jon71's picture

jon71

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my health

Dear Community.

         I didn't want to put this in the main forum. I'm not sure why but mostly I didn't think it was big enough to justify it. I hope my friends read this but everyone is welcome to. In a few hours I have have my small bowel examine. I'm not worried about the procedure, it's non invasive so that's a snap. I'm a bit worried about what they'll find. There could be scarring or who knows what. I probably should say I have Chron's disease which is chronic and gastro-intestinal in nature. Also the medicine I was taking is no longer covered by my insurance. That's private insurance for you and why I can't wait to have a govt. option. I was given a prescription for a medicine that's affordable but that the doctor didn't think was really doing any good for me. I had taken it for years until he was convinced it wasn't doing the job. I don't know how long I'll be on it because the results of my exam could change things in any number of ways. I should also say recently my dad was in the hospital because of his ulcerative colitis which he and my sister has. Normally Chrons would be considered a more severe version of the same disease. Colitis affects the colon while Chrons hits up to the entire G.I. tract. Even so I'm the least symptomatic of the three of us, so far at least. When dad was in the hospital I wondered if I was looking at my future. Will that future include having bits of my gastro-intestinal system removed over the years as it becomes too diseased? What kind of medicine will I be on? My sister takes prednizone and it gave her really bad acne, which she didn't have as a teen just due to good luck. I've taken it on short term bases before and it wreacked havok on my ability to sleep. My dad has that problem. 2 to 4 hours a night is typical for him. I don't know how someone can live that way. It makes him miserable. My sister doesn't have trouble with sleep by the way, just acne from that. She does have pain from the colitis itself though. I'm symptom free most of the time but when I have an "episode" it feels like an awful 24 hour stomach virus. It passes quickly but for a few hours it's misery.

      Anyway I know I rambled but I wanted to share this with my friends and ask for prayer. The procedure is only two hours away but it'll be days before I have the results (I guess). I wish everyone well and thank you in advance.

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crazyheart's picture

crazyheart

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Jon, I will keep you in my

Jon, I will keep you in my thoughts and prayers.

jon71's picture

jon71

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Thank you. The procedure

Thank you. The procedure wasn't bad. I drank some chalky liquid and then they waited for it to hit my small bowel and then took photos of it. Some kind of imaging, I'm not sure. It'll be a few days before I find out the results, probably Mon. or Tue. I'll update then.

pommum's picture

pommum

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Hi Jon - my son has

Hi Jon - my son has ulcerative colitis and I know these disesases can be nasty. I have RA ,so I know all about drug side affects and the fatigue that often goes with these  autoimmune conditions. What drugs are you taking? Please let us know the results.  pm

jon71's picture

jon71

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I was on sulfasalizin for

I was on sulfasalizin for years. The doctor didn't believe it was doing much so he swithced me to apriso. I think I got the name right. I was on that for three months until my insurance decided to save themselves some money by no longer covering it (can't wait until we have a govt. option here). So for now it's back to Sulfa but that might change depending on test results.

Northwind's picture

Northwind

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Hi Jon, How are things going?

Hi Jon, How are things going? I just looked at this blog.

 

I hope all is well with you.

 

Do take care.

 

Northwind

ninjafaery's picture

ninjafaery

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I just found this too, Jon. 

I just found this too, Jon.  Hope you're doing ok and on the mend.  What a worry and challenge for you.  Sending lots of good wishes your way.

spiritbear's picture

spiritbear

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From one Crohn's patient to

From one Crohn's patient to another - may your stools be formed, may the cramps desist and may there always be a washroom with toilet paper around the next corner.

pommum's picture

pommum

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Hi guys ... Jon and

Hi guys ... Jon and Spiritbear .... just wondering how you guys are doing? My son has what we thought was UC (his biopsies have always been indeterminate) and has been in remission for several years but recently went through a very stressful time and is now in a flare. His old GI has since retired but he is pleased with his new specialist, but  he is now  older,  has a job, is married and is a father, so he has more concerned about his health And also,once again they are questioning if it is Crohn's and not UC. He is for a scope next week and once again on prednisone. Just wondering how you are doing and what is working for you?

jon71's picture

jon71

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They could tell if it was

They could tell if it was U.C. or Chrons with me for years. I think it was about my third scope before they made a determination. Is this his first scope. If so he needs to know that the procedure itself is no big deal but prepping for it the day before is miserable. He has to stay home and close to a restroom that day. Work is out of the question. The day of the procedure he'll be fine as soon as he sleeps off any residual anesthesia they give him.

As for what is working for me? I don't know yet. Hopefully this new steroid works better but it's too soon to tell. Best wishes.

pommum's picture

pommum

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Jon, he was very ill in high

Jon, he was very ill in high school from grade 9 on. The only year he really enjoyed was grade 12 and then became very ill that summer and was very close to having a colectomy. He has had many scopes, and like you dreads the preparation. He also said a scope when you are feeling well is much easier than when you are in a flare and inflamed. He struggled through university went into remission in graduate school  and I think tried to forget about the whole thing so this has been difficult for him and his wife has not known him ill. With his new specialist he will be having regular check ups which he knew he should be starting to have and told his treatment will now be life long.  This is a nasty disease ... something people don't want to talk about and especially difficult and embarrassing for a teenager. By the way, the genes for UC and Crohn's apparently are totally different so I find the diagnosis in your family interesting. Hopefully, someday soon someone will find the trigger for all the inflammatory disorders. I am on an IV biologic for my RA. I often chat with RA sufferers from the US and life can be very difficult without health insurance if you suffer from a chronic disease. 

Take care ... thoughts and prayers are with you!