My brother's condition

[venukalpi]

My brother was diagnosed with Cronh's in 2007 and then he has under gone few surgeries and his condition was stable for sometime and then he is suffering with very big sores or wounds on his legs. The open sores are there for the last 2 years. He is in depression and lost faith and also written a suicide note. But luckly my parents saw him awake in the middle of the night and told him that they will talk to the doctors. When they took him to doctor, they suggested Remicade injection. But also tol them that there will be serious side effects.

But I wonder how can they treat him with injection when there are 4 very bid open wounds on his leg..?

I appreciate your valuable advices.

Thanks

 

[chrisnsteph1022]

The sores are probably pyoderma gangrenosum. I'm sorry he's having such a tough time. How old is he? I don't think remicade is recommended with open infections, though. It will make them harder to heal. Have they mentioned any other drugs?

 

[venukalpi]

Hi Stephanie,

Thank you so much for responding.
Yes, the doctor's told him that it is pyoderma gangrenosum.
When he was diagnosed 5 years ago. He is now 30 years old, unmarried.
He is on PENTASA medication now.

In 2007, he had undergone a Ileal resection surgery (Removed 1 1/2 feet effected portion of the Intestine). After that, he was discharged from hospital..he was doing good for couple of weeks..but for nearly 2 years..he suffered with severe abscess to both of his arms.
38 times they did minor surgeries. At last my parents took him to a plastic surgeon I guess and after his surgery, his arms were good till now.

Again he was good for few months and now from past 2 years, he is suffering with open sours/ wounds on his legs (pyoderma gangrenosum).
He is regularly taking Pentasa medication, but no change.

Even the doctors are not understanding his conditon, now they are suggesting to go to U.K or U.S.
But..we are middle class family..and cannot effort to get treatment in states more over, as you know..none of the insurance companies provides insurance to the existing conditions.

My brother is under depression now. My father also has heart disease. He had stroke twice. my mom had back surgery recently and My parents are very depressed and almost lost hopes..
At this point..I really appreciate your valuable time to read this.
Hoping to get right treatment for my brother.
Please let me know your opinion.

Thanks
Kalpana

 

[GutlessWonder86]

have you looked into a local CCFA support chapter for your brother? that way he can meet others like himself and get information on the best hospitals and GIs that will treat his CD symptoms. Definitely give them a call as they are always full of great information.

www.CCFA.org has a hotline where you can call or email if you need assistance with trying to pay for meds and treatments. It's run by experts who understand what we have to go through daily.

here's the link talk to a specialist:

http://www.ccfa.org/living-with-crohns-colitis/talk-to-a-specialist/

 

[Morgan_11]

Hi Stephanie,

I'm so sorry to hear of your brother's (and family's) struggles. Indeed, this disease is far-reaching in its effects. There is hope, however! I, too, have struggled with pyoderma. There are quite a few different options to try. Because pyoderma is a Crohn's-associated disease (auto-immune in nature), immunosuppressive drugs (like Remicade) can be helpful. The healing associated with the sores comes about by reducing the immune function in that area such that healing can begin -- they cannot usually heal like normal sores. I've been on Remicade for the PG that I've dealt with and had pretty great success. Another, and perhaps less expensive options, is cyclosporine. Too, there are local injections of steroids (I think Kenelog (sp?) is a common brand). Again, the primary function of all of these treatments is to reduce immune function. Healing can come about quite rapidly, in some cases.

Good luck and take heart -- there is life beyond this struggle for your brother.

Kindly,

Morgan

 

[NancyHany]

I'm so sorry for you brother and your family troubles I suffer from an unknown skin condition that doctors linked to my Crohn's, where sores open and ooze liquid or blood and it keeps on spreading. I recently started Remicade, I just had one infusion so far, while my other symptoms didn't disappear, my skin feels better even my husband noticed that for the first time I have no new sores everyday. Still you need to discuss with his GI if the effect of Remicade will be beneficial or not with the kind of sores he has. I'm also on Pentasa, I've been taking it for two years now and frankly it isn't doing or done anything for me, I'm just taking it cause I can't take steroids. Best of luck to your brother, I wish he feels better soon.

 

[Blue]

hey,

i don't know much about this type of treatment, but after reading what you wrote, i needed to make sure you, and your brother knows there are people here to help him, and people to talk to. No one is in this alone, although it feels like it sometimes, there are thousands of others who also suffer in silence. Its best to talk to people about it. Tell your brother to come on these forums and chat to people, im sure that'd make him feel better.

I hope he feels better soon

~Blue