Only prednisone seems to work

[Roman]

My gf has had an awful time with her CD. She's taking Cimzia now that doesn't seem to be working at all. She's been on it for about 6 months now. Before that she was taking Humira, which didn't really help either. The only thing that seems to help is the prednisone. She has just weened herself off of it and is already starting to go to the bathroom more and the pain is back.

Her scar tissue is horrible. She has been told by her dr that it may have gotten too bad and she may have let it go for too long before seeking treatment. He said that's why the scar tissue is bad. It is only in her colon. If I understand what I have read, there is nothing that can be done about scar tissue and that may be the cause of her pain and having to go to the bathroom so much. Which would also explain why nothing has been working except for the steroids. I don't know if I'm right about that or not, but it seems logical.

I think she needs to have the damn thing taken out. She's been in the hospital 6 or 7 times this year, staying for a week or more at a time. Every time they run steroids and antibiotics. Once she gets to feeling better they send her home with more steroids and antibiotics. She says she hates the prednisone because of the side effects. She seems to get every side effect of the medicine. Does surgery seem like her best option now? Her dr seems very reluctant to want her to have her colon removed, but I think he's just delaying the inevitable.

 

[Roman]

She has taken other meds before, but I'm not sure as to what they are. Her last colonoscopy showed that almost all of her colon is infected. I don't know if all of it had scar tissue or not though. They said that they would have to remove the whole thing. Wouldn't scar tissue cause problems by itself and then the CD make it worse with it's own problems?

We're in Nashville, TN.

On top of the stomach pains and frequent bathroom trips, she's recently started having some bad lower back pain. I hope it's not ankylosing spondylitis like what I've been reading about lately.

 

[Roman]

I've asked her before and I believe she said she has both? I'll have to ask again to be sure.

edit: yea its both.

 

[shazamataz]

Yikes, sounds like she is having a rough time! Hope she can get sorted and well soon

 

[Crohn's 35]

HI Roman, you are such a sweetie for coming on here and wanting to help your gf, you are a gift to her, support means everything to a Crohnie. I know it is a hard decision but I was also in the hospital way too many times and had a little 4 year old who was scared every time I went. Me too! Scar tissue doesnt go away, and I had a laproscopic surgery done and bought me 7 good years of no pain. I too was on some of the biologics, and whilst it works for some but not all. Prednisone is my most hated drug. The sides are very visible and emotional and not to mention it eats the calcium in your bones. Surgery could be for her, I am not a doctor so I cant say. I do know being sick all the time wears you out and can be scary. Please keep us updated and welcome to the forum!

 

[farm]

Maybe she could try Entocort instead of Pred?

 

[Roman]

Her aunt has CD and is taking entocort. I think she's having the same back pain now too.

I was under the impression that entocort was for milder CD. Her's is waaaay past mild. Cimzia is for the treatment of severe CD right?

I know she hates taking the prednisone, but I'm trying to talk her into taking it again. She's getting worse and I know it's just a matter of time before she goes back to the hospital. And I do NOT want to sleep in those chairs again.

 

[farm]

They gave me Entocort to avoid Pred so I could actually sleep some. It may be milder and not an option in this case. I wish you guys the best.

 

[Jared]

Unfortunately prednisone is not a long term solution, it's only for short-term use. You guys will have to figure out another way. As far as surgery goes, I'd trust the GI for now. Studies show that once a person has surgery, about 50% will have to go back for another 1 or more. As far as what meds she should be taking I couldn't tell you that, but if she hasn't already try sticking to a very strict diet. There are some natural supplements like fish oil that can help reduce inflammation as well. Well anyway good luck

 

[Roman]

I'll definitely look into the fish oil and other supplements. I'm trying to get her on a high protein, low carb diet, but she can be pretty stubborn. Plus, with her scar tissue the way it is I think food in general is going to hurt to at least some degree.

 

[Crohn's 35]

I know that someone can have both because my sister has UC and CD and the worst form of it. From last I heard from her she bleeds alot and no pain, I am the opposite I dont bleed and have pain. So it is possible to have both.

Entocort is for milder cases, mild to Moderate, Remicade is usually the first choice of most and used in moderate to severe cases. Humira is a bit milder at least for me and never tried Cimzia so I cant help you there.

Even if she has to have surgery unless it is a dire emergency, most surgeons dont operate if you are infected, or they shouldnt at the very least. Sometimes high probiotics help, it has done amazing for me. But everyone is different. Hope she gets relief and soon!