Anyone here had MC their entire life? - Newbie here

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kroekatoa
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Anyone here had MC their entire life? - Newbie here

Post by kroekatoa »

Hi,

I'll tell my little story, and then I have a few questions for everyone here!!

I have had microscopic colitis symptoms for as long as I could remember, though I was not diagnosed until I was 17 years old and had a endoscopy/colonoscopy with biopsies. My mom has often told me I was a "colicky" baby and always had explosive diapers. I have maybe one or two memories of having actually formed, "normal" stools when I was very young. I'd say my symptoms became worse around puberty; when I had my menstrual cycle I would have severe cramps and burning black diarrhea. Otherwise my baseline at that point was just explosive watery brown stools. As I got older, nausea, gas, abdominal pain, fatigue all became much more common. When I was in middle school they did glucose, fructose, lactose, celiac tests etc. All negative. Stool samples negative. The next step would be colonoscopy which I was way too freaked out to do. I finally followed up with a GI my senior year of high school after having a horrible day of vomiting and diarrhea nonstop and going to the ER, then had the endoscopy/colonoscopy which the doctor said showed MC and offered to prescribe me budesonide. I was super freaked out about using steroids at the time so I never took the samples he gave me. They were also extremely expensive and would have cost my parents $400 a month I believe (so my mom was pissed I never took the samples and let them expire lol). I decided since I had lived with my symptoms for most of life, wasn't having any nutrient deficits from it (as far as I knew), and had only a few bad days a month, I'd just continue to live with it and not take medications. I also thought, if this is something I've had my entire life- why would one short term course of medication be the magic fix? I was scared (and still am) that if I started steroids that I'd maybe get better but then would go back to my "default" after tapering off them.

So now I'm here, senior year in college and my symptoms have gotten even worse. I spend a lot of time on the toilet these days. I went back to another GI in April and had another colonoscopy with the same diagnosis and proposed treatment- though he also gave me some samples anti-inflammatories to try first before corticosteroids (I have yet to do this but plan to soon), however he said he was almost certain these would not help at all. I also learned this time I have "lymphocytic" colitis. This week I noticed blood in my stool for the first time and went to a clinic who said I had hemorrhoids!! I've never had these before and am in a lot of pain in my rectum. I have had on and off similar rectal pain since my colonoscopy in April. I have also had severe, stabbing right lower quadrant pain before & during bowel movements several times a month since the colonoscopy. I had similar pains before it, but not nearly as bad. I had asked my GI about this, but he said this is normal for MC.

My questions for anyone & everyone:

1. Has anyone else had MC since they were born/very young with no clue if there is a specific event which may have caused it? Has anyone been able to go into a long remission after having it their whole life, if so, what helped that to happen?
2. Any tips for hemorrhoids? I have some suppositories I am going to pick up from the pharmacy tomorrow.
3. What are symptoms of malabsorption/nutrition? How is this diagnosed typically? I am pretty sure I don't have this issue but I am curious. My vitamin D level was like 13 in January of this year and my Dr. made me take 50,000 units once a week for 8 weeks.
4. What do you do about brain fog??? I have had this a few times and it's really scary. I feel like I'm having a stroke or something until I have a huge bowel movement and I feel so much better.
5. Does anyone else get horrible right lower quadrant pain when having a bowel movement from time to time?

Thanks in advance to anyone who takes the time to read/respond!!

-Sarah :grin:

Sidenote: No known family history of MC... I do have a cousin on my father's side with Ulcerative Colitis and another cousin who is their older sibling who has celiac disease.
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Gabes-Apg
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Post by Gabes-Apg »

welcome Sarah
sympathies that you had to find us and your health issues thus far in life

I am one that had digestions issues my whole life (3x bowel surgeries by age 26 due to birth defects) and also had lifelong hormone issues

to answer your questions
1. Has anyone else had MC since they were born/very young with no clue if there is a specific event which may have caused it? Has anyone been able to go into a long remission after having it their whole life, if so, what helped that happened?
yes we have a few young members (as in under the age of 5) and many here that like me had lifelong digestion issues
2. Any tips for hemorrhoids? I have some suppositories I am going to pick up from the pharmacy tomorrow.
coconut oil works really well both orally and topically.
consuming it orally will help to ease the poop out. use it topically to protect the skin at the anus etc.

