Just back from the doctor and so frustrated.

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Regular Member

Date Joined Feb 2009
Total Posts : 31
   Posted 2/23/2009 3:50 PM (GMT -6)   
Just came back from my Gastro appt, I have been battling this lung infection for over 3 weeks now and have had to delay my 3rd Remicade Infusion (was supposed to be Feb 4) ....all he said was it will be the Respitory Doctor's decision if I can continue on Remicade or not...if it's just a normal bug I have I can, if not then I can try Imuran (sp?) but it will compromise my immune system as well, or the surgery. I don't see the Resp. Dr. for another week.
He game my Safolak pills to start taking again and the enema's to help keep me in remission. 
I am so frustrated because obviously the Remicade is working for the Colitis, but is it causing the lung infection.
I also mentioned taking probotics (which I have been) and he almost had a look of disgust on his face that I would even try anything else.
Thanks.  I just want to feel better!
Male 38, diagnoised in 1998, first major flare in November 2008, have had 2 remicade infusions
have used pentesa, safolack pills, and enema's.
currently decreasing predisone, take folic acid, calcium, vitamin D, HMP powder and a multi vitamin

Veteran Member

Date Joined Jun 2008
Total Posts : 742
   Posted 2/23/2009 4:10 PM (GMT -6)   
Ugh, I hate when doctors make that FACE! You just ignore that and do what you need to do. I did something that sounded totally absurd to get into remission (much stranger than probiotics) after the meds my doctors kept giving me wouldn't help. They're not always right and they don't always know best. Sorry to hear you're facing a tough decision about meds vs. infections. That's a rough spot you're in, and I hope you're able to shake your infection without stopping your meds. Let us know what happens!
DX:  Pancolitis as of 9/08 (Proctitis as of 1/08) and IBS
Current Treament:  Spinach/Sunflower Seed Diet
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Rowasa, Bentyl, Cortenema, Asacol, Iron, Zoloft, Acidophilus.
Status:  Remission

Regular Member

Date Joined Feb 2007
Total Posts : 212
   Posted 2/23/2009 4:32 PM (GMT -6)   
Sounds like new doctor time! I went through doctors like old tissues until I found the right one. This guy doesn't give me the creeps like most doctors do and when I talk about other things I'm taking, he asks me how they're working. He says if they're working then keep taking them. He's very open about trying new things and likes to hear how it's going.
- DXed with "left sided" UC in 1998. DXed with "proctitis" Oct. 2007
- Sulfasalazine 3 500mg tabs twice daily
- 500mg Vitamin C, 1 Multivitamin, L-Glutamine
- Max Acidophillis EC Capsules 350Mg(7 types of bacteria with over 42 billion viable cells) with 50 Mg colostrum & 50 Mg FOS(fructo-oligosaccharides)
- Experimenting with this or that on occasion. Always open to new ideas.
- Colonoscopies - 2 (Due for my next one ASAP)
- Canasa 1000mg @night. Started Oct. 23, 2008
- Niferex-150 Forte 1 capsule 2x Daily

Eva Lou
Veteran Member

Date Joined Sep 2006
Total Posts : 3442
   Posted 2/23/2009 5:02 PM (GMT -6)   
That's a tough decision- I got really ill with respiratory problems from an infusion & wound up in intensive care for a week. We think I had gotten pneumonia prior to the infusion, but didn't know it, then got the infusion & Bam! Bad, bad time. So after that, I was terrified to go back for more infusions. But I did, & things have been ok. Although, I have had pneumonia twice since starting Remicade, & I think my lungs have become somewhat compromised. Every infusion makes me a little leery now... So I don't know what to tell you- I would take what the respiratory doctor says very seriously. You have to weigh the pros- so it helps the colitis, but what does that matter if you can't breathe?!?! I disagree with the posters telling you to find another GI- your current doc sounds as if he knows what he's talking about- it's unethical of him to allow you to continue on the Remicade with a chronic lung infection, & can cause death. Obviously the Remicade is working, but all bets are off if it's also making you sick. While I was hospitalized, we (my GI & I) were leery about going back on the Remicade- when my next infusion was due, I had labs done prior to make sure everything looked good, & pretty closely monitored any respiratory issues thereafter. Mention that to the respiratory doc, maybe he'll agree to give it a try.

diagnosed with UC '02
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Fiber supplement

Elite Member

Date Joined Apr 2004
Total Posts : 23551
   Posted 2/23/2009 9:20 PM (GMT -6)   
You can live without your colon but you can't live without your lungs. Do what you feel is best and I'm sorry to hear that is the choice you have to make.
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
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