My Body Had Other Plans For Me

My Name is Sabine

Tears are streaming down my Face and I am trembling with emotions of fear and anger as I am typing this.
I’ve never have openly discussed my illness the big” UC” openly with anyone except my Husband of 20 years and my Doctors.
Am I alone in feeling ashamed and embarrassed?  I have spent 6 years quietly screaming on the inside.

My Ulcerative Colitis Experience:

I have been in this dysfunctional relationship with my Colon for the past 6 years.  I’ve always been a health-nut.  Jogging , yoga and weight lifting, a full on veggie-head.   Nothing was going in to my stomach that was not preservative free, organic, and Hormone, and gluten-free. This diet may sound familiar….yes I was actually on a form of the SCD and a NON-smoker.

To make a long story short, I like others fell ill after a Trip ,for me ,to the Caribbean, we were going on 2-3 trips per year.  At first I figured it was the terrible travelers sickness,except it just would not stop ,until one morning a was passing blood.  I was put on 2 types of Antibiotics, and a liquid diet for 2 weeks, my symptoms vanished i went on with life a normal fast forward 5 years, I am in the best shape of my life turning 40 , and one day at work i am experiencing the most severe stomach-pain to the point of almost passing out,after collecting myself and dragging my self to the washroom I had a bowel movement of at least 3cups of pure blood rushing out of me.

I was so scarred I was sure I was going to Die right there.
I was put through another round of medications , and a sigmoid scope the following day, and was diagnosed with mild proctitis.  I was send to a GI specialist, he unfortunately was in the biz for all the wrong reasons , he basically told me to suck it up spending the next 4 weeks in Bed crying in pain being only on Antibiotics, and my symptoms were getting worse , even water would be to painful to take in,i finally broke down and had my Husband take me to the Hospital.
By then I was down to 105 pounds at 5’7 and completely run down . i never seen my Husband so frightened.  My luck ,my horrible Gi Doc was the one on call, he basicallyy told my Husband to take me home and make me eat something it was all in my head, i was only scarred of the blood and making it bigger then it is.  My Husband knows me to be far from that type of personality.

My Husband insisted that I get admitted and refused to take me home, just as the Nurse was getting ready to put in the IV I had a Seizure, and then a Stroke
thank Good my Husband stood up for me ,things could have turned out quit different for me, I had every test under sun,and was prepped for a Colonoscopy, when my GI Doc came to give me the results, he was pale and somewhat worried what choice words my Husband may have for him.
Well I was diagnosed wit Pan colitis not an inch left of my colon not chewed up by UC.  My bloodwork came back, and the Nurse asked me how i had the strength to even sit up, i had 3 Blodd transfusions and a massive Sterroid attack on my Body , i left the Hospital 3 weeks later wearing my Husbands Sweatpants because i gained 60 pounds,i could not sitt up straight because of all the fluid build up in my Trunk,i felt like a Kilbassa ready to bust LOL
i could not believe the image in the mirror,i had gone from Fittness model shape and ripped Abs,to feeling like 90 in a short period of time.

I felt like my Body betrayed me.

I have lost the 60 pounds.   I have recoverd completley from that nasty Stroke.  I do have a severe case of UC.  I am in worse shape in the Winter for some reason. My Doc is constantly trying to Bully me into Surgery, but I am not there yet . I have been back in the hospital a couple more times over the years, i need Blood transfusions at least once a year, and i am on Iron infusions. whenn i take higher doses of Sterroids during a flairup, i will take a Forusomide Water pill every other day, it keeps the watergain down.i am on Pension i had to quitt my job, it is hard when you need the restroom every 30 min, and i am up all night.

I have cravings for food I never was eating before, and can’t stand to look at stuff I loved.  I noticed I have a sweet tooth I never had before.
Some days I feel always hungry, and some I’m to nausiated to eat, enybody else have that?

Has anyone else had the problem with Hairloss after high doses of prednisone?

I have come across a study from the University of Toronto, taking 4x the recommended dose of Folic acid per day greatly reduced the occurrence of colon cancer caused by Ulcerative Colitis. As well as 600mg of coated aspirin per day cut the risk by 60 percent.
I send of you out there my warmest regards, and hope that all of you find the strength every day to demand your inner Courage to come out to play.

-Sabine

My Colitis Medications:

i am on 30 mg of prednisone tapering
iron infusion 1 per week for 2 more session then 1 per month
I tried Imuran , made me sick
I tried Asacol , bleeding got worse

have not tried Remicade (just to worried about the side effects, and it seems to loose effect anyway)

 

Submitted by “Not Done Yet” aka Sabine, in the Colitis Venting Area