I wonder if anyone can help one of my fellow Ozzie MSers who has appealed to me for information. Here's the letter that she sent, and as I don't have the right answers for her, I'm wondering if anyone has any words of wisdom that might help her.


For years, even before my diagnosis (diagnosed Oct 18th 07) I have been suffering from tummy pain/wind - probable IBS, but not officially diagnosed.

I did Boot camp in 2005 and hurt myself, and then went to physio. Whatever he did caused sciatica - disc bulges x 2. After the 1st disc bulge I tried pilates but too embarrassed to continue that when I developed flatulence and loss of control.

I have noticed since being diagnosed that I don't have very good bowel control and it is distressing. I have tried many medications and seen a physio about pelvic floor exercises.

I went off Prozac thinking this did something but it made no difference. Somedays it feels like everything would fall out. Maybe twice per week if that, I get the normal urge to go but I really need to run.

I can't go the gym sometimes due to embarrassment. I have tried going off different foods but this hasn't made any difference, although certain foods do stir things up.

I am even researching any operations that could fix the problem as I am not going to go through life putting up with this.

My mother says it is nerve damage and my neurologist has referred me to an continence advisory nurse. I have even tried laxatives but these cause accidents.

Do you know of anyone that has the same problem, and if so what have they done to ease it?

I am so sorry about your friend, Anne..What a downer..

I have had that problem on occasion, but not as a rule....With me it usually happens when I am overly nervous about something. I can feel it churning. It happened today...My Mouse on my Laptop died and a stranger came over to fix it.. Thats all it takes to set me off..

I don't know what might help your friends frequency of the problem. I will pray that she will find answers, soon..

Two things tend to make me gassy... too much sugar in my diet and sugar free chewing gum that is sweetened with sorbitol.

Has she tried eating yogurt regularly? Or taking probiotics?

how bout a gastroenterology consult?

Koala,

I've experienced what you are going through. Though I am in limbo land of my symptoms and the doctors don't know what is exactly going on with my body right now I do understand what you are talking about.

When I was in my twenties I had a similar problem with flatulance. It was a very embarrassing problem. No one understood it. I too, tried taking away foods, avoiding pop, caffiene, etc. went to therapy and even the therapist didn't comprehend what I was talking about- which really threw me for a loop. I went through numerous MD's and finally one sent me to get a colonoscopy test. Everything came back okay which was a relief but they still had no explaination at that time.

In the midst of all of this I also was having difficult PMS problems. I didn't understand what was going on with that either. Years later my DH and I ended up going through infertility to find out I had endometriosis all over the colon and female organs. I had two seperate lap outpatient surgeries to remove the endometriosis. It helped relieve the flatulance but then it always came back- the endo did. Usually, for most women it goes away. For my case, I ended up being the 1% that ended up with it destroying my female organs and the doctors were worried it would spread to more organs so on my 30th birthday- they told me I was to have a full hysterectomy. It ended up being the best thing for me. I thought that the surgery was a blessing. I felt great afterwards and have not had any problems except constipation since. No more flatulance either. For me, it was all of that endometriosis causing it in my situation.

My mom sometimes has flatulance problems, but hers is different. She is always eating plain yogurt or any form of yogurt with culture in it. The yogurt is suppose to help balance out the enzymes in your stomach. Another person mentioned the yogurt as well. It really does help and if it doesn't work, then you need to continue as being the best advocate you can be with this. Don't give up hope.

Also, when the flatulance problem began, and I didn't know anything about it or the endo, which was about an 8 year period- so the flatulance problem lasted that long for me (the yogurt didn't work for me due to the endo) it was very embarrassing at work. I took a lot of slack for it, was ridaculed, and eventually quit a job because of it. People can be very stupid, childish, and mean even when they are grown adults. And, that- is very, very sad. My heart goes out to you.

Hang in there!!

Hugs,

Coffeegirl

Thank you so much everyone for your suggestions.

I've put them all together in an email and forwarded them off to her. I'll let you know how she gets on when I hear back.

Hi

I have had a similar problems with belching and flatulence, in addition to severe constipation. For me the solution has been to eliminate all gluten from my diet.

According to my research it appears that many of the autoimmune diseases have been found to be commonly associated with gluten-intolerance and even full blown celiacs disease.

Merle

Thank you so much Merle....I didn't know that autoimmune diseases have been related to gluten-intolerance, although I daresay I should have.

I'll send off another email right now, telling this Ozzie MSer what you said. Thank you again. I'm sure she'll be very appreciative.