Getting fed up with the doctors

[EvieBaby]

I've been feeling really rubbish all weekend, and I've spent a lot of time thinking about the treatment I have.

I was originally diagnosed in 2005 and now ten years later, I'm no better off, in fact its just worse. I go to the hospital to get reviewed every 3 months or so and every time I go and explain my symptoms no one takes me seriously. When I've had blood pouring from my back passage I get told its probably nothing. I had a Seton put in last September and I've never yet had a follow up appointment to see how things are.

I was on Humira and this just wasn't working for me, so I just got told I was being put on infliximab. No discussions about it, just got sent a letter.

I had a bad experience with the nurses over an appointment that I couldn't attend, and now I've got to go back next week and see the same nurses and I just don't feel comfortable with them. I'm fed up of just being told to come back in 3 months. When scary things happen to you you want to know why, not just be fobbed off that its probably nothing.

I don't really know what my options are but at the moment I just want to stop everything and not bother going back. I'm gaining weight as well for no real reason when I've really been strict with my diet. And the endless heartburn is driving me mad!! Having a bad day.

 

[Tuff]

Can you change doctors? My first GI was like that. He'd just tell me, do this, do that, with no explanations. I complained about him to the nurses at the hospital, and he started talking more. I think they forget that we don't know what's happening. They're also very swamped and have limited time. The nurses started giving me a lot of printouts to read about my condition.
I started using myfitnesspal, and it's really working for me. I also ordered a Fitbit.

 

[EvieBaby]

I've been using my fitness pal but been having minimal results. The exhaustion makes it hard for me to get motivated. If I was to change my doctor I'd have to go to a different hospital and seeing as I don't drive and I have a limited amount of time it would make my situation harder. I suppose I'm just having a bad day but the pain is really getting to me and I'm so fed up with it all.

 

[Tuff]

It's an awful disease Days like this, pamper yourself a little. There were days when I just wanted to curl up in a ball and not deal with anything. Maybe the infliximab will be your magic bullet. I have been in remission for a year thanks to it, and got my life back. All my fistulas are gone. Even the fatigue is gone for the most part. I still get tired if I exert myself too much. I have one patch of inflammation, according to my latest scope, so now I'm getting the infusion 6 weeks apart.

 

[Sita]

I totally sympathize with being fed up with doctors. I am in the US and there are too many patients and not enough doctors. I believe you have to be your own advocate and stay on
top of your medical care and coordinate it yourself, because the medical system here is very broken. Sorry about your situation. I agree, pamper yourself and take good care. Sita

 

[AJC - Australia]

I've been using my fitness pal but been having minimal results. The exhaustion makes it hard for me to get motivated. If I was to change my doctor I'd have to go to a different hospital and seeing as I don't drive and I have a limited amount of time it would make my situation harder. I suppose I'm just having a bad day but the pain is really getting to me and I'm so fed up with it all.

it is hard to find a good doctor….mine retired recently and i have a new one now and he isnt as good as the old one.

Evie - i think we all grapple with this kind of thing. Being ten years in and just having moments where you are OVER it….fed up, exhausted with battling it all the time for no real reward. But you sound like a strong person, many with Crohns are. The blood from the rear is pretty normal. If it is red/new blood then it is probably associated with something near the rear end, a hemaroid or one of his/her cousins….if it is constant everyday for weeks then it is something that is a problem….if it comes and goes i wouldnt worry too much about it.

finding a good doctor and finding other people with crohns who are getting on with their life - that is important.

and stay positive - you know, they are getting close to cures. There are so many more drugs these days than 20 years ago!

infliximab basically saved my life.

good luck