Hi my name is latoya i have had Crohn's disease for 13 years now i have been on prednisone,entorcort,pentasa,flagyl,cipro,asacol etc.i am now on remicade and 100mg of imuran and it has taken a tole on my mind body and spirit the remicade i have been on for 7yrs and it had stopped showing up in my system so my dr decided to try imuran in conjunction with the remicade to boost it to work now i am truly suffering and at a loss my immune system was already at risk due to childhood TB which i took riframprin for 6mths before starting the remicade now i have infections coming up on the majority of my body big painful lumps filled with pus skin breaking down that hurts also a whole lit of weight gain even though i can barely eat anything without my belly hurting i have had 25 surgeries already small bowel resections fistula repairs hernia removals a loop ileostomy and a reversal my rectal muscles dont work anymore now i lay in a hospital bed every day except when i go to the dr due to weakness in my limbs because im not getting any nutrients into my body i have to have 2 iron infusions every 6 mths i have to take vitamin d for my deficiency and magnesium and pottasium all my levels are 13 and below i truly dont know what to do anymore my life has resorted to a hospital bed and a bedside commode for the past 2yrs and im only 43yrs old with 3 sons and 2 grandbabies and no life i feel like im laying still and the world is going by around me and it hurts there is no support groups close to my home and family doesnt try to understand they just say u r not eating healthy and it makes me wanna scream how does everyone ekse cope my stomach cant even handle a glass of water it hurts going down but i have gained 100pds from eating barely any food at all i know my appetite will pick back up once i get my pain meds back but right now i just cant cope i am just tired everyday with aching bones and a hurting stomach and very painful lumps and sores this is my life they already labeled me a Catch-22
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My daily life with Severe Crohn's Disease
- Thread starter Tanqueray3953
- Start date
Hello Latoya
You certainly have a great burden of illness to contend with and you have my greatest sympathy.
This is such a difficult situation with Crohns and it has hit you really hard.
Are you able to tolerate a liquid diet either self made or purchased..things like Boost or
Ensure ..anything you can tolerate....sometimes I take the diabetic meal replacement
Glucerna ..which I manage better than any of the others ,only strawberry flavour.
This usually gets me back to eating a light diet.soups etc.
Has your doctor investigated the w eight gain...some medications cause this...also it's an idea to check thyroid function.
Steroids can cause major weight gain which usually goes when the steroid is discontinued.
You will never be alone when you visit the forum....there is so much information here and you will find other people in a similar situation to yourself.,and make new friends who will be there for you.
Hope you will soon start to feel better
Hugs and best wishes
Trysha
You certainly have a great burden of illness to contend with and you have my greatest sympathy.
This is such a difficult situation with Crohns and it has hit you really hard.
Are you able to tolerate a liquid diet either self made or purchased..things like Boost or
Ensure ..anything you can tolerate....sometimes I take the diabetic meal replacement
Glucerna ..which I manage better than any of the others ,only strawberry flavour.
This usually gets me back to eating a light diet.soups etc.
Has your doctor investigated the w eight gain...some medications cause this...also it's an idea to check thyroid function.
Steroids can cause major weight gain which usually goes when the steroid is discontinued.
You will never be alone when you visit the forum....there is so much information here and you will find other people in a similar situation to yourself.,and make new friends who will be there for you.
Hope you will soon start to feel better
Hugs and best wishes
Trysha