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.
- 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.
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.