remission but side effects

[Crohnie1992]

So, my GI told me the other day that I'm the best remission case he's seen in over 30 years of being a GI. The thing is, my mother was at my appointment and my doctor is a complete asshole, so of course the only thing he focuses on is that I'm "cured" and I should be going back to normal life while ignoring the fact that I've been having major problems with my muscles, joints, and extreme problems with fatigue. It's so bad that I can barely do the paper route I have.

Of course since my mother was there, all she heard was that I'm "normal" now, so she's been on my ass about getting a full time job because we don't have much money. The thing is, I know there's something off. I can't tell if it's the side effects of the Humira or if it's something else. Either way it's a bad thing because if it is the Humira then I would have to decide if the side effects are worse than the chance that my crohn's will flare up again (which is what my doctor said would happen because I had one of the most severe cases he's ever seen) or if it's something else I'd have to deal with that.

I've been talking to my family doctor trying to get a referral to a rheumatologist and he's had blood tests done on me that I'm waiting to get back.

I'm not sure what to do. I feel like complete crap and I can barely do anything and now I have my mother in my ear saying "you're not sick anymore".

I need some advice guys.

 

[SmellyMelly]

So, my GI told me the other day that I'm the best remission case he's seen in over 30 years of being a GI. The thing is, my mother was at my appointment and my doctor is a complete asshole, so of course the only thing he focuses on is that I'm "cured" and I should be going back to normal life while ignoring the fact that I've been having major problems with my muscles, joints, and extreme problems with fatigue. It's so bad that I can barely do the paper route I have.

I had the same side-effects from the drugs I was on.

Is that your issue too?

The GI said I was "better" since the drugs had stopped the bleeding and I could eat again and had put on weight.

But the side-effects from the drugs made me very very sick in so many other ways health wise.

Sending you lots of pink healing energy and best wishes.

 

[rollinstone]

I hear ya, though id stay on the meds if they're working, I was in the same boat in feb still felt crap but was apparently in remission, just need to stress to your mom you still feed bad, the thing with humira and remicade are you can be in remission but still feel crap, they can stop the inflammation but the disease itself takes a toll on energy levels etc. Just during a flare up you're usually focused on the running to the loo and all the rest that you dont focus on the fatigue etc but they're usually still all there. So my advice, stay on humira if it's working, take each day at a time and try enjoy life as much as possible.

 

[Jim (POPS)]

I hear you man. Sometimes someone in our family just don't get it. I'm lucky I have a wife that truly understands. She had colitis starting at age 25. We got married younger than most, she was 18, I was 24. We had 3 young boys 2, 4 and 6. She had it BAD, she had a surgery called J pouch. The took her colon and that cured her because colitis is only in your colon. But she was so sick for so long. She got down to 82lbs. Shes 5'2" but still she got way to long. She ended up with a ileostomy.
Fast forward to 2011, I'd been having diarrhea since I was 40ish. All the Dr. could say was I have IBS.
Well ther was a spot on my appendix so they went in to remove my apendx and found Crohn's so bad they had to do a bowel resection on the spot. I went home and 3 days later and my shirt keep getting wet so I went back to the hospital and after 2 days of tests they found that my small intestine was leaking, I had went septic and need surgery again fast. The went back in to fix the leak and try to save my life. When I awoke I found that I had a ileostomy just like my wife. But they said if I servive this they can put me back togeter when Ive healed. 9 months later they did put me back together but I was just a mess and I've had 3 more surgeries, have a ileostomy (bag). and I have a very limited menu and it's very small. I'm always getting blockages and I'm down to 122lbs. I was always around 175 or more.
Back how family treats us. I just wanted to give some background to set thistory up.
So my wife and I both have bags, I was diagnosed at age 61 and I'm now 71. I have a pretty bad quality of life but you know I don't care what any family thinks about my illnesses. They just don't understand anything about Crohn's. The ones that talk bad about me I just ask them to jump in and get educated about it and then and only then we can talk because you are talking about something you know NOTHING about. If you love me you'll do that, if you don't that means you would rather keep talking about something you know about and don't love me enough to find out whats going on with me. Crohn's is different from person to person.
Tell them you don't want there pity, you just want them to try and understand. Why would I make any of this up, I wouldn't wish how I feel on anyone. I don't know how would.
The Dr. Can look at all the test results and say things are looking up, but the only way you can get the whole picture is also talk to the patient.
I don't think I will ever feel 100% so I take it day by day.
Note: most GI Doctors are ASSHOLE'S. I've had them make me feel like it's my fault that I have Crohn's. If you have one of them get a second opinion and keep doing so until you find one you like working with. I have great one. But with Crohn's you must be proactive. There only a Dr. Tell them what you expect from them and what you are willing to do. Educate yourself as much as you can but DON'T come across as a know it all. Let them know your willing to try new meds. Ask if there are any trials for you may would qualify for. This forum has been so helpful to me.
I wish you the best. Feel free to contact me anytime.
JIM (Pops).
Take it one day at a time and find something that fills your heart and mind other than Crohn's. This is not curable yet we just have to heep our heads up and move forward. ONE DAY AT A TIME MAN