Please help...

[sdee1]

Hey everyone,
never really done the whole forum thing but I am at the stage now where I would love to hear from other people going through similar pains as im starting to lose the will to live!!!!

I was first diagonised 2 years ago mildy 8cm infection. it is now at 20cm and I have had 4 hospital stays since January with flare ups. My dad has it severly too but we dont suffer with the same pain.
I dont have diarrhea or sickness. When I have an attack as I call it I get chest pains by my ribs/breasts feels like im having a heart attack or food is stuck mixed with acid reflux and indigestion. All those rolled into one!
I have been put on pentasa in the past but am currently on 8 x 5mg predisone tablets a day and starting azathioprine this week.

My main problem at the moment is every night I wake up between 2am-6am with the chest pains and I cant sleep and then it goes once I walk about but then starts again the next night. normally I have flare ups for a few days and they go now I am having this pain every night. Im so fed up and my specialist has said surgery is the only way foreward now if the predisone and azathioprine dont work. I will see how I get on with it as its meant to be 6-8 weeks until results.
would love to hear if anyone else suffers the same.
thanks!

 

[Manzyb]

hi! Welcome to the forum

I'm not sure about the chest pains that you are experiencing. Is it like in the middle of your upper stomach where it hurts?

As far as treatment goes. Did they tell you that you have a stricture caused by scar tissue? if that is what is going on with you, then yes, surgery is the only thing that will fix it. However, if your problem is inflammation, then there are many other drugs to try than the 3 that you have mentioned. Keep in mind that the Aza takes a couple of months to take full effect.

I hope you get some relief soon and get to start feeling better. How long have you been on the steroids now? They usually help fairly quick.

 

[sdee1]

Hey thanks so much for a quick reply.
Im not sure what the chest pains are and nor is my specialist one of the leading guys in London! At the moment its inflammation although the infected area in my illeum has more than doubled since my last endosciopy, colonoscipoy and CT scan etc.
I have been on the steroids for 3 weeks now since I left the hospital x 8 a day... not happy about this either for weight gain. but if it makes me better i would take 100. I will see how Aza works as this is meant to be the best?
thanks

 

[Manzyb]

A lot of people do really well on the Aza, but the biologic drugs out there are very good at getting the disease under control. If the Aza doesn't work for you, there are other alternatives!

 

[hurla31]

I do suffer from some of your ailments as well. I don't really feel I can relate to many crohns people at all. I don't have diarrhea or cramping really. I can eat whatever and drink alcohol. I have been having rib pain, that's the only way to describe it.It hurts on my sides and back as well. The pain is so bad sometimes, I especially feel it when I wake in the morning. Takes a while to walk it out, my morning shower is the best!! I have trouble with my hip as well. When I sit for til long it really ceases up. Takes a while to walk the pain out. While on prednisone its been much better. Although everytime I taper it come back twice as bad. I'm also on imuran, which seems to not work for me. So I'm in the process of starting remicade. You are definitely not alone.

 

[deb123]

I have suffered from rib and chest pain, and even thought i'd pulled muscles in my chest, or even a chest infection because it even hurt to take a deep breath. The pain was worse at night like i had a weight on my chest. My doctor pescribed Omperazole, which did help a bit. I have Crohns but am undiagnosed with my recent ill health. I have had so many wierd and not wonderful symptoms this time - just waiting for recent MRI results. I have been told that these pains can be referred pain, but unsure myself.

 

[David]

Hi sdee1 and welcome to the community! I'm really glad you joined I'm so sorry to hear you're having so much trouble though

As I was reading your post, one thing that came to mind was enteral nutrition. I like the idea of enteral nutrition in your case because:

A. If what you're experiencing is more acid reflux, it may help with that since certain foods can trigger acid reflux.

B. It can also help reduce flares or even put them in remission.

Anyway, it may be something you want to research and discuss with your doctors.

The rest of you who are experiencing chest pain, research costochondritis. That's what I have and if you think it may be what you're experiencing as well, let me know as, while I haven't cured mine, it's a heck of a lot better. Though hurla31, I'd look up Ankylosing Spondylitis and see if you think that's something discussing with your doctor.

 

[tek254]

possibly stomach/ abdominal spasm? I have had these and they freaked me out.

 

[movienut10]

I suffer from severe diarrhea, usually 5 to 10 times a day with the worst being when I soil myself without any warning (usually within minutes after I eat) severe abdominal pain, gas, bloating and nausea. I have lost just over 30 pounds in the past few months. Have not had any chest pains, but what I do have is enough really.