MICROSCOPIC COLITIS SUPPORT

Welcome Kathyrn

one thing i have done over hte years is copy and pasted the text I wanted from various discussions/ posts and the put them into word documents.
for recipes etc i have printed those pages

I also did the same with the list of ingredients information ie all the names for soy copy the text from the post on here, pasted it into a word document, edited it to the font size and layout i wanted, then printed it and keep it in my wallet.

happy healing!

Hello fellow sufferers and all the supporters! I'm still a bit new here, but already I learned more than I ever knew before. It can be overwhelming, but as Gabes told me, take a deep breath and just start a little at a time. I previously complained that I often have constipation and diarrhea on the same day and same time. For that I was advised to try magnesium and Vitamin D3, which I have started. I still have to start the stage one on the diet plan. I often have the problem of not finishing bowel movements, and this can go on all day! Today I had to take Pepto Bismol so I could go to an appointment. Of course, that can lead to constipation. It's been a catch 22 for some time now! I get bloated and my stomach feels hard. I think you all get my drift, and I have no other way to explain it all.
Monday I'm going to my gastroenterologist. In the past he has written prescriptions for Budesonide (?) and another medication that sounds like Cholesty- like cholesterol. Bottom line, the meds of choice are unaffordable. I've changed my Rx insurance plan which starts in January, so maybe there's hope there.
I would really appreciate any advice on what questions to arm myself with when I see the doctor Monday! I normally just give him my symptoms and a list of meds I've been taking. Maybe there's something I should ask that hasn't occurred to me yet.
Thank you in advance for being there, and I hope my fellow "potty people" are doing better, and great! I also am so thrilled that I don't have to wait days for answers! This website is a Godsend. Oh, and I've ordered the book by Mr. Persky!!
Blessings,
Anna

Monday I'm going to my gastroenterologist. In the past he has written prescriptions for Budesonide (?) and another medication that sounds like Cholesty- like cholesterol. Bottom line, the meds of choice are unaffordable. I've changed my Rx insurance plan which starts in January, so maybe there's hope there.
I would really appreciate any advice on what questions to arm myself with when I see the doctor Monday!

the medication is cholestryamine - or brand name questran this has been used successfully by quite a few here, if you use search function look for word 'bile' and you will narrow down some of the recent discussions by various users.

so far as quesitons for your doctor - given that most doctors do not fully understand/appreciate the complexity of life with MC and do not acknowledge the importance of diet and lifestyle for reducing inflammation.

A vitamin D3 test would be good request.

Thank you Gabes! My favorite line is "what do doctors know?" They basically don't take the time to learn what really goes on in real life!
Ok. I will search "bile". As for the D3 test, what would they be looking for?
Be back soon!
Anna

its not the doctors fault per say - it is a fault of the medical system that pays them.
Doctors only do one semester of training on nutrition etc. once the leave university, majority of their ongoing training is provided by Big Pharma. Only functional doctors with keen interest in functional ' treat root cause' health do the study and research in that approach.

knowing what your Vit D3 level is, is key to knowing what dosage your supplementation should be.

First time-posting after a TON of reading HERE...hope I do this right! Diagnosed w/ IBS-D at 32, Diagnosed w/ MC-L 4/2017. 4 wks ago I completed a Budesonide plan w/ 4 mo at 9 mg, 3 mo at 6 mg, and 2 mo at 1 mg. Had to use Imodium a few times during that 9 mo. All the yrs of IBS-D were controlled by-and-large by including 1 serving of a starch carb at 1 meal each day. I recall a couple of times having to us Chlolestyramine (sp?). Now, w/ this new added diagnosis, the issue w/ problematic foods becomes complicated as the 2 diagnoses present very much in the same ways. My decision after doing MONTHS of endless medical research in reputable sites online is that my BEST options are to follow the MC phase 1 eating plan, continue to use the Imodium only when I have more than 3 episodes of full-blown diarrhea in a given day, and continue my daily food journal circling any suspect foods on that phase. After that is successful, I will slowly move to Phase 2. Already use the correct amounts & type of magnesium and Vit D supplements! Thoughts?

