My UC Journey & Where I Am Now

Introduction:

I have been flaring since 2009 but I refused medications and try homeopath medications but in 2011 I was in a full flare lost 20killos in 2 weeks and rushed into hospital I was so sick I stopped eating and nearly died, my CPR was over 300 I was malnourished iron deficient and severally dehydrated. where am I now I say I am must likely 70% to 85% better since my sever flare.

Some more about me:

I love gardening and I enjoyed going to the gym; power walking and was starting to get into cross fit training (my level of fitness) I push myself to hard at times and before I ended up in hospital I still pushed myself to go to the gym even so my Personnel Trainer tried to slow me down. sadly those days are over as I believe taking prednisone for almost 2 years straight did my back in and fractured some things in my back so now can now longer do Cross fit / gym work. I now do Pilates but crave being active again.

My family and friends have always told me although I have been thrown some hard times I am always happy and laughing but that I had always put myself last and I put others first. Now I have started to change and slowly putting myself first.

I love quoting quotes and this quote is one of my favorites – It takes a long time to grow young by Pablo Picasso

Symptoms:

I still have urgency still go up to 5 times a day on a good day on a bad day up to 10 times a day but this is better than going 30 times when I was severally flaring. I still get bloated after eating and scared some days to even eat. I still have occasional bleeding, mucus, and now just been diagnosed with bilateral inflammatory sacroiliitis caused by my Ulcerative Colitis so need to see a rheumatologist now for treatment. I also have arthritic pain and this is me saying I am feeling better.

My Ulcerative Colitis Journey

So I still have some bad days and struggle with my UC every day although I know I am better than when I was severally flaring but I just want to be normal what ever normal is but I feel that I have been sick for so long that this has become my new normal. I think nearly dying I now try and live each day as though it is my last I don’t stress over the small stuff any more. I have always been carefree person but I started to have a lot of stress in my life prior to being sick and would worry about the smallest things my anxiety was at the max and I became severely depressed then I got very sick. I think nearly dying with UC made me stop and smell the roses and go back to being who I was.

Also before I was diagnosed my family just thought I was sometimes just being lazy when my house was not cleaned or I would prefer take out then cook a meal, but now they support me and understand why I was the way I was before diagnose and still am some days. these days some of them also come to my medical appointments and give me the support I need I hear from my family more they contact me more often then they used to I love that a sickness that nearly took my life has brought us even closer.

I do have a fear that I may end up with a colectomy and have to have a bag and if I do have this operation that I am going to be told I actually have Crohn’s disease and can not have surgery for a jpouch so I be stuck with a bag.

Medications and Supplements:

I loved prednisone and hydrocortisone and hate them at the same time yes it help save my life but I couldn’t get of it. but now I have changed my GI who wanted me to have a colectomy and now go to the centre of digestive diseases where Dr Borody works I had a colonscopy and tested for Mycobacterium avium subspecies paratuberculosis (MAP) and told I have it so I know take Pyrazinamide, flaygyl, Rifabutin, Vancomycin I have been on methotrexate injections for over a year as well also since being on all these antibiotics I can happily say after 2 years being on prednisone I have finally stoped taking them.

I am hoping that I can have Fecal Microbiota Transplantation so I can go into remission.
I also want to ask if I can be put on humira on compassionate grounds or try LDN

written by Anne

submitted in the colitis venting area




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iHaveUC.com is located in Menlo Park, California - United States 94025