Hello my name is Mylène Savaria and I am 41 years old. I live in Canada and I am a social service worker and on the side I live my passion and teach zumba. I have 2 grown kids and a wonderful husband. I am a passionate person that loves life even when at times it is quite challenging but we live and we learn. I was diagnosed with UC in 2007. I had symptoms before that time but they went away. In 2007 it was a rough year. I got the news of my DX of UC while I was at the hospital for something else. I was at the restaurant with my best friend when I started convulsions. I ended up having a cerebral thrombosis blood clot to the brain caused by the pill (oral contraceptive) So double whammy ! I went from being healthy to having two major health issues. The blood clot is still there but at least all is stable in that department. As for the UC it gives me soooo much problems. Long flare ups and frustration in trying to get in remission.
Right now I would say that I am better than I have been in a long time. After being hospitalized for a couple of days on high dose of prednisone which I am now tapering off (went from 100mg to 45mg so far) I have now started the SCD Diet 2 weeks ago and I would believe that is what is making me better as I have been on prednisone before and it did not help as much as I am now. I now go mostly in the morning, hardly no more blood and still trying to clear the mucus. Normal pooh is starting to happen again Yeah ! Before I use to go 25 to 30 times a day and I still managed to work and teach zumba on a full time basis ! I am now on a short sick leave which gives me time to start this diet.The longest I have had peace was 6 months in the last 5 years. Its not easy and I am surprised at how we accept things and find that we tolerate more than we should.
Right now I am faced with a big decision….I am still on the prednisone and respecting the SCD diet 100%. My Dr now wants me on Humira. Remicade failed to help me. It did for the first injection than nothing. According to the Dr its Humira or surgery. I am not feeling either one ! I want to give this diet a chance as I believe in it. My husband and some friends believe I should do both but how am I suppose to know what works if I am on prednisone, humira and a diet ????? I want to listen to my body and my body and soul but I do not have the approval of my own medical team. I want to do what is best for me but I am getting lost in too much info or opinions from every one. Will Humira help or just set me back ? Humira is in the same family as Remicade so why would it work more? And from what I see everything stops working eventually…I would wish to have the support of my Dr but he brushed me off when I had asked him at the beginning if what I ate could have an impact. So telling him now about the diet I know he wont be in agreement. Here in Canada I cant ‘fire’ my Dr we need referrals from a GP and it is very hard to get second opinions. I do not want to be completely on my own without a medical support. I am scared. I do have a great support system and people that love me and for that I am grateful but they look at me not knowing what to say or do as they can never know what it is like and I end up wanting to reassure them meanwhile I feel alone in the hard decisions.
Where I’d like to be in 1 year:
In 1 year I would like to be without medication while continuing my SCD lifestyle. I would like to be able to read my body and all the signs that it is giving me to prevent flare ups and manage a healthy way of living symptom free.
I have tried all the possible drugs I think..Mezavant…salofalk…immunosupressants (which got me sooooo sick) Remicade that also did not work…and now faced with a new drug and dilemma…to take or not Humira while doing the SCD diet.
written by Mylene
submitted in the colitis venting area