My Story

[kayvank]

Hey everyone,

Name is Kayvan. I have been recently diagnosed with Crohns back in March of this year. I started having stomach pains In January, but didn't get a colonoscopy until March; which confirmed Crohns. The disease is only in one area, where my small and large intestine meet; i don't know the technical terms. They started me out on Pentasa and Entecort, but after 2 months of taking that I ended up having a partial obstruction and was throwing up, so i went to the ER; stayed in hospital for 2 nights. After this, I stopped taking the pentasa and entecort, and they put me on Prednisone. A month later and im back in the hospital. I have been on a cycle of tapering down the predisone and then i will flair up bad, go to the ER, because of pain, then be back on high dose of prednisone.

I just recently started taking MP-6 (Mercaptopurine) 50mg a day, about 2 months ago. 2 weeks ago they increased my dosage to 75mg a day. So right now I am taking 75mg of MP6 per day and 20mg of Prednisone per day.

Right now im frustrated, because there is not a day where i have no pain. I feel like the medicine is not working and I dont know what to do. I am hoping this group will help me, because I dont really know what to eat and i feel sick everyday. This very moment i have a throbbing pain in my stomach and i really don't want to go to the ER, because its just a repetitive annoying cycle; although i wouldn't mind having some Dilaudid, because it really works wonders.

 

[seaofdreams]

Welcome Kayvan. I'm sorry you've had to find us while in such an awful circumstance but I think you'll find this site to be a great source of support and information
I know it's hard to be positive but things will get better. Maybe try talking to your GI if you feel that your medications aren't helping you to get you onto something else. I hope you stick around and find the support you need

 

[Crohn's 35]

Hi Kayvan :welcome: to the forum. I Know how you feel and it seems like never ending right? You are on pretty potent drugs right now and if they aren't helping perhaps remicaide my help. Sometimes obstructions are scar tissue and or inflammation. Strictures are extremely painful if your food doesnt digest, and right where you are infected is a curve (around the appendix) which is where is it hard to get to on a colonoscopy.

I had a laproscopic resection done at age 32 and had relief for many years but went back to eating the wrong things and never knowing that diet is important. Avoiding dairy, chewy foods and raw veggies. Carrots have landed me in the hospital with a full obstruction so I know to steam everything. Having Ensure in the house is good for days when you dont feel like eating but you have to take meds.

Has your doctor mentioned surgery or the Biologics? Check out the low residue diet and eat slow, smaller meals more often throught the day. Red meat is very hard to digest and causes blockage. Do you see your Gi soon?

I hope you get some relief soon, you cant live on painkillers, even though it helps. Great bunch of people here to help you, we know exactly how you feel, hang in there glad you are on board with us!

 

[gypsigirl28]

Welcome Kayvan, I am sure you will find lots of support and advice here. Sounds like you have been through a rough time lately, I sure hope they find a med that will work for you. take care

 

[5 iron]

Hang in there 6mp can several weeks to take effect.

 

[DustyKat]

Hi Kayvan and :welcome:

Sorry to hear you are in so much pain. I can't add to what Pen has said. You have found a great place for support and info so hang around and browse through the forums and ask questions. Your Crohn's is in the Terminal Ileum and the ileum is the most common site for Crohns to be located.

Welcome aboard,
Dusty

 

[Dexky]

Hi Kayvan, welcome!! My son is on 6mp as well. We were told it takes 6 mos to get fully into the system. I'd say it actually took about 4. Up to that time, he'd still have occasional bloody D and cramping but after that time, he has been very well. Good luck to you!! If it isn't your remission med, I hope you find it soon.

 

[kayvank]

Thanks everyone. I will probably see the GI doctor within a week or two. I have to do blood tests right now, because they want to see if i'm intake of 6mp is good or bad. they have mentioned surgery, but i want to hold out as long as i can. Thanks again!