I got a second opinion... (and a third... and a forth) (sigh)

[Scifimom]

I saw an immunologist two weeks ago, along with a new GI in a University - research hospital. They both said that my Crohns is rated as severe (not moderate to severe... just severe) they both suggested Remicade ASAP. The GI heard my concerns and said that if I want to he can keep me in drug combinations for a couple of years until I am happy with the clinical researches of remicade. BUT he cannot foresee my quality of life. Basically he said that my life will probably be crappy unless I go on Remicade. And still I have a chance to still have a crappy quality of life while ON Remicade cause of the scar tissue on the stenosis I have. The he ordered a CT scan which I had last week and send him the results. He called me and said that even though my CRP levels are normal my bowels are inflamed to the pont that he would suggest either surgery or Remi (again). I also talked to the Immunologist, he said that my immune system is screwed beyond repair at this moment that the crohns cases that have such aggresive form with no previous symptoms (like mine) are the worst and it takes a lot of time to even put them under control. Conclusion... my prognosis sucks right now. I told him my concerns (again) and he gave me the "Remicade is safe when monitored properly" lecture he said that they can put me in the program there (very nice brand new hospital with lots of facilities, instead of the crappy old hospital I go now). He admitted that the long term side effects are not known yet and they "may" be scarier that crohns but so far it looks like they arent and so on.

Then I send the CT scan to ANOTHER GI in Crete. Without even asking about my medical history just looking at the MRI results he said that I must do an aggressive treatment NOW. Meaning Remicade NOW. He also said that the AZA is definately not working since the image of my bowel while on AZA and pred looks like I am in full flare and I shouldn't look like this.

On the other hand my CRP levels are still normal, I had blood work on Tuesday but the symptoms are coming back as I am tappering of pred (last day next, Tuesday) More Ds more fatigue and my belly looks swollen on the right side. I have a GI appointment tomorrow I guess I will have to join the Remicade club soon no matter how scared I am
:stinks:
:depressed:
:grumpy:
There are not enough smilies to describe how I feel for the last two weeks

 

[Entchen]

Dear Scifi: Sending you wishes for moments of feeling well, the ability to find calm, and bravery as you make this difficult next step forward.

xx

 

[rottengut91]

Hey Scifimom :bigwave:
I totally feel your pain, both mentally and figuratively. I just had a colonoscopy on Tuesday. My CD is also very severe. In the past, it primarily was in the ileum, now it's also in my stomach, dueodenum, and rectum. I have narrowing in both ileum and colon. My GI wants me to start Remi soon as well. Like you, I have many concerns about being on this med. :nonono: I too, got the "Remicade is safe when monitored properly" lecture. I'm still apprehensive, but I know I can't go on the way I am at the moment. Maybe we can start this adventure together!? :hug:

:sun:

 

[Shellybum]

:sorry:
Scifimom and rottengut91
I'm sorry to hear about what is happening to you both:confused2:
I am sending you a ,eesage to say my thoughts are with you at this difficult and horrible time, when you thrust into this world of crohns and you don't know what to do for the best.
I'm sorry I have no advice as I'm new to all this too,but just thought I'd send my best wishes to you xshellyx:ghug:

 

[Scifimom]

Thanks everyone for the love and wishes and hugs. On top of everything the company I work for announced layoffs. Six coleagues were fired today and we are expencting ten more to be fired in two weeks. Everyone has 50% chances of being fired. Ugh I am so depressed (both from the news and the pred) That I cry at my sleep. I keep a cherrful face mostly for the sake of my children but I dont know how long I will last.

And I have the University which starts in Oct 16th Yay more work for me.

Scifimom

 

[Crohn's 35]

I feel for you and your choices. I am not gun ho for surgery because I have had a couple..but... scaring in my opinion cannot be reduced pain with Remicade, and scaring will get worse when you flare. If it were me, and everything you have been through I would pick the surgery. You will have a better quality of life provided you take care in your body and diet, stress reduction, and maintence drugs. If you have ever had a full bowel obstruction with pain worse than natural child birth (been there done that) you will pick the surgery. Just my opinion only. Good luck with your decision.

 

[Sue-2009]

Man...Crohns stinks!!! I feel for you both! Hang in there....Try...We all understand...Pens a good source of info...as well as others here. Peace to you both! Sue

 

[Jennifer]

If you had surgery would it be a small bowel resection only? How much would be removed and would any of your colon be removed as well?

Back when I had my surgery Remicade and many other drugs weren't around and when the drugs were working (Prednisone, Asacol, and 6MP) they said that I needed surgery. I had a resection where they removed my ileum and 8" of the small intestine. As Pen said I can't imagine the drugs working well enough for all of that scar tissue so surgery may be a better option for you. But I don't know cause I've never taken Remicade and don't know that much about it.

 

[Crohn's 35]

Man...Crohns stinks!!! I feel for you both! Hang in there....Try...We all understand...Pens a good source of info...as well as others here. Peace to you both! Sue

:wub: thanks.

 

[Scifimom]

If you had surgery would it be a small bowel resection only? How much would be removed and would any of your colon be removed as well?

No it will not be a small bowel resection it will be both . My original GI saw the CT scan today and said that with the current appearance of my bowels surgery will probably cause short bowel syndrome, or they:thumbdown: may cut me open and then just close me again.

I had my prescriptions for more lab work today (I am a walking pin cushion by now) in order to start either Remi or Humira next week.:thumbdown::frown::stinks::crabby1: :depressed: