Bowel Pain

[tlras]

Sorry....been putting it off. Need hubby to help me with that. I have no idea how to upload a pic. You are right though....it does help. I'm so not computer friendly...lol! I know how to upload to facebook though....haha.

Had a Christmas celebration with my in-laws (all day). Brought my own food. There were deviled eggs there that my MIL made and she had mixed in other stuff with the yolk. I asked her specifically what was in it....all sounded good. Then find out after I had eaten it that it had butter in it. Figures this would happen as soon as I get off the pepto. Next time I'll ask to see the recipe....jeez!! I hope I don't react tonight or tomorrow.....so far so good.

Terri

[Gloria]

My daughter's in-laws invited me to their house for dinner Christmas Eve. When DD's MIL asked her what I can eat, DD said, "Oh, don't worry about it, my mother will bring her own dinner." I actually was grateful she said that. It makes everything much easier and removes any worries on my part.

Gloria

[Carriagehouse]

Hi Sally
I can so completely relate to what you're going through. I am brand new to this diagnosis, meds and diet changes also. I am taking the Cholestrymine (powder to control bile salts) and it has helped tremendously with the frequency of D, but I cut way back from the prescribed amount because it caused a 2-day bout of constipation and stomach cramps. I only take a teaspoon a day, dissolved in liquid. Meanwhile I am diligently eliminating gluten, dairy and any other foods that seem to give me trouble.

I have suffered from colon/bowel spasms for so many years and the doctors have just shrugged them off. They have gotten so bad, I actually pass out from the pain, most recently falling backwards onto a slate bathroom floor in the middle of the night and smacking the back of my head with enough force that it woke my husband from a sound sleep. I now keep the meds next to my bed (it most often happens in the middle of the night for me, for some reason) and I remain laying down until it passes.

The holiday season has been really, really difficult for me also. I am the Mom who always bakes for a full week at Christmastime and my grown children still expect all their favorite treats. I can't figure out how to cook regular meals for my husband while trying to drastically limit what I'm eating at the same time. He is feeling deprived because we have always loved to go out to eat, and I am now afraid to because of the lack of control over how things are prepared. He gamely tried my first attempt at baking gluten free cookies today, but let's just say they were not a hit. Yet another challenge for me, but I am determined to master it.

I hope it helps you to know that you are not alone in this journey and the struggles that accompany it. I have been so inspired by the stories of the people who have come before us, and have come through this awful disease to the other side .... the manageable side. If they can do it, you and I can, too.

Hoping you are feeling so much better by now.

[SallyB]

Hi everyone

Gosh the whole of the world is devastated with the shooting of those little one's and teachers! Unbelievably sad...do you think gun laws in America will ever be changed?

Thank you all so much for the help and advice it means such a lot. I know I am not a strong person and am really having trouble remaining positive and strong in my resolve to try and get this *Thing* under control by diet.

Steroids are not a quick answer for me as I am awaiting to go for patch testing to see if I have an allergy to the steroids as I had a nasty reaction to a steroid injection in my hip earlier this year and 3 years ago had a previous reaction when I had injections for a frozen shoulder.

The pepto bismal option is not available here I asked my Gastro when he rang me on Friday. Whilst we can buy pepto bismal over the counter it is not issued by a Doctor so do you guys have it prescribed for you or do you but it OTC?

I had a long chat with my Gastro on Friday and you know its amazing the different attitude he seemed to have now that I have got a bit more knowledge about MC..I felt almost as if we were talking one to one! odd....Anyway Tex you will be glad to hear I have asked him to read your book so shall be dropping a copy into him next week! Maybe the more Gastros that read it will have more of an open mind about treatments etc.

I am friendly with a radio presenter on our local BBC radio station and she has chatted to me about possibly doing an interview with her in the new year to discuss MC...will keep you posted, and my gastro has said he would be happy to be involved to! WOW

I did ask my Gastro why there seems to be more people from USA with MC and he said its because colonoscopys and done far more often there...is that right?

Had friends here yesterday and we went out for the day and my MC really behaved itself...the evening was a different story!

[SallyB]

Hi again

On Friday I visited a nutritional therapist and chatted for about 2 hours about MC. I have lent her a copy of Tex's book for her to read to get a true picture of the condition and she is then going to help devise a diet plan for me.

I also went to see a counsellor as I am not dealing with this very well and she was lovely so I have booked an appointment with her in the new year as everything closes for two weeks over Christmas and New Year. She is going to send me some meditation cd's and I am thinking of doing a *Mindfullness* course in January.

I can't at the moment do any more to try and get this MC under control.....

[tex]

I did ask my Gastro why there seems to be more people from USA with MC and he said its because colonoscopys and done far more often there...is that right?

I'm sure that your gastroenterologist is correct. Before colonoscopies were more widely used here, MC was considered to be a rare disease. Now that the GI specialists are beginning to actually look for it, they're finding that it's actually rather common — more common than Crohn's disease, ulcerative colitis, and even celiac disease.

Everyone here buys Pepto-Bismol over the counter. There's no point in getting a prescription for a medication that's available without a prescription.