Wow this thread has been active. After being diagnosed and figuring out what I can eat, I tried to keep a few things, like butter, mayo...ugh, coffee creamer. Well got rid of all of those. I'm not on Budesonide, only Mesalamine samples for now and Immodium. I've been pretty good for a week or so. My morning consists of soft formed or mushy D. I eat rice, beef, turkey, pork, mushy carrots, mushy yellow squash, both peeled. I bought rice Chex and ate some yesterday, ok so far. Been on a GF, DF, soy, egg, low fiber since 12/1.

Just started Harvoni on the first since I have Hep C also.
I guess I'm waiting for the other shoe to drop.

Bone broth question?
1st attempt, store bought beef bones, as directed by Gabes....delicious.
2nd attempt, 95 dollars worth of bones from Slanker Farms, beef knuckle bone........it didn't smell good and ended up just jelled. Haven't tried with pork or chicken bones from the farm, what happened, then I read that's how it's suppose to be?

Hi Linda,

Welcome to the forum. It sounds like you're off to a good start. That plan should work. The main fly in the ointment that I can see is that if you are still eating any gluten, you may not be able to track down your other food sensitivities, because with gluten in the diet, you may react at all times, or at random times, without any rhyme or reason. At least that was my experience. A few months after I cut out the gluten, I was able to make some sense out of the entries in my food diary.

FWIW, IBS is usually an undiagnosed IBD, or an early (pre-diagnostic) stage of an IBD or some other digestive issue.

Good luck with your treatment program, and again, welcome aboard. Please feel free to ask anything.

Tex

Hi Tas,

It sounds like your healing is on track. It's possible that the Harvoni might cause diarrhea (that's a known side effect), but with any luck at all, it won't have any effect on your MC.

I'm not sure that I understand your question about bone broth, but if your concern is about jelling, that's due in part to using bone joints that contain a lot of cartilage. Gelatine is made of collagen, and knuckle joints are loaded with collagen. When chefs make stock, they expect it to jell. That's a characteristic of good stock. The gelatine will dissolve when you heat up the broth/stock. If you would rather not have the jelling, use bones without the joints (or with fewer joints).

I don't claim to be a cook, but that's my understanding.

Tex

Hey, Tex -

Thank you for the kind words of welcome! I know there is NO grain except rice on Phase 1 Recovery Diet so that means I will not have any gluten to deal w/. I think maybe you were referring to my 36 yrs of the IBS only diagnosis. But w/ the added MC now, I will be following the Phase 1 plan to the letter, my friend. AND that should make journal entries streamlined! I haven’t even glanced at Phase 2 so that I won’t get in a hurry to move on, and because I want to have a clear & concise focus on Phase 1 only. I started my Phase 1 today! YEAH! I cook for my husband and I, so today we are picking up a few groceries I need as well some extra veggie choices for him. I’m excited and feel like I have found the Golden Fleece in this site w/ so much info, support, real people living real life w/ MC! I’m totally convinced that this is all very doable!

I have a new referral into OSHU in Portland w/ an experienced GI. This may bring some frustration back into my life as over the yrs, I find that many specialists have a deficit in their listening skills but are enhanced in their speaking skills in office visits....blah, blah, blah. But I’m determined do do THIS plan because I have already done their 9 mo of Budesonide plan. We shall see how this goes...hope it doesn’t become a matter of who has the biggest gun, because as the patient, I will have the final say.

I had an interesting visit yesterday w/ my knee surgeon at OSHU looking at possible knee replacements later this yr or next yr. I explained the new MC diagonosis I have since I saw her last and problematic prohibited use of NSAIDs. She wants to discuss appropriate meds for that kind of surgery BEFORE she will do the knee replacements. I was happy that she wanted the info beforehand! I could see that she had concern w/ my not being able to use the NSAIDS. She did give me a steroid shot in each knee saying that since I had been on the Budesonide, but off it now for a month, the shot shouldn’t create a problem. I had to have the shots, so much pain from being bone-on-bone and not even occasional use of ANY NSAIDs for 9 months! We’ll have to see how surgery and meds are going to be handled...