3. What are symptoms of absorption/nutrition? How is this diagnosed typically? I am pretty sure I don't have this issue but I am curious. My vitamin D level was like 13 in January of this year and my Dr. made me take 50,000 units once a week for 8 weeks.
the vit D the doctor gave you is D2 form. the body needs the D3 form to use it for inflammation etc. I would encourage you to swap across to a good Vit D3 form to optimise benefit
4. What do you do about brain fog??? I have had this a few times and it's really scary. I feel like I'm having a stroke or something until I have a huge bowel movement and I feel so much better.
avoiding triggers that cause inflammation is main way to alleviate brain fog. Healing the gut and fixing nutritional imbalances will also resolve this issue

5. Does anyone else get horrible right lower quadrant pain when having a bowel movement from time to time?
cramping pain is very common. before the MC diagnosis mine was so bad that i would have to sit down, or if i was driving i would have to pull over. it was equated to bad contraction during childbirth level of pain.
these went away once i got onto low trigger (low inflammation) gut healing eating plan and made some lifestyle changes.


hope this helps, keep reading posts here and you will gain some good knowledge to get your life back!
a good place to start is the 'guidelines to recovery' section and the 'members success stories area'
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
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tex
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Post by tex »

Hi Sarah,

Welcome to our Internet family. You are the first liftlong MC patient that I am aware of. Our nearest case is a young lady who was diagnosed at the age of 2 and 1/2, but she had diarrhea for at least 5 months prior to that according to her mother. Here's her story:

My 2 Year Old was just diagnosed with LC :(

I'll attempt to answer your questions. I see that Gabes has already done so. These are my opinions based on my own and others' experiences.
Sarah wrote:1. Has anyone else had MC since they were born/very young with no clue if there is a specific event which may have caused it? Has anyone been able to go into a long remission after having it their whole life, if so, what helped that happened?
There are people who have spontaneous remissions, similar to other IBDs, but they come and go at random.
Sarah wrote:2. Any tips for hemorrhoids? I have some suppositories I am going to pick up from the pharmacy tomorrow.
Here's a thread that discusses that issue.

sore rear end!
Sarah wrote:3. What are symptoms of absorption/nutrition? How is this diagnosed typically? I am pretty sure I don't have this issue but I am curious. My vitamin D level was like 13 in January of this year and my Dr. made me take 50,000 units once a week for 8 weeks.
Your vitamin D test is one of the ways. MC patients virtually all soon become deficient of vitamin D and magnesium, and after a few years, they usually become deficient of some of the B vitamins, especially B-12, B-9, and B-6.
Sarah wrote:4. What do you do about brain fog??? I have had this a few times and it's really scary. I feel like I'm having a stroke or something until I have a huge bowel movement and I feel so much better.
You resolve brain fog by resolving the symptoms of MC so that you can absorb nutrients normally. Another way to treat brain fog is to take the active forms of vita,ins B-12, B-9, and B-6 in the right ratios. They are:

L-methylfolate Calcium (as Metafolin®) 3mg

Pyridoxal 5?-phosphate 35mg

Methylcobalamin 2mg

You can treat this with a commercial vitamin product such as Thorne Methyl-Guard Plus. Here's a link at Amazon:

Thorne Methyl-Guard Plus at Amazon
Sarah wrote:5. Does anyone else get horrible right lower quadrant pain when having a bowel movement from time to time?
Yes. That's very common for many/most MC patients. I had pain that would sometimes almost bring me to my knees when it hit.

Again, welcome aboard, and please feel free to ask anything.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Erica P-G
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Post by Erica P-G »

Welcome Sarah,
Glad you found this site :wink: I feel bad that you've had to endure MC/LC so many years now :shock:

I had Vit D levels of 9 back in 2009. Beginning in 2007 my body finally went full LC on me and I tried to figure myself out for 5 years turning 45 yrs old then and my GI didn't know how to help me.

Fast forward to 2015 and I knew I needed to get VitD3 in me but it wasn't really doing very good it took me 6 years to get it to 44... :shock: I found this forum and learned I needed to add elemental magnesium in order for my VitD3 to increase properly.... I'm happy to report that in 2.5 years I have a VitD level of 83 :grin:

I'm not perfect I'm still healing and have diarrhea days and in turn I get a small external hemerroid. I haven't bled yet thankfully but they don't feel good so I take a warm shower keep it clean and I take an antihistamine and stick to my safe foods.... Progress not perfection ok :wink:

I'm learning my sleep is important and the quality has to be good too. I had lots of brain fog until I removed gluten, dairy an soy from my diet immediately and added the magnesium to my VitD protocol.

There are many places to find safe supplements I have gotten most of mine from Vitacost.com and recently ordered the ReMag lotion by Dr. Dean.com it's a bit spendy but it works absolutely wonderful if one doesn't want to take magnesium internally all the time.

Just my two cents..... keep reading as much as you can, you will start feeling better :wink:
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
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kroekatoa
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Post by kroekatoa »

Thanks everyone who has responded, this has all been super helpful!

I started using hydrocortisone cream and have had immediate relief of rectal pain, so yay!

I think the next steps for me are to start removing things from my diet and maybe enterolab testing if I can't figure it out.

Thanks again guys!! I really appreciate it and am so glad this forum exists!
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