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21 years later and still none the wiser...

The story of my crohn's is long and depressing...so here's a bullet point account.
- Toxic Mega Colon age 7, diagnosis of Crohn's, 3 months in hospital where I suffered multiple seizures and I had an emergency, permanent illeostomy. Weeks of rehabilitation learning how to talk again.
-6 weeks elemental diet through tube feeding age 14 prior to having 3 strictures removed in surgery.
-8 years of AZA before being taken of it due to liver damage.
-Rectal stump removed aged 21 and cyst drained.
-Small bowel resection aged 25 due to suspected fistula.
-2 years infliximab

-5 months ago i attended a routine check up with my consultant who is not a gastro specialist.
-I was seen by a registrer, I was NOT having Crohn's symptoms but the doctor felt I should be on managing medication and gave me a AZA dose of 100mg ( i was 43kilos at the time)
- 2 weeks into the course i got severe diaorea, bloating and discomfort.
I told them it was the medication but they didn't believe me and gave me steroids to take as well as the AZA, after 8 weeks on this combo i dropped 3 kilos, my heart rate was 143, i couldn't breath, i had back pain, bloating, extreme fatigue. I moved into my mums because i didn't think i'd make it through the night. I was finally admitted to hospital were they had to replace my electrolites, potassium, magnesium and sodium. New doctor wants to take liberates with my bowel and resect more but I already have short bowel syndrome and i am convinced that my new problems are pancreas related.

Lady Organic

Staff member
Hi so sorry about your history. How come your dr put you back on AZA after having suffered from it in the past?

How come you dont have a GI specialist? Try to find one asap for a optimal care of your digestive track. wishing you well.
Justanothercp i asked to be transferred while in hospital and the team got really defensive with me. I told them the AZA story and also that I had seen my consultant 1 week before being admitted to hospital and he didn't even bother taking my bloods. They all take it really personal in my hospital, but i don't want get anyone in trouble I just want them to make me better whether it was their bad decisions got me here or not. I asked one of them a simple question about how a medication works and when he couldn't answer he got really annoyed and more or less shouted "why do you want to know?" I might ask to move hospitals altogether. Thanks for your concern :) I feel like my family don't really take it seriously anymore. I've never had trouble coping before but recently I feel I might have post traumatic stress from my last surgery which I took a long time to recover from. Fed up, don't want to fight anymore.

Lady Organic

Staff member
not answering your basic question is complete lack of respect and lack of professionalism. It is a right we have to be answered from doctors. i really encourage you to change your medical team. There are some teams who are truly nice and generous. You got to find one for yourself. It can make all the difference in the world on our perception of disease and how to deal with it when we are sick. Interpersonal or value conflict with medical team is highly stressful and anti-therapeutic imo, I have been there once. we will most likely be in relation with these people for the rest of our lives, its important to feel confident and good around our caregivers. good luck.
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