Good, you have the right attitude, because avoiding gluten is the cornerstone of our diet plan. Yes, a lot of doctors, especially gastroenterologists, suddenly become hard of hearing when their patients start making suggestions. You have the right idea, because we have to take charge of our treatment (and our health in general). Most of us are here because we weren't satisfied with the way our treatment was going.

If your husband is willing to adopt the diet with you, that will not only make your cooking task simpler, but it will eliminate most of the situations where your own food might get cross-contaminated.

Basically we have a choice of acetaminophen, tramidol, or narcotic painkillers. Of course there's always ice packs. The antibiotics can be tough, but sometimes we gotta do what we gotta do.

Tex

Hi, Gabes -

Today was my first day on Level One Recovery Diet plan! All went very well, tasted great, filling, satisfying...best of all BM has already tightened up to a regular BM like I had a yr ago...before my MC diagnosis and subsequent 9 mo of Budesonide!

I am slow-cooking the beef bones to make the broth as I post. A few questions: What is the purpose of the cider vinegar? Can I use plain white vinegar or balsamic vinegar...don’t know 2 cents worth of info about vinegars. Also, is there a place w/in the site where I can find a few meal ideas for Level One foods? I love to cook! I found the bone broth, stew, sweet and savory rice, and breakfast porridge.

Yesterday, I read probably 10 pages of this thread and the one on antibiotics/supplements, went to the store this morning, bought some of the basics, and started this level this morning! Thanks so much for the ideas, info, support, ALL of it is SO helpful!

Go Linda!
so pleased that you are seeing improvements in your BM.

Cider vinegar will help draw minerals out of the bones and give the broth a bit of flavour. the other vinegars do not achieve this. I personally do not use cider vinegar, so it is your choice if you use it.

yes there are some meal ideas in the dees kitchen http://www.perskyfarms.com/phpBB2/viewforum.php?f=7 area of the forum and Meal suggestions area http://www.perskyfarms.com/phpBB2/viewforum.php?f=53

keep reading, keep asking questions and happy healing

tex wrote:Hi Gavin,

Welcome aboard. I'll attempt to answer your questions. First off, be sure that your flare isn't being caused by one of the medications that can cause MC, such as antibiotics, NSAIDs, PPIs, SSRIs, SNRIs, tricyclic antidepressants, bisphosphonates, ACE inhibitors, statins, beta blockers, etc. If so, avoiding it may be all that you need to do. If that's not the case though, welcome to the family of folks who have MC that's perpetuated by food sensitivities.

Tex

Wait, Tex? I've been on NSAID'S for years and SSRI's for years, both 20+ years, I was going to see my GP about getting off SSRI and switching to a tricyclic antidepressant, like Amitriptyline.

Yes, you will almost certainly have to completely discontinue the use of NSAIDs and SSRIs in order to be able to achieve remission. Our experience (the combined experiences of the members here over the years) is that very low doses (10–15 mg) of amitriptyline can be used to help regulate motility, especially in cases where constipation is a predominant symptom. It can sometimes help to bring remission. In cases of diarrhea-predominant MC it may be less likely to help or it may make symptoms worse. Larger doses of amitriptyline that are considered to be therapeutic for treating depression or anxiety issues (75–100 mg) are highly addictive (discontinuing the drug is virtually impossible) and often promote diarrhea that cannot be overcome by diet.

Depression and anxiety are not diseases, they are symptoms of a chronic magnesium deficiency. Many medical professionals have been making a good living for decades by either "conveniently" remaining ignorant of that fact or intentionally hiding it from their patients so they can prescribe drugs instead. Correcting that deficiency can often bring a surprising resolution of symptoms (depression and anxiety symptoms). That said, if you still feel the need for a drug, the only one that is usually safe for MC patients is bupropion (Wellbutrin). As is common with drugs prescribed to treat depression and anxiety, bupropion isn't effective for everyone, of course.

At least these are my thoughts on the issue.

Tex