Visit the Microscopic Colitis Foundation Website
Sometimes life unfolds in mysterious ways, and we are not shown certain things until we are in a place where we can accept them and do what is needed in the right environment and that is certainly where I find myself now, at 60.
I had my digestive issues all my life, mostly terrible constipation. In my 30’s I believed it was estrogen dominance, as I had been on the pill for many years.
In 1994 at age 35, I had my first real episode with the crazy “D”. At the time I blamed it on my moving in with my boyfriend (who later became my husband), having the only bathroom connected to the bedroom and being bowel shy. Started with what I thought was the flu, after my boyfriend left on a business trip. It was incredible. I dropped down to 115lbs in no time and at the time I was very fit and all muscle so I really looked emaciated. Working full time with that was hideous, as you all can relate. I was under the care of a gastro guy for about a year. I remember not being able to tolerate Questran (Colestyramine). I realize now that my body was so inflamed it couldn’t handle it or perhaps I was taking too much. I was a smoker back then too. It took 4 and 1/2 months on prednisone to get me in remission. I developed the squirrel cheeks and got really cranky before I weaned myself off without help from the doctor.
Through the following years I took a myriad of NSAIDS for lower back pain and PPI’s for suspected Gerd. Back in my 20’s I was also put on every antidepressant known to mankind. I was even put on lithium for a while. I weaned myself off. Doctors seem to like to put you on drugs, but not very interested in getting you off them I find.
I realize now that I was not so much clinically depressed but rather suffering from PTSD from some very traumatic back to back things that happened to me back then. Fast forward to 2014. I had been fairly ok I thought, still had lots of digestive issues but not like 1994. I had a colonoscopy at that time but was never followed up on and never heard much in the way of results, except on his way out he said they removed a polyp and I was told later it was benign. In Canada, a lot of times no news means good news so I never thought much about it. After 20 years and for various reasons, the marriage inevitably broke down. The stress of dealing with the marriage breakdown and all that went with it eventually led to another, even worse episode in 2016, after a suspected food poisoning from eating incorrectly cooked fiddleheads (my fault).
By this time, I was doing all my own research on the internet and found out about the possibility of SIBO. I did the lactulose breath test and after 120 minutes the hydrogen registered 99ppm and at 180 minutes it was 200ppm. A score of over 20ppm was considered positive. So I did a whole bunch of herbs(some were way too strong) and finally Rifaximan helped me.
Again remission. But by this time, I was so exhausted from fighting this, that I had to reduce my work week, and at the end of 2017 I retired. Best thing ever, along with living alone and creating a new life that I was in charge of. But then I start sliding, bit by bit downhill again. Topped it off with picking up a bacterial infection in Mexico this fall and that started the whole merry go round again. It is devastating. Going down that rabbit hole again is a mind crusher!
Another colonoscopy was scheduled, not because I was sick, but because I am on the five year screening program because of the polyp in 2014. I finally got diagnosed with lymphocytic MC, and that is also when I found out that in 2014 there was a diagnosis of Eosinophilic colitis from random biopsies, but because it was considered a mild case, it was never mentioned to me!
So, in my mind I am thinking that this probably goes back to 1994 and I am finally getting the real story after all these years.
In hindsight I do not know what I would have done with that information in 2014, I may not have had the strength to deal with what was required at that time, I was dealing with so much already. But in 2016, that information could have become a game changer, because I was reading all about FODMAPS, and the SCD and might have been more open to those changes.
Anyway, here I am! GF! DF!EF! since January 1st. Oh, and no wine either. And feeling so much better already.
I know I will need your help when my test results come in. I also worry about my kidney function. I have only one kidney left (another long story) and my GFR decreased from 54 to 44 in a month. 60 is ok. Not sure if I have to really work on the dehydration aspect, and also how much magnesium I should be taking. I only do transdermal and am getting about 300 mg a day (just started that in January)... I asked my doctor (GP) for a vitamin D and RBC magnesium test ( he did not know what that was
) and waiting on those results. Oh and he also called SIBO a bunch of airy fairy stuff, reiterated by the new gastro guy who says diet has nothing to do with this nuisance disease and called the whole SIBO thing a red herring. SIGH. So I will be have no real contact with either of those doctors unless I need tests. I have a naturopath that I feel good talking to, so that is good.Sorry for this super long post, I promise to try keep them shorter in future and thank you for letting me participate in this life changing support group!
