The short version

[darlene]

hi all my names darlene im 30yrs old and i was diagnosed with crohns in 2002 and boy oh boy what hell i went through, i thought i was dying the doctors just thought i had gastro (what dick heads) so they just kept giving me maxalon injections i couldnt stop throwing up and it would go from couldnt stop going to the toilet to not been able to go wich is much scarier this went on for months and month to it got that bad i couldnt take any more and was taken to the hospital i thought i was going to die for real!! i lost over 30kg in the first few months of my first flar up...after years of taking prednisalone and anti biotics and azathioprine and being still soooo sick for yrs the meds wernt working for me life was hell i couldnt bring myself 2 get out off bed most days for near 10yrs i was in hospital more then a dozen times... i had surgery on the 24th of april and i dont know myself its kinda weird not being in pain..even though i cant stop going to the toilet and it like water and makes me tender by lunch time as my bowel wakes me up through out the nite but at the end of the day ide much rather be like this than how i was b4 surgery,i was so terrified of surgery as i have never had surgery b4 but it went all well and im so much happier for it now i have a awesome dr looking after me and so greatful 2 have a dr know what they are talking about thats the short version off my storey off this horrible disease!!

 

[David]

Hi Darlene and welcome to the forum!

Wow, I'm so sorry to hear you went through so many years of suffering, you poor thing That's great that the surgery went well though! Did they remove parts of your terminal ileum, ileocecal valve, and cecum?

If you're having a lot of chronic diarrhea and you had the surgery above, I suggest you read this entire thread about psyllium husks. A lot of people here have used it with great success. If you think it might be in your interest, it would certainly be worth discussing with your doctor.

Again, welcome

 

[darlene]

hi david thank you i had 40cm off my small bowel removed and parts off the small bowel was stuck to parts of the large bowel, my specialist has givin me cholestyramine sachets i havent yet had then as im taking endone for my teeth wich are getting removed 2morro:thumright: so i will be starting them in a week, i also was on infliximab for about a year and a half before my surgery wich would only do good for a couple off weeks then i would get so sick all over again and constantlly getting viruses

 

[sparkles]

welcome to the forum! sounds like a classic case of misdiagnosis from the doctors at the beginning... im sorry to hear of all the operations and treatments you went through, it can be horrible
goodluck in the future! i hope this forum can help you go through the difficulties of crohns!

 

[jvc7477]

Hi Darlene. I too was misdiagnosed and was treated for an ulcer for 2 years and of course that did nothing for the Crohn's

 

[David]

Hi Darlene,

If you're still getting viruses, actually, no matter what, I'd ask them to test your vitamin D levels. People with Crohn's are commonly deficient and a high vitamin D level can definitely help improve the immune system.

With your surgery, I'd have them check vitamin B12 as well.

 

[darlene]

hey guys i think this is great its so good to talk to people who know what this horrible disease is like,thank you sparkles and this whole experience has made me lose faith in gp's as soon as i went to the hospital they found out i had crohns disease straight away through doing some blood tests ive been lucky enough to never had a colonoscpy just had plenty off mri's and ct scans and the infliximab is a horrible treatment it didnt do a thing for me but made me even more sick the first couple off wks it would be great but after that i would be bed ridden from the viruses i would catch was very intense! thank you david i will deffantlly give that a go and start having vitamin B12 shots again and start takin vitamin D tablets, thank you for the great advise

 

[David]

Get tested before you do so. That way you can make sure you are indeed deficient and if you are, track your levels over time and make sure your dose is sufficient.