34 years coping with crohns

[acarvic1]

Hi i have had crohns for 34 yrs and i am now facing the prospect of an ileostomy i have been on humira for the past 18 months coupled with prednisolone in fact i have taken pred daily for the past 20 yrs i have had one resection when i was in my early 20s i also have suffered with associated pyroderma gangeranosa on both legs which took ages to heal the only other thing is i have become diabetic which the consultant reckons it is due to steroid use . Yes i do get very down but i am still here people look at me and think there is nothing wrong how i would like them to monitor my existance over a week . Andy

 

[had_enough1980uk]

Sounds hard mate :-( Have you got people to support you?

This is a really friendly forum, you will get a lot of understanding ears here.

 

[Angrybird]

Hello Andy and welcome the forum.

I am sorry to hear that you are facing surgery again and have had to face additional issues down to the meds, out of interest why have the docs had you on the Pred for so long? Do you know if the docs have ever done any checks on your vitamin levels? I have had an op myself but it did not end with a stoma so I could not advise on this however we do have a sub forum that is certainly worth checking out if you did want to have a chat with folks about what to expect: http://www.crohnsforum.com/forumdisplay.php?f=46.

Please keep us updated on how you get on.

AB
xx

 

[David]

Hi there and welcome to the community. I'm sorry to hear you're facing an ileostomy but sometimes such surgery is for the best.

What dosage of prednisone have you been on all this time?

All my best to you.

 

[acarvic1]

hello i have been on 20mg prednisolone daily sometimes having to increase to 30 during flare ups i am also on b12 injections every 3 months i believe i have tried all treatments avaliable Andy

 

[David]

Goodness. Have they monitored your bone density with that dose for that duration?

 

[acarvic1]

yes i have had my bone density monitored i believe the steroids have caused untold damage i suffer from osteoporosis and associated bone trouble. The trouble i have is that my mum had crohn's disease and she passed away this year through the crohn's the doctor wants me to go into the same ward that my mum was in to have my surgery . Naturally i am wery reluctant to go into this ward . As there is no magic cure i need to wait and see what transpires Andy

 

[LisaL]

I can certainly understand why you would be reluctant to go to the same ward where your mum passed away. Is there any other choice. Surgery can be hard enough to deal with, why add all those memories to it.

20 years of Prednisone seems like a very long time. What was your doctors rationale for such a long course of treatment at such a high dose. Are you taking anything to address the loss of bone density? Are you now also insulin dependent?

I hope that you feel better soon.
-Lisa

 

[acarvic1]

At times i think the consultants are there to keep you ticking over as the prednisilone was helping and i was able to work they left the steroid usage alone .i am type 2 diabetic tablets only i am now unable to work i do take weekly tablet for my bones, Andy

 

[Dukeis]

Welcome to the forum. 34 years wow that's a long time. What is more shocking is all those years on steroids. This is a friendly forum and you can come here and ask pretty much anything and someone here can answer it.

 

[acarvic1]

Nice to know i have now found a forum where people are understanding and are able to re assure you if you have any issues regarding your disease.i do appreciate having some support Andy