You're doing a good job of retraining the medical professionals. Thank you for spreading the word. That will surely bring benefits to patients who will be diagnosed in the future.

I hope you're feeling better today.

Tex

[SallyB]

[b]Carriagehouse[/b]

Hi there

Aww poor you the pain is horrific isn't it! Do the powders really help with the D? I might give them a go but don't want to go through those horrific bowel pains...

Sally
x

[Carriagehouse]

It's working for me in a very small dose, Sally. Maybe do the opposite of my experience and start with a little and gradually work up to more if you need it? It only helps control the frequency of D, it doesn't cure anything. My early morning hours are still spent back and forth to the loo, but I am able to be out and about more during the day :)

[SallyB]

[b]tex[/b]

I think I really need to try! It will be my 2013 resolution to find out more about this and try and get my Gastro at least on our side.

MC is very much regarded a rare thing as we do not do colonoscopies here as a routine, you only get one if they suspect something is really wrong and my Gastro told me from the beginning that was what he was looking for.

I shall take your book to him tomorrow along with a bottle of wine ( not bribing him with alcohol honestly) and hope that he will read it and see it from another point of view.

I am having to take every day as it comes. It's weird I went all day yesterday without D then last night Wham....who knew why!

Hope you are well today Tex.

[SallyB]

[b]Carriagehouse[/b]

Oh I know that up and down in the night and early morning feeling so well. Thank you so much will give it a go

Sally
x

[SallyB]

Hi there

Can anyone tell me how much pepto bismol you take to help with MC and do you take it everyday????
Thought I might give it a go....

Thank you

[tlras]

Hi Sally,

The pepto protocol is 8 pills a day for 8 weeks. I took 2 before breakfast, 2 after lunch, 2 after dinner and 2 at bedtime. I then weaned off after 8 weeks at about a half a dose less a week. I actually only took 7 pills a day as it worked so well for me. I always make a joke about my Pepto. I shop at one grocery store and I swear I cleared their shelves of most of the Pepto....lol! And it's not expensive either! I sure hope it works for you! Sending good vibes your way.

Terri

[SallyB]

[b]tlras[/b]
hahahahaha did they have to order extra supplies for you! So glad it worked for you xx

[wnorm]

Dear Sally, I I hope you feel better. I just went reluctantly on Entocort this week a fter Asacol, Cholestyramine, Pentasa,Imodium,Pepto, proveid neffective. Right now I'm sitting down to a meagre lunch of Japanese rice, water. and probiotics. Yum. I guess I shouldn't have tried the lettuce, dried fruit, raw orange.oatmeal, chocolat, vinegar etc two days ago. I was testing the efficacy of the Entocort. Boy was I ever stupid! I was so tired of my minimal boring diet. I just wanted to eat one "normal" meal, especially with the holiday cooking and all the temptations. I've been home, doubled up, and mostly in bed all week-end.In a few days I plan to introduce tiny amounts of trigger foods. I have to figure out what I should try first. Any thoughts? Happy holidays to everyone! Good health

[Gayle]

SallyB said:

I did ask my Gastro why there seems to be more people from USA with MC and he said its because colonoscopys and done far more often there...is that right?

Well that’s one quick answer -- which is partially correct. According to current strategies regarding early detection of colon cancer, a routine colonoscopy is recommended at 50 years of age. If pre-cancerous growths are found, they can then be removed during these exams, thus preventing these abnormal growths from developing to full blown colon cancer in the future. This DOES NOT MEAN that biopsy’s (which are necessary to diagnose MC) are done routinely during that exam, unless they are otherwise indicated. However, as MC is becoming better known, it is also more often suspected -- and looked for via colonoscopy or sigmoidoscopy.

But yet another thought would be that a large percentage of people affected in the USA have descended from Northern Europeans. Please go and find the file heading further down here labeled “Polls Related to Microscopic Colitis and Treatment Options” and then find the survey there on “our Ethnic Roots”. Of course this was not a scientific poll by any stretch of the imagination as respondents were all people who are part of this chat group. But still, you see what a disproportionate contribution was made by people of Northern European decent. So you see --- this can all really be blamed back on you guys over on the other side of the pond!!

Europeans also seem to be much further advanced that Americans with regard to gluten free eating. The superior pastas that I am able to get here, are the ones that are imported from Europe (mostly Italy) at what I consider to be an insane cost. So Egg noodles are a treat rather than a staple at our house. It would seem that there must be good reasons why so many Europeans use these items in their diets. Could it be that a high percentage of Europeans are in some way or another, intolerant of gluten?

As long as you are having discussions with your Doc. I would recommend that you also go to this web-site and print it off (yes, all 8 pages). Then you can go thru it and underline things you don’t think you are understanding, or write your questions in the margins. Take this copy along with you to Doc visit so that you can get him to see what you are questioning, and then he can discuss some of these points from his point of view and vantage point.

http://www.mayoclinic.com/health/collag ... is/DS00824

This will be yet another aide to helping you understand this disease.


Gayle