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24 Questions from Ness – Diagnosed with UC December 16, 2014

Intro:

I am a single mother and I just turned 25. I was born with congenital hypothyroidism and I was diagnosed with Ulcerative Colitis yesterday (December 16,2014) actually , and I have a tonne of things and un-answered questions running through my mind. Figured this was the best place to start.

I am currently in school (getting sick has kind of put a break on it a bit) working towards my bachelors in nutrition and food. The end goal is a registered dietician. At the same time I have taken up becoming a personal trainer while I complete my schooling, therefore I can support my son and I during the course of it.

Some more about Ness:

I’m from Toronto, Ontario, Canada. I’m quite active. Always enjoyed; running, swimming, ballet, rock climbing, yoga and I just picked up martial arts about a month ago after having a serious problem with my thyroid supplements which was helping with weight loss and stress a lot.

Current Colitis Symptoms:

About 4 weeks ago it started with the urgent need to go to the bathroom, along with mucus, and blood. Two weeks ago it got really bad, when a fever started and it was constant bouts of watery BM’s, gas, tonnes of blood and pain in my left, lower and right abdominal areas, which would shot up to my right ribcage. and these lasted all day and night. As of now, after yesterdays colonoscopy/diagnosis, minimal blood, minimal cramping still can’t stray away from the bathroom too far, and headache (not sure if this is a symptom or broken sleep)

Super New to Ulcerative Colitis:

Well, the doctor really didn’t say much so, lets start there? (sorry if this is really long, but I am extremely confused and upset and rather irritated physically and emotionally)

I went in for my first colonoscopy to see why parts of me that shouldn’t be bleeding are, the prep sucked..a lot. Never met this doctor before, waited an hour and a half on a cot in a hallway waiting to get sedated and have a camera put up my rectum. The nurse was nice. 4 minute introduction to Dr’s and nurses, and they knock me out. Next thing I know I’m getting woken up in a new ward being asked if I work in a hospital or medical clinic (no I don’t.) Nurse (nice one) looks like she has seen a ghost and another nurse is telling people “this area in now in quarentine (C.difficile that I have some how contracted) and I’m still really out of it. My parents showed up, we waited for the doctor for about 20 minutes. He finally graces us with his presence, he mentiones the C. Difficile, said colitis then he wrote the name (ulcerative colitis) on a piece of paper when my mom asked for more information. Checked my stomach, then told us his secretary woul d contact me, gave me discharge papers and then he was gone, in fairness I was getting my IV taken out and I was a bit disorientated so I missed a bit of the conversation on meds.

I got home with my parents ( Son and I moved in after the separation.) and just passed out and been having a heck of a time sleeping since and not stressing over whatever I have now.

My Main Concerns:

  1. The horror stories about it taking years to get a handle on it is probably what concerns me the most
  2. will my son get it
  3. I feel like I’m letting him down
  4. Can I still become a personal trainer?
  5. Can I go back to sports ideally the martial arts or will that be too hard on me? (I’m not saying right away)
  6. What do I eat now? (this one really confuses me)
  7. meal replacement shakes? No? Yes?
  8. why are the meds so ******* expensive?
  9. did anyone else cry when they found out?
  10. how did you come to terms with it?
  11. am I now going to be single forever?
  12. how often are the colonoscopies
    • do I get drugged every time?
  13. is it the same symptoms every time there is a flare, or is it like a bowel moment wheel of fortune?
  14. pain killers. can I use?
  15. anti-depressants, can I use?
  16. if it lasts longer then a few months should I go on disability
  17. will i have to get surgery down the line?
  18. wouldn’t it be better to do it now if that’s the case?
  19. how often can medication change?
  20. do I stay on medication, more so the suppositories for life?
  21. should I get a second opinion?
  22. did your doctor leave you in limbo with information?
  23. should I be looking for another doctor?
  24. am i overreacting?

I’m a little pissed off with this…

I think that’s it for now…..

The doctor started me on 4 mezavant horse pills in the morning and salofalk at night. I’m just about to take my first doses of that so I honestly have no idea what to expect.

My family has been treating it calmly and helping with my son. My dad had to ask his gastro (we have different diseases) what colitis was so I know my surgeon/self-proclaimed doctor obviously did not explain it well. For obvious reasons he(dads gastro) can’t give me advice without seeing me or knowing full details.

Honestly, I just want some piece of mind until January (when my scheduled appointment is with doctor that should have explained himself a little better) or I can get an appointment with another gastro. Just something.

written by Ness

submitted in the colitis venting area