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10-18-2013, 10:19 PM   #31
jlm
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Location: Winnipeg, Manitoba

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I've been on everything you've listed plus methotrexate, Imuran, remicade (8years), Tacrolimus, and currently Humira.

I've also done TPN infusions each night for the last year and a half and for a year before that. I have a port in my chest that I use for the infusions. And 2 years ago ended up in the ICU and was septic from a blood infection from my central line.

There hasn't been one time since iwas diagnosed have I thought about what could happen to me down the road. I want to feel good now, I want to work, and afford things, I want to go out for dinner, movies and hockey games. If my parents didn't have the option of remicade when I was started on it I probably wouldn't be here. Nothing worked for me and predisome gives me the worst side effects ever. Nothing currently works for me besides Humira.

I know is a ridiculously difficult decision to make. But image getting yourself to a place where you felt 100%. I bet you've forgotten what that feels like. We all seem to hit a place where we just except the current symptoms as being our normal. If you felt better you're anxiety level would decrease. You may not need biologics forever just to get you back on your feet. Then who knows maybe you could control it with diet and vitamins?
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Jenna M.
Diagnosed 96'
On Humira once a week.
Nightly TPN.
Four resections.
10-19-2013, 05:22 PM   #32
Daunting
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Join Date: May 2011
I am so sorry to hear what you have been through. Those are the things I am most scared of that happening to me, I do not know if I am strong enough for that. I hope that I am but I feel that I am not.
__________________
Finally been told I have Crohns


B12 injections started on 14/03/2013
Astmatic (ventolin when needed)
Paxil 15mg started again 18/09/2013
Synthroid .075mg
Lomotil as needed
Xanax to sleep when needed
Doctor switched me from Salofalk to Mezavant
Not sure why
10-19-2013, 06:50 PM   #33
AJC - Australia
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i think it is important to realise that there are people with crohns that feel a lot worse than you might be feeling right now.....to put it into perspective. When i have had a 'flare' it has lasted for months and months and months and eventually required surgery...i have had years where I cannot eat without pain. Taking Imuran, or any other drug was a very simple choice as i was lying in hospital with no life at all....it was like the drugs offered hope. Yes one gets scared of cancer, but what is the point of living if you just feel like shit all day and night for months on end?

I would suggest that if entocort isnt working to calm it down a little bit, then go back to prednisone. entocort gets released in the small intestine, whereas prednisone gets released in the stomach...if the crohns is active in your upper tract or near your bum, then entocort isnt really the right cortisone to take? You probably know from your colonoscopy where the crohns is? sometimes it can be in two places at once and sometimes it can be from the mouth all the way to the anus.

most importantly is to try and calm yourself down......

anger is very normal, screaming at top of the lungs is probably a good thing to do.

As with every one of us that has to come to terms with this horrible disease, it is a process of denial, anger, fear and a lot of pain and heartache......not a walk in the park.

the bright side is, it can go away and it probably will go away.........you just need a few days where you feel alright, then get the meds right and try and move in the right direction....

good luck!
__________________
diagnosed 1994 aged 18. 3 surgeries. Remicade is my drug.

I believe this could cure crohns disease.

-Dr John Hermon -Taylor is trying to cure Crohn's disease.
10-20-2013, 10:11 AM   #34
jlm
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Thanks for the support it really isnt that bad. It could be worse. I can work, I have a very supporting partner we go out and I mostly have a life. I had to leave an event early last night because there was only one small shared bathroom. But thats how it goes.

I honestly think you would be able to do it if you really need to. Like happy said, decisions are easy to make when your in a hospital bed.

And it really just becomes natural once you start feeling well. Youll continue the treatment because it makes you feel much better
10-20-2013, 10:29 AM   #35
CeeCeeGo
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Location: Wirral, UK

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Hi Daunting

I have read through your posts and the replies. I think the fact that you are shortly seeing a psychologist is a very good thing for where you are right now. I too, have really struggled with the mental/emotional/psychological aspects of this condition and having some counselling has helped me to start to deal with those aspects.

Like you, I didn't want to do the 'heavy' meds. I am now self injecting Methotrexate and it isn't (yet) as bad as it could be. I tried Imuran and 6mp but reacted badly.

All I can say to you is that in my short experience with this condition, stress is the worst trigger for me. I have really struggled the last few months with stress and this has aggravated my physical symptoms. I kept resisting going on the heavy meds but my GI persisted and now I am on MTX jabs (which are really easy to administer).

Give yourself a break. At times, you are going to feel low and at other times you will feel better - that's life.

I hope seeing the psychologist helps - give it a chance.

Take care and try to find something every day that makes you smile.

Carol
__________________
Carol

DX - June 2012 with mild/moderate Crohns. In July 2012 bowel perforated unexpectedly and needed emergency surgery.
Current meds/supplements - Budesonide (reducing dose over 3 months), B12 injections (every 10 wks), Vit D tabs 800iu x daily, Ferrous Sulphate 200mg every day, Folic Acid once a week
Previous meds - Allergic to Azathioprine, 6MP, Pentasa & Asacol, Methotrexate injections (didn't work). Stopped Humira after 2 years due to ineffectiveness.
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