Sorry so long, what should I do?

moquack · Post by **moquack** » Fri Jun 09, 2017 1:29 pm

I am in my early 30's and was recently diagnosed with microscopic colitis. My symptoms are loose, thin diameter bowel movements 4-15 times per day. Sometimes it is watery, but mostly loose. Urgency, cramping, gas. Mucus. Bowel movements are usually small amounts and I frequently feel the sensation of incomplete emptying after I go.

I do not have much faith in my current GI doctor. For one, my colonoscopy was the third time I have received conscious sedation & both times before it did not work for me. I informed three people that morning as well as the pre-op nurse on the phone the day before. I was still given the same medication and was awake the entire time. The nurse handed me a wad of gauze to wipe my tears, because I was crying during the scope. After the scope the doctor came in and said my colon looked normal and if the biopsies were negative then I have irritable bowel. I knew it wasn't irritable bowel. Once the biopsies came in, his NP called with results and said it showed significant inflammation and I was to start taking Lialda 1.2gm three times a day for at least 6 months. I asked about microscopic colitis. I am a nurse and was not familiar with it. I asked about the medication. She asked if I would like her to mail some information on it. Um okay, sure thanks...In my quest to figure out what the heck was going on with me, I came across a study in a GI journal dated 2016 that clearly stated budesonide was the preferred treatment over Lialda (mesalamine). I explained what I had read to the NP and asked why the Lialda was chosen over the budesonide and she just replied saying the budesonide tends to have a "higher side effect profile". I also asked about celiac or food sensitivities causing MC. She said no, that wouldn't cause it, but agreed to check me for celiac which bloodwork came back as negative for that. Needless to say, I am currently in the process of seeking a second opinion.

Besides the new diagnosis of microscopic colitis, I have had a few other issues pop up this year. I was discovered to have significantly low iron: 13 (50-170 reference range), TIBC 243 (250-450 reference range) and percent iron saturation 5% (15-45 reference range), but ferritin level was normal at 48 and I am not anemic. No one has explained this to me. My primary just said the ferritin is normal so I do not need a supplement. I definitely feel exhausted a lot and still wonder if this has anything to do with it. I also had a lot of hip pain earlier this year, which was discovered to be a labral tear and was given a steroid injection and NSAIDs which didn't help. My back also went out, but this has happened before due to a herniated disc and walking funny on my sore hip probably caused it to flare up. I also have been having "hot flashes" where I will get a red burning rash across my face out of nowhere that will come and go. The dermatologist gave me a cream and said it was rosacea. The cream didn't help. Then the whole MC stuff started happening...

I would just like to hear any feedback or advice any of you may have. Sometimes I wonder if some of these things are interrelated and cannot find a provider who will look at the entire picture. I have read on the board that I should cut out gluten, but I wonder if I cut it out now how will I know if its the lack of gluten or the Lialda helping? What do you think?

Erica P-G · Post by **Erica P-G** » Fri Jun 09, 2017 2:45 pm

Hi Moquack,

So sorry for your Mc diagnosis, but am glad you found this great forum!

Here is my story...it is fairly long, but I'm sure you may be able to relate and also find some valuable information that you are seeking from your current questions. http://www.perskyfarms.com/phpBB2/viewtopic.php?t=21173

Second there is a Stage 1 eating plan http://www.perskyfarms.com/phpBB2/viewtopic.php?t=22328 that I highly recommend you ponder and see if you can come up with a few safe foods to begin this journey with.

As with everyone here that gets diagnosed with MC this journey stays with us, but we do get better, we don't get a cure from it, we learn to not let it control our life

The first couple of things you will want to do is find your D levels and if they are not around 50 or better this is priority, at the same time absorbing internally or externally Elemental Magnesium preferably in the glycinate form to the tune of at least 500 or better based on your degree of healing needs....while I was taking 10,000 iu VitD3 I also made sure I was getting near 800mg Magnesium mostly external with some internal because the D and Mag work in tandem and will also help the calcium enter the bones and tissues where it is supposed to go and not excreted out the kidneys

I've learned alot at this forum and am 2 years into healing, and I still have my moments!
Hugs
Erica

moquack · Post by **moquack** » Fri Jun 09, 2017 3:16 pm

Thanks for your response. My vitamin D level was 32.5 and the doctor was fine with that. I haven't had magnesium checked. Did you get your magnesium checked before starting a supplement?

Erica P-G · Post by **Erica P-G** » Fri Jun 09, 2017 3:33 pm

Hi Moquack,

No, I did not check my Magnesium. Most everyone is Magnesium deficient, our bodies don't make it so we have to get it thru food (maybe) or supplementation period.

Your D level isn't the greatest, regardless of what the Dr. feels, in order to help you to heal your gut. My VitD was at a 45 and I didn't see healing until I changed my diet, upped my VitD3 by taking 10,000 iu and also taking 600-800 mg Elemental Magnesium applying externally and taking internally to reach that amount during a 12 hour period. I am now at a decent 83 for VitD level and I still don't care to know my Mag level because I know as long as I am still reacting, or having bodily issues with pain, brain fog, palpitations or migraine, I will always need Magnesium plus maintaining my VitD level.

The irony here is initially we can't see the healing....we have to go on the laurels of others that have been there done that and then pretty soon it starts happening to us, we begin to heal and we watch it evolve ever so slowly. There were times I wasn't sure anything was working.

I can attest the healing does work...as long as we put our own dedication into it.

Janie · Post by **Janie** » Sat Jun 10, 2017 10:38 am

I am a retired nurse. You are going to have to give up the idea that all Doctors are gods. I am fairly new at this but it might have been the Nsaids that caused the MC but diet can put into remission. It took me quite awhile to go in remission with diet only. I was offered the meds, would have used them but I have osteoporosis.
Read as much as you can on this site and take a deep breath and I don't rely too much on my Doctors though my new GI Doc that I saw in Dec. said at least gluten and dairy free. And Budesonide is 6 mos. at least, with a long slow withdrawal. I followed the advice on this forum and increased my Magnesium to keep it in the range and Vit D to keep it above 60. I was strict with the diet recommendations too.

Janie · Post by **Janie** » Sat Jun 10, 2017 10:50 am

Also Magnesium blood draws will show a normal range because your body is always adjusting to allow circulating Mag. It takes out of your muscles etc to circulate it. When the stores are used up then it will show a lower number. Gabes and Tex along with others can direct you to the sites and they give good advice on Magnesium. Erica too is spot on.