What's going on?

What are the odds of going on a full blown elimination diet Mema?
I mean right down to bare bone (broth and no stimulants for 24hrs then slowly working bck with nothing but protien (fish, chicken etc)).
No carbs, no sugars as all...see if it calms things a bit and then very slowly bring yourself back keeping a food diary on whatever gives you gas, pain and cramps...Do not forget to note down your meds, liquids etc and when you eat and at what time...no other ideas...I am useless at knowing which meds to take...When things go crazy for me I take gravol...it slows everything down to a near halt, kills the nausea and stops the runs from running.
It is my go-to drug...
Don't know if this helps
By the way, how are you doing? How are the kids? Are they around enough? It is good that you are going to a support group...sharing a shoulder with someone else who needs a good cry too always helps.
Hugs
Sharon

Sharon, you're so sweet, and I have been thinking about you and all that you must be going through in Paris. What a nightmare for all of you. Do hope you are doing better.

As for me, I have been thinking of doing just that starting with just protein and going from there. I don't know what else to do. I know one thing, I had breakfast this morning and nothing else since then and I've had no pains and no gas. You can bet your boots though, that as soon as I put one thing in my mouth the pains will start as they usually do. However, going on a starvation diet is not such a great idea either. I'm going to have some cheese now to see what that does and go from there. Thanks so much for your suggestion and I will keep a diary of my foods as well.

My kids have been great and I have a lot of support from my friends as well. I have had a "date" every night for dinner between friends and family, but somehow it just isn't the same and I miss my husband and my old life terribly, which could very well be a part of my problem. I think the loss of my job which kept me so very busy and my new life is just so different and I'm not adjusting well. Of course, it's only been five weeks, and I know that it takes time.

Thanks again for your support and caring.
Hugs back,
Judy

When gas got out of control for me a couple of *months* of doxycycline took care of it.

Every treatment (including an elimination diet) has negatives. I'm on antibiotics all the time, but I have no gripes about my life - really!

Judy,

I've been meaning to write you for a while. For the past 18 months I have been having very similar problems as you and I wanted to let you know a bit about my experience. My pouch is almost 19 years old and most of those years have been great.

I began having cramps just as you are describing. I felt generally unwell, with pain and urgency etc. I had a scope and my surgeon said I had cuffitis, not pouchitis. I was on the mesalamine suppositories (called Salofalk in canada). It helped but I still had the cramps. They occurred later in the day. Never in the morning. The only thing I could think of was that I was completely empty in the morning, and that was the only reason I wasn't cramping up early in the day. The cramps began later in the day and were pretty bad in the evening and woke me up a few times at night.

I went back to my surgeon and had another scope because my cuffitis seemed under control (kind of) but the cramps/spasms continued. I asked for a anti-spasmodic (on the advise of somebody on this website) but she wasn't keen on it. She instead suggested I try Proctofoam first. It really did help me. I used it for about 2 weeks and the cramps completely disappeared. I weaned myself off of it during the next few weeks.

I absolutely believe that we can have cuffitis and pouchitis at the same time, and might need cipro when the anti-inflammatories don't work.

About 8 years ago I had a few bouts of pouchitis and decided to take the lowest dose of cipro that would keep me symptom free. I took one tablet every second day for almost 6 years.

All this to say that if you put 10 j-pouchers in a room, there will be 10 different tips and tricks to stay healthy and feeling the best that we can.

I do hope you find your particular solution. Give the proctofoam a try. And don't be scared to be on anti-biotics if they make you feel much better.

Keep us posted on how you are feeling.
C-jay

CJB.. it was determined that I was allergic to mesalamine. My only symptom was cramping and it made my UC symptoms worse. Just curious if that might have been the reason proctofoam helped more than the suppositories.

CJB, thanks for your response. I know that I do have cuffitis, only because my doctor told me that's what I had. I've used the suppositories many times and they have never seemed to do anything but make a mess out of my toilet seat. I will, however, find out about the foam and see if that doesn't do the trick, so I do appreciate your advice.

Yesterday, I ate very little except for breakfast and did not have one problem at all. I did what Sharon had recommended, had some cheese in the late afternoon with a bit of peanut butter so that I could go out last night and was fine. For the first time in many nights, I slept through the night and didn't wake up until the morning, what a pleasure. Of course, I cannot starve myself every day, I'm thin enough as it is. So thank you all for your advice and I'll keep you posted as to what's happening.

I wish I could get off of the Librax. I hate being on it, but it used to do the trick whenever I got these pains. Perhaps if I can get rid of the cuffitis I'll find that I don't need it any more.

I'll also check on the antibiotics, and Scott, thank you for your advice on the docycyline. I'll see what the doctor says when he gets back to me.

The decision to use doxycycline was based on a diagnosis of SIBO. The diagnosis of SIBO was (mostly) based on the incredible amount of gas. Doxycycline gave me a nasty bellyache for the first week or so, but that cleared up.

Good luck!

That's interesting...I was wondering what one would do if they had SIBO, now I know. Thanks ever so much again. Only problem now is I'm wondering if that's what it is or what cuffitis as CJB mentioned. There's never an easy solution for this Jpouch is there? Well, I suppose it could be worse.

Hello,

Your symptoms sound so much like when I get pouchitis. Unfortunately for me, I cannot find any rhyme or reason as to what causes a flare. I have kept a food diary and there is no real pattern. The only thing that will help my pouchitis is either flagyl or cipro.
I have found that if I eat Greek yogurt at least one time daily, the bouts of pouchitis are farther between.

Becky