even if you are allergic to dairy...butter is more fat than milk.

I make dried fruit & nut pastes too.  You use a food processor and throw dates, apricots, raisins, prunes or any other dried fruit into the bowl and add a handful of nuts and sesame seeds or sesame seed paste.

Roll into a log on waxed paper and then roll into sesame seeds and refridgerate.

Yummy.

Wow...you are a pro. Thanks again for.all your great advice.

Ang.