Hi Folks
I was here a year ago with the same issues. I am in a bind as my HMO is not going to approve me to go see Dr. Worsey for a scope. Anyways I am still hoping it is not a closed up anastamosis causing this pain. I take Cipro it helps then when stopping it starts again. Does anyone have this problem?

Hi Janice, I know I only come on here when I have a problem but I am always thankful for the help I get on this site. Dr Worsey will not call me back or email me like Dr Launer used to do. I'm worried whether he is going to help me.
My medicare kicks in June 1 and then I can have another baloon dilation by Dr Goldklang who was wonderful in responding quickly. Hope I can wait that long. Why is this happening to me and no one else. Scar tissue?? Diet?
Jeanne

Have you tried any form of anti-inflamatories? If so, do they work? It could be a twist, scar tissue, kink etc...tons of possiblities...does it happen if you stick to a liquid diet? Is it only on certain foods? Are you keeping a food journal? Can you track it? Have you gained or lost weight? Any special movements, exercises or twists and turning?
Obviously without tests it is hard to guess but you may want to stick to some light meals, lots of fluids and track it...you can do that yourself...with beet juice...or liquorish...just eat whatever food you are worried about...and add the beetjuice...you will see when it comes through by the coulor and then note down how it worked and if you had problems..
Keep us posted
Sharon

Thanks for the reply Sharon. It does seem to be certain foods causing it. I think they are getting caught coming down into the pouch. Which is what happened last year when Dr Launer went in and found I only had a 3cm or mm (have to look that up)opening. I am sticking to full liquids and ate a salad last night NO PROBLEM. This all started when I started weight watchers in February. Went gung ho with a lot of fruits and vege's and bang unbelievable gas. Tried to eat brown rice (no way can tolerate it) anyways I am going to stick to Slimfast today and just keep trying to make it until June.

I have been needing to wear my tube every day because I have caused so much bleeding in my valve. I think my surgeon Dr Worsey (assisted in creation of the kock with Launer) is probably going to recommend a permanent illeostomy when I get down there in June. No way will I accept that until all avenues have been tried. A balloon dilation just seems so temporary.


I will look thru some old posts to get some ideas. I am astonished that no one else has had this problem with their hole closing up.
Jeanne

Hi Jeannie....Dr W is very skilled. Once he establishes a relationship with you in June he will reply via email. I have had no issues with him not replying promptly. I'm sure he'd do whatever it takes to save your kp.

I would absolutely follow Sharons instructions. A food journal is very helpful for Dr W in June.

I get the weight prob. I need to loose at least 35lbs. If you are not able to chew and have the food pass through...you can always get a juicer and drink it. Just stick the same amount you were going to eat into the juicer and drink up. Add protein powder and you'll fill full. I am so lazy to juice..so hahahaha just saying that is an option.

Giving your valve a break of interbating is good..but I get MORE sore leaving the cath in. Lots of lube..

I get lots of cramps too, and I have a narrowing at my anastomosis as well. I think some of it is also due to waves of pressure in my bowel. I had the same feeling in my old j-pouch. Not sure what causes that, but it hurts!

Tiffy you explained it exactly. These waves grab my tube and make it very hard to get in and out. Have you ever heard of Greek plain yogurt, strawberries and one banana (whipped in the quisinart) giving a person horrible gas. It did me last night. I know I don't have enzyme deficiency for milk products.

Lately I cannot take my 3 mile daily walk without having to tube during the walk if I eat anything before the walk. That is just my normal.

I'll just keep looking at what I'm eating causing the worst pain. Last year when the hole went down to CM's the pain was excrutiating and then there would be a whoosh sound and relief of the food falling thru. I'm not hearing that sound. The baloon dilation by the GI doc opened it right up and complete relief. However they chaged $5,000.00 to use the endoscopy suite at Scripps in at 7am and out at 11am. They the two MD bills to boot.
I hate to say it but thanks for sharing your problem. Take care

Hi Janice
Glad you are still helping everyone. Without you here I would have much more anxiety. Ok I will get established with Dr. W. and then on to Dr Goldklang. Goldklang has an office in the same building and I thought I had to go to Encinitas to see him. Maybe this is pouchitis. If I knew what the heck that was.

I have a juicer and I whip everything in the Cuisinart. Tonight I am going to try steak. Proteins seems to get through easily. I have lost almost 10 pounds at WW but it is really slow because I keep eating chocolate. Which comes thru easily.
Talk to you soon. Hope you are doing well. I really have to read these before posting them.

Sounds like my diet..protien and chocolate...the stuff that goes through the easiest...along with ice cream...
Sharon

Many times I get the extreme waving cramping after a meal...but I just let it be and then it disapates and I then I go empty. I never thought about it as I haven't known any other KPers till this forum and thought it was just my digestion.

I do know that it is worse with too much fiber or foods that I didn't chew well. And sometimes if I drink too much liquid with a meal.

What I found works is to just wait as the pain goes away. It seems counter intuitive but works to wait for me. If I try to interbate during the cramping the poo is not there to flow. Once it passed into pouch..it's all good.

It does hurt like hell...but I don't get it with each meal.

Hi all
I wanted to update what happened to me regarding my assumption that I had another anastamosis closing up from scar tissue. After 2 10 days trials with Cipro I went back to my normal "I can eat anything" Except, olives and mushrooms. Sooooo after freaking out that I would have to have a permanent ileo due to a poorly functioning K pouch I was happy to have all problems resolve on it's own. WOO HOO
I am even eating corn on the cob.
Jeanne from WET WET WET Placerville, CA

Just wanted to chime and say how happy I am that you are feeling well again. I missed this thread the first time around; I am a new visitor to the K-pouch forum, since I may be looking at pouch failure and would like to be considered for the K-pouch. One of the things I have been worrying about is foods, and how it must be hard to eat many foods that would get lodged in the catheter. So I was thrilled to see you say you eat almost anything! So glad things worked themselves out for you. Enjoy!

Congratulatins Jeannie,
So what was the cause of all of this? What happened?
I know that whenever I go on a diet I have problems...too much fiber and my bowels get ultra irritated...my usual protien, a little bit of green veggie and a tiny amount of fruit or juice but never mixed with the food...as for yoghurt mixed with strawberries and bananas? a Small grarentee that my body and pouch will hate me for 48hrs....never ever mix the fruits with milk products...it is a maajor gas producer! As for the wave of cramps...that is what causes it, the mix of carbs with fruits or milk products with fruit (I am a great believer in Fit for life...my dietary bible book)
Sharon

No kiddin For me eating cereal with fruit major gas and painful gas. Holy Cow You want to be home when it happens so you can leave cath in for awhile. I am eating so much watermellon every day and just putting up with the gas. I guess that is my choice.
How is the weather at this time of year in France?

Watermellon.? I can now only eat very small quantities of it but prefer to gorge myself on it and then spit it out...hurts less that way (I have also made iced watermellon juice for myself and the g-kids...lovely but lacks the crunch that I love
The weather here? Lousy...worst in 30yrs...rained most of the summer and when it wasn't rainning it we had either tropical heat or crazy wind storms...hoping for a nice fall...because winter here is miserable!
Made an interesting discovery today..having really bad pain around the pouch/stoma area...finally figured it out...I am learning to drive a stick shift and it is the gas/break of a non automatic car that is killing me...strange how the weirdest things hurt us and our pouches!
Sharon