Seeking Advice....

[AlyssaAshley]

Good morning all! This is my first time trying one of these forums, im hoping i can get some help....I am personally not diagnosed with Crohns Disease...My boyfriend and i have been dating for 2 years and it all kind of happened suddenly. He became seriously ill for 2 months and because we live in a small town where it isnt seen often it seemed to take forever to get a diagnosis. After 2 months he lost 65lbs and was hospitalized for over 3 weeks here in town. After almost killing him by feeding him over 14 percocet a day they finally sent him to Pittsburgh, PA where is was treated not only for crohns but kidney and liver failure. He's only 22. Finally after receiving the steroids, acacol, and all the other meds they decided it wasnt enough. They started him on Remicade. After realizing he needed an iron and blood tranfusion they also decided to double his dosage. We get a phone call just a week ago saying they dont believe its working, and they want to refer him to a colon/rectal surgeon. Needless to say he is TERRIFIED and stress isnt helping us in this case....no one will see him in our town now because he's already been trreated by other doctors, its been hell trying to find anyone who will give us advice or help, ive been doing research like crazy and sometimes i feel like i could do a better job than some of the doctors, or that could just be me being protective of the person i love. If anyone has any advice on how they got through this, or even if the surgery is a good idea, please feel free to give me anything....anything at all...

 

[rygon]

Welocme to the forum. Sounds like hes having a very bad time at the moment.

How long has he been on Remicade?

Theres not a lot of other drugs that may help (Prednisolone is a short term drug, theres also humira), but if hes that bad surgery may be the best option. Theres loads of people who have had it done on this forum (from just a small section to most of it out) and I think the vast majority say its the best thing theyve done. it allows them to live a relatively normal life

 

[AlyssaAshley]

Its very bad right now, he was one single dose of Remicade for 2 treatments...first treatment was back in Feburary and then 2 weeks later he had another single dose, and when we went back for the 3rd he had a fever so he was admitted into the hosptial for fluids. His doctor then suggested we do a double dose which was about 5 weeks after. They also have him on a 28 day treatment of Vancomycin as of now because of the reoccuring CDiff that keeps coming back. They are thinking of continuing the Remicade double dose every 6 weeks until he can speak with a surgeon. He isnt on anything by the Remicade and Vanco now, beside vitamins. He has an elevated platelet count but they said that was normal with the transfusion. For the past 2 months he has been complaining of constant muscle ache and pains, lower back, feet, arms, pretty much everywhere. The only thing he can take is Flexerol and extra strength tyenol. He's just to the point where he is willing to do whatever to feel normal again. This has been going on since early October of last year and hes just worn out. He's defintiley considering the surgery, just very scared because they cant seem to get him into a remission.

 

[Miss Underestimated]

Is Pittsburgh too far for you to go? There is a medical school there at the University of Pittsburgh. They will have some of the best gastroenterologists in your area.

 

[AlyssaAshley]

Its about 2 hours, give or take, from us. His GI doctor is out there now, it just seems as though its impossibe to get ahold of her when he gets bad. Sometimes it take several days to weeks to hear back from her, and by that time its almost as if it got the treatment they finally prescribe him would have saved him all the pain a week before when we had called. I know doctors are busy, and they have other patients, but it just seems like we get the run around all the time. Like i had said before, we tried getting 2nd opinions of other doctors but it seems like no one will even touch him if hes seen someone else already. I just hate seeing him so weak, ive been trying everything from diet, to natural remedies, to surgery options, more meds and theres just so much out there that we dont know what direction to go. He has a hard time talking about his disease because its most of his life now. If you have any recommendations of surgeons in the Pittsburgh Area please share!! Ive heard wonderful things about UPMC but unfortunately i havent been able to get any names, any suggestions would be more than appreciated!

 

[Astra]

Have you tried our Doctor Directory?

http://www.crohnsforum.com/doctor/us/pa/

 

[AlyssaAshley]

Anyone experiencing any severe muscle and joint pain? He can barely walk, he just had a hot flash and nearly passed out. Shortness of breath, aches and pain, as well as a fever of 101.5....could be a virus on top of the disease but he's on Vanco still, seems odd

 

[Miss Underestimated]

Is he still on Remicade? Is he still running a fever?

 

[AlyssaAshley]

Still on Remicade and has a fever. His doc called and said some joint pain is normal but this looks like its crippling pain.

 

[Miss Underestimated]

Sounds like the doctor isn't taking it very seriously at this point. I'd call again.

http://www.rxlist.com/remicade-drug/consumer-side-effects-precautions.htm

 

[tots]

I ended up at the IBD clinic at UCLA when I was first Dx with Crohns. I would not use a teaching hospital again. If you have to end up in the emergency room every night do it!

Lauren

 

[AlyssaAshley]

He has an appt with a new doctor on the 7th, I'm hoping they take better care of him, or atleast tell us what to do, hes tried all his doc has said. But she's weeks late on his prescriptions and when he has an immediate problem she takes days to get back to us. Just frustrating to see him get better then worse, then better, then worse

 

[Miss Underestimated]

I go to a teaching hospital for primary care - I love it. I imagine there are some variations in quality depending on how well-run the place is.

Most of the doctors at teaching hospitals have private practices. My gastroenterologist is on the faculty there, but has a private practice.

 

[Miss Underestimated]

He has an appt with a new doctor on the 7th, I'm hoping they take better care of him, or atleast tell us what to do, hes tried all his doc has said. But she's weeks late on his prescriptions and when he has an immediate problem she takes days to get back to us. Just frustrating to see him get better then worse, then better, then worse

Great! I hope this doc is more attentive than the last one!

 

[Adam1971]

Hi there...

I am surprised he's not been hospitalized, given all you have described, as well as from my own recent experience.

(http://www.crohnsforum.com/showthread.php?t=35547 )

Has your bf been on prednisone? I guess I am wondering because if he has a great deal of inflammation, most docs seem to go for this as the "big gun" to get remission-like effect within days.

I hope he gets better with better care. I hope you are taking care of you, too. Its a hard place you're in.

 

[AlyssaAshley]

He was on prednisone but has been off it for quite sometime. Just confuses me how some of these doctors treat their patients. He's 22 and this isn't the life for him, anyone for that matter, but its like they don't take his symptoms seriously. I've called so many times and left messages asking questions, what we could do from home since the drive was 2 hours and we couldn't just hop in the car and come in, I wouldn't get phone calls for days. He's currently on a double dose of remicade every 6 weeks, plus vancomycin for cdiff. Then Tylenol and vitamins. They said they aren't sure what's working and what's not. I just don't understand why they aren't doing more to help. His doctor told him he can eat whatever he wants and every bit of research I've done has told me otherwise, that diet was the most important. He needs a doctor who is actually going to help, I feel like I know more then she does. He also has an apt with a colon/rectal surgeon for an opinion as well.

 

[Miss Underestimated]

He really can eat anything he can tolerate - generally, if he's that sick, try to keep the fiber out of his diet. My guess is he's not eating anything much - it makes him feel worse. I know that's what I did. I just didn't eat solid food.

With some people diet can be crucial, But don't just assume that. It's different for every one of us.