I usually use Reddit, but found this form while doing some research on MC treatment and it appears a lot of folks on this forum are VERY well-informed.
I wanted to provide my overall diagnosis (blood work, stool culture, etc) and to get your opinions on my treatment and maybe anyone that could provide their own experienced.
30, female, have MC - D, I was 15/16 when I first started symptoms but wasn't diagnosed until 23 and 29 got a second opinion and was confirmed MC.
Current Diet: Drink primarily only water; social drinker - one good margarita a week; I eat a variety of stuff - I love ethnic food with spices and I do tend to overconsume. I have a TERRIBLE sweet tooth, but more along the lines of cookies or icecream after dinner. I drink almond milk or lactose free milk, and I try to use creams that are lactose free.
(2024) Blood Work - normal other than high cholesterol, triglycerides, and low vitamin D. Calcium and Iron is within normal range, but Iron saturation is semi-low but within range. I will say my AC1 is at a 5.5% - but I do have a bad sweet tooth and working on decreasing sugars. My tissue transglutaminase IgA (tTG-IgA) was normal (2023 and 2024).
(2023 and 2024) Stool Culture Test - negative for H.Pylori and Salmonella; however, Pancreatic Enzyme was 200's (2023) and 300's (2024) - my NP thinks I may need a digestive enzyme such as Creon since normal levels, to her, is 500 and above. My calprotectin was normal (2023) and then elevated (2024).
(2024) SIBO test - No spike in my small intestine but did increase when reached in colon. I may re-take the SIBO test due to comment from Lab stating I "didn't complete the sample in a timely manner." Not sure what that means, getting clarification since I know I blew into the tubes every 15 minutes. Months prior to the SIBO test, I did the low-fodmap diet for 4 weeks. Still had diarrhea but less urgency - although I was eating less too.
Backstory and Treatment: When I was 15/16 I believe my MC was NSAID induced. At that age I didn't drink much water, which caused headaches, which then caused me to take ibuprofen/Tylenol/etc. I also didn't eat breakfast and for lunch I loved eating flaming hot Cheetos. All this combination I think caused my MC. In the beginning I was in such pain, going 10+ times a day, crazy spasms...like I was in a constant anxiety state...I was physically shaking. After some mental calming and experimenting with Pepto (idk how I took it but I remember doing that) and doing small workouts in my room, I ended up in remission for two years. Stomach/digestion was fine and normal stools (#4 on stool chart). I still had anxiety, but it didn't cause me to use the restroom.
After a year of college (I think I was 19/20), idk if I ate something bad or what, but all of a sudden diarrhea came back (with a semi vengeance) and then never went away. When I am anxious my MC-D really acts up and I have sudden urgency and can barely eat or drink anything. Lately, my back has been killing me at night and it really acts up if I eat something spicy or that doesn't sit well with my tummy. When I massage it, I then have to use the bathroom, again. I have taken budesonide and it helps with reducing pain when I took the 9mg dosage but, once I reduced to 6mg and 3mg dosage I then felt backed up. No matter the dosage, I still had watery diarrhea. No remission. I did low-fodmap diet for 4 weeks and still had watery diarrhea but less urgency due to low eating. I have tried cholestyramine lite packets (one or two at night for 2 weeks) and I felt kind of gross and did not notice a change. So now I want to find my own specialized treatment and need your help!
After my 3rd colonoscopy this week, this is the treatment I was thinking:
8-week course of Pepto Bismol tablets – 8 tab/per day for 8 weeks (3 morning before food; 2 afternoon before food; 3 afternoon before food) - I will take this while on the Autoimmune Protocol diet (also gluten free) during those 8 weeks.
While taking Pepto, I read that it can kill off all the bacteria in your gut. So, while taking Pepto, I wanted to take VSL#3 (2 pills morning and 2 pills in evening).
Once I finish the treatment, if I am not normal then I will do:
Creon - due to my pancreatic enzyme levels between 200 - 400.
I think my MC is also anxiety induced and read that TCA anti-depressants are best for those with diarrhea. So I was going to consult with my PCP to also take, maybe, amitriptyline during this time.
Please provide your thoughts and suggestions. It would be greatly appreciated! I am just...exhausted. I am so tired of worrying about a restroom when I go out. It crazy because, I don't necessarily care about the diarrhea...just that fact that I have the urgency to use the restroom and the stomach pains.
