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Last time I treated it for 7-8 months before "remission". Part of the time was with Anucort suppositories, the rest with Canasa. The Canasa finally worked and I was on a maintenance schedule of a couple times a week before this blew up again. Acute and Chronic cuffitis (UC) and IPS was the Mayo diagnosis, thus the maintenance dose. It's UC all over again, along with c-diff and IPS.

I'm calling Dr. Loftus's nurses today. I don't think there is anything else to do. Confused

Thanks for asking.
I will give you all a little chuckle for now! My daughter is in her Jr. year at college but had to go to a specialist yesterday for her lower legs compartment syndrome. I picked her up and took her (thank God). It was a very aggressive test for her 4 Novocaine injections in each leg and then another big needle in each of the 4 sites to check for pressure of the muscle and fascia. Then she had to go and run/jump etc. to make herself in lots of pain to go back and measure the pressure to see if it was Compartment syndrome. I found her a private area to jump up and down and it was near a ladies room. That is where I had to go! I left her for five minutes. Well, next thing I am on the throne doing my thing which is painful enough for me and I hear her yelling "MOM"....well she rolled her ankle and now it is a very bad sprain. Funny part....I come out of the ladies stall running with my pants half up (two men near her) zipping my fly and doing my belt. Chaos around us and she ends up letting out wind herself and she turned her tears to laughter for a short time. We both started to laugh!

Now reality has set in for her and she is disgusted but still hoping for the best. I told her this can be fixed! Of course, I didn't sleep much last night worrying about her!

This too shall pass! How about one of us out there winning the lottery?

Heidi, I still have to be very careful of foods that can make me gassy. I don't eat broccoli or cabbage that is for sure. I had horrible gas pains it seems every afternoon when I was working (worked in a small office & left my job right before x-mas) and now that I am home and can release the gas when I need to I have really been gas pain free. I can tell when things are starting to rumble around and know it is time to be near a bathroom and not hold it in.
I guess it all depends on the person. I pretty much stay away from the foods I couldn't eat before all my surgeries and during my surgeries. I still am quite afraid of the outcome it might cause.

I get so bloated and the noises that my stomach makes are incredible LOL. I'm constantly having to say, that was my stomach, not the other!

I don't know about you, but the only way I can release the gas is if I'm laying on my side or occasionally on the toilet..?? Not sure why??

It also can be very painful at times when the gas makes it way into the pouch or in the anastomosis area, has this happened to you or others? I can't wait for my bottom to have no pain, when does this go away?

lovedby2 I have had the same issues with gas. I was up the other day from 1 a.m. to ? with severe gas pains (it wakes me up) and then I have to get up to move everything.
Laying down is the only way I release the gas or on the toilet. After I go I also belch all the time. Not sure if this is going to change over time. I certainly hope so. 9-1/2 months out from take down surgery.

You guys are doing well to be able to release the gas build-ups. I am 2 years out and can pass gas without going to the toilet, most of the time. Putting your head lower than your bottom also helps move the gas through your system. Downward Dog yoga pose, get on all 4s and lower your head to the floor while your butt it in the air. Hold the pose 30 seconds or so.

At times when it feels like you have more BM to come out it helps to move around a bit on the toilet, like lifting a let in the air, standing up over the toilet, bending over getting your head closer to the ground, etc. That way you can just sit there once rather than having to return to the toilet in 5 minutes.

Have you noticed your weight can fluctuate a lot during the day? I am 5 pounds heavier tonight than I was when I woke up. I always drink a sports like drink first thing in the morning, as I wake up dehydrated. I also get headaches and nausea in the morning - then it's time to drink water with hydration.
Thank you for all the advice! I am going to try everything you mentioned. I too wake up very dehydrated and dome times feeling nauseas. I started having a Gatorade Mr t to my bed, because I almost pads out each time I have to get up at night, which is too often. I really wish I could only have one or two trips to the restroom at night!

I too have found rocking back and forth on the toilet helps to build up that feeling of having to go more.

Being two years out, how do you feel physically? Are you taking anything, meds? Have your BMs slowed down or at least managed to where your not always wondering where the restroom is when in public?

I am 31 with a 2 and 5 year old and I don't like leaving the safty of my home!

Step one April 2012
Step two August 2012
Step three takedown October 2012

Heidi -
It does get better with time as they have said. My body is adapting better than it was at 4 mos. I am finding now if I eat crappy foods I suffer a lot more. The better the food is it seems to be easier on my digestion.
I have been going to acupuncturist and that seems to be helping with inflammation. I kept asking how do you get rid of inflammation or learn to control it. I am now taking flax seed oil, chewable probiotics and liquid probiotics every day and have noticed a big difference with inflammation. I am willing to try anything. Also, like TE Marie has said about yoga doing that as well helps a great deal! Smiler

This certainly isn't the easiest road we are walking on!

Heidi, it sounds like you are quite busy! My children were 22 months apart so I know some of what you are going through. On top of that you've been ill. I wasn't diagnosed until my children were in high school.

I'm not the normal j-poucher, which is why I'm on this site a lot. I have chronic cuffitis and keep getting c-diff infections. I also have other health problems of which fibromyalgia is the worst. I'm also old enough to be your mother, so there's the age factor.

The doctor that did my flex j-pouch scope at Mayo showed me the interior of my pouch. I didn't take any medication as the nurses said he was real good at doing colonscopies on people without it. I had cuffitis, so it hurt a bit. He says my pouch is well constructed and a good size so in the future I should only have 4 BM's daily Time will tell.

As Roberta's said it's good to find out the foods, probiotics and supplements you need. It's a long trial and error road. A food diary might help. I'm bad at that. Something that bothers you today may be well tolerated in a few months. Your j-pouch is still learning how to perform a new function so it's a gradual process. If you look at now and how you were doing a month ago I bet you are doing better. It is a "s l o w" recovery.
It is good to hear positive out of this. I keep telling myself, be patient and keep the faith.

I too seem to have "flare ups", inflammation. I will definitely try the yoga and the food journal, I've been keeping one but in my head. I was recently told I needed to be dialated and had it done twice in the Dr's office...hurt like you know what. I recently lost my insurance, so I've tried to self dialate and it hurts, the opening is so small as well ad the anastomosis. Not sure how it really looks inside but, I had my rectum removed ad well, the anastomosis seems to be at a sharp right as you go in!?? TMI, I know but shouldn't it go straight in not curve? Any information on that will be appreciated.

Thank you both for talking with me, as you can feel so alone sometimes.


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