One step back it seems

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PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 4/22/2008 8:13 AM (GMT -7)   
My husband in the hospital has been making some very slow but steady progress until this morning. His stools, while they were still diarrhea (without visible signs of blood), were improving in viscosity, and we were hopeful he'll start forming stool. However, this morning, he had very watery diarrhea that looked red (so there was blood in it). This is so very frustrating and disappointing. Can the sudden re-occurance of bleeding just be another phase in the healing process?

The other thing I wondered is if the Remicade is just starting to wear off, and the immune system is once again starting to gain the upper hand and is now damaging the colon. I'm hoping he doesn't back slide so much that he starts having cramping and pain again. I was so happy when the pain ceased, and he was able to eat without an increase in symptoms, and actually stop losing weight.

He's due for his next dose of Remicade on Thursday (4/24). He's being infused at 5mg/kg rate. Should we ask the doc for a higher dosage like 10mg/kg - would that last longer? I'm worried because it's been less than 2 weeks since infusion, and the blood is back. The next time he has to be without remicade for 4 weeks and then after that for 8 weeks thereafter.

Give me some advice please. He's still on 120mgs of solumedrol, plus he's on remicade, lialda, canasa, colestipol, elavil. It looks like they've already thrown the medicine chest at him, and he's still not getting any better. Should we try higher doses of steroids? Higher doses of remicade? More/different antibiotics? Or do I just need to take another chill pill?

Help.
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff
Currently in hospital for past month
Canasa, Lialda, Vancomycin, Colestipol, Elavil, IV Solumedrol 120mgs, Remicade (1st infusion April 10, 2008), FloraQ, FloraStor, Morphine Time release for pain


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 4/22/2008 9:35 AM (GMT -7)   
lol...your comment about just take another chill pill! Don't we all wish it was just that easy! :) It's not uncommon that the remicade may be wearing off before his next infusion since he hasn't had the initial 3 doses yet. Try to be patient with the remicade. It may take up to 5 infusions before you fully see the effect that it is going to have. Right now, they won't increase the frequency until you get through the initial 3 doses, then after that, you could talk to the dr. about going every 6 instead of 8 weeks. Personally, I would hold off on increasing the dosage until you have tried to increase the frequency that he is getting it.

Also, he may just be having a bad day...we all can have those every once in a while. It is especially more common when he is still healing. Was he too aggressive with his food yesterday? Did he eat something different?

I myself wouldn't increase the pred dose. 120mg is alot. Keep us posted....

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 4/22/2008 9:50 AM (GMT -7)   
Thanks for the reply. I just don't want my husband to again back slide into pain and cramping. It's so hard to watch him in so much pain. I wish I could share it with him, but I can't really - not in any way other than to stand in the sidelines, hold his hand, and watch him suffer. I HATE THIS DISEASE. I guess I'm just a little emotional right now - I am 30 years old, and I feel like our happy life is over, that from now on, we will just have to endure life, rather than enjoy it. I'm trying to have more faith - believe that things will get better, and that we will grow stronger, and more capable of dealing with these situations, but sometimes, it is all just so overwhelming, so unbearable.

Sorry for the drama. I'll try to be more patient, and give Remicade the time it needs to help my husband. I am so hoping that the remicade will get him to remission and keep him there for a good long time, and that he can get off the steroids (I don't even know if they are helping).

Thanks for letting me vent a little. Once again, sorry for the little outburst.
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff
Currently in hospital for past month
Canasa, Lialda, Vancomycin, Colestipol, Elavil, IV Solumedrol 120mgs, Remicade (1st infusion April 10, 2008), FloraQ, FloraStor, Morphine Time release for pain


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 4/22/2008 1:03 PM (GMT -7)   
Please don't feel like your life is over! I started having symptoms in 2003 when I was 29 and it came full blown at the end of 2004, which was when I started remicade. We (my husband and I , and our 2 toddlers) had to go live with my parents for a few months. But I have steadly gotten better and better. It took me probably a good year to get back to total normal. I have worked part time for the last two years. I work out 3-4 times a week. And I can eat whatever I want. Honestly, life couldn't be better right now. I'm happier and more content than I have every been in part to not taking for granted the little things in life, and enjoying every "feel good" day to the fullest. So, hold on to whatever hope you have, and do what you have to do to get through this time.
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