Year out from surgery...need advice

[k.Babe]

Ok so after a year and a half of Horrible diarrhea and pain a doctor finally decided to do a ct scan and found that i have crohns disease.....with 6 abcesses. Had an illiocolectomy a year ago. I am only 24 and that was my first flare so my doctor didnt put me on any maintenance drugs. The symptoms returned a few months back. Finally did a colonoscopy and found out it is back. I have a scricture on the "new" end of my small intestine and inflammitory changes in my lower colon now as well. My doctor isnt entirely sure what to do about my new flare and how to handle it so as of yet i am still not on any medications.
Here's my problem: like i said im only 24 and i dont have a clue what to do. I feel like my life has gone to hell in the last two years. I realize that smoking has probably had a huge part of why it came back but i dont know what to do.
Before my surgery i was on 50mg prednisone and mesalamine. I ended up not having enough money to continue the mesalamine but it seemed as if it didnt make a difference when i got off of it.
It now seems as if i cant eat a single thing without pain and now nausea. i just dont know what to do. any advice or even personal stories would be great.....:sign0085:

 

[DustyKat]

Hi k.Babe and :welcome:

My goodness, you have been through the wringer...:hug:

First up you need to get the flare under control and for most that means getting back onto the steroids again and perhaps a course of Flagyl. You are right, smoking is not helpful when it comes to Crohn's but quitting that is easier said than done and I don't imagine I need to tell you that!

Diet can certainly play a role in alleviating your symptoms when flaring and many people go to low fibre diet at these times so have a good look through the Diet, Supplement and Exercise forum...

http://www.crohnsforum.com/forumdisplay.php?f=17&order=desc&page=6

Also have a look at the Enteral Nutrition (EN) forum...

http://www.crohnsforum.com/forumdisplay.php?f=161

Both of my children have had the same surgery as you and my daughter also went undiagnosed for 18 months before having the emergency that diagnosed her. However both of them have been on maintenance medication since their surgeries and my daughter has now been in remission for 5 and 1/2 years and my son has been in remission since his surgery in April. Is it because of the medication? Well I don't know but I'm too gun shy to change anything! :lol: Especially after seeing what my daughter went through pre diagnosis.

As I said, the most important thing right now is to get the flare under control. Perhaps the Mesalamine wasn't strong enough the first time round, well considering you had six abscesses it definitely wasn't strong enough to keep things contained. You may need to step up in the type of drugs you need...immunosuppressives or biologics. I assume you are in the US? I say this because you have said you couldn't afford the drugs, has this changed or is the cost of treatment still going to be an issue?

Good luck and welcome aboard!

Dusty. xxx

 

[k.Babe]

I live in the us I was on a different prescroption plan last year that pretty much paid for nothing it just made it so bills have a cap. Right now anything that normal insurance will cover is relatively cheap for me. I'm trying to adjust my diet but I'm not kidding I can't find any food that doesn't hurt. I'm curfrently trying an nutritional supplement drink just so I don't lose too much weight. I'm actually going through personal issues as well with the disolving of my marriage and taking care of two toddlers. I really don't want to get on prednisone again just because it made me really fat.

 

[jlanier]

Im kind of like you with the mesalamine, that didnt begin to do anything for my crohns. I dont have insurance right now, so the price of medications is something that i am very much aware of. Im on azathrioprine, and that is something that is stronger than the mesalamine, plus it is relatively affordable even without insurance. I am also on prednisone, which i understand the concerns about the side effects, however it is really affordable, and works.