New Here! Help Please!

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Lil1EB81
New Member


Date Joined Oct 2007
Total Posts : 13
   Posted 10/29/2007 8:29 AM (GMT -7)   
Hi all, I am new here, but not at all new to crohn's.  I was diagnosed on my birthday 7 years ago, and am having my second illeosecal resection in 2 years next month.  I also tested positive for having the HLA b27 gene linked to Ankylosing Spondyllitis.  Anywho, I have tried all the medicines but remicade.  (prednisone,asacol,entocort,imuran...yadayada)  for the second time since Cd diagnosis, my weight dropped below 80lbs this summer.  I have been able thru many many large mcdonald milk shakes to get my weight up to between 85 and 90lbs depending on how much water i am retaining due to chronic dehydration and malnutirion.  I had to get my weight up to have this surgery because as my weight dipps below 85 (apparently for me some magic number) my blood pressure falls to like 6o something over 40- my last endoscopy and colonoscopy I wasn't able to be sedated at all- that was fun- but basically, i am truely scared of the major side effects w/ cade, and I am not sure I am finding all the "negative stuff" I am worried about, and want to make the best educated decision that I can.  One of my many gasto's over the years will not even perscribe the stuff anymore.  My rheumy has had cancerous tumors, lymphoma, and crazy stuff w/ some of his other pts-and hates the med now.  My liver enzymes, creatinine and serum porteins are all out of whack- help help- tell me your stories! plus my husband's father and aunt both died of lupus- so the "lupus like/diagnosed lupus" stuff is terrifying him and I!

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 10/29/2007 8:36 AM (GMT -7)   
Well if you're already scheduled for a resection in 2 months, why would you go on the Remicade now? I would ask about TPN to get your weight up prior to surgery. We're only talking short term here. I did it years ago, and it worked well along with many tolerable snacks (like your McD's milkshake). I went from 86 lbs. to 110 lbs. in a matter of weeks. It enabled me to have my surgery.
Judy
49 years old, Crohn's Disease   
Six resection surgeries, permanent ostomy, adverse reactions to Remicadeback on 6MP for maintenance, hoping for a long remission from this last surgery. 
 
 


Lil1EB81
New Member


Date Joined Oct 2007
Total Posts : 13
   Posted 10/29/2007 8:40 AM (GMT -7)   
oh- the remicade would be after surgery- forgot to mention that!  My current gastro feels it is ti,e to go that route.  As far as the TPN- none of my docs mentioned that- should i bring it up? 

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 10/29/2007 8:51 AM (GMT -7)   
Well, just because the medications like 6MP, Imuran didn't work before, doesn't mean they won't be a good option for maintenance. Sometimes, the disease is just too far along for the meds to work, but they could work for preventing future flares. 6MP never worked for me while I was in a full flare, at least not unless I was also on Remicade, but I'm back on it for maintenance. I would not take Remicade for maintenance, but I've had serum sickness to it.

As far as the TPN, it wouldn't hurt to bring it up with your doctor. I know they try to stay away from it these days because of potential liver problems with long term use, but you would only need it for a short time to get your weight up to a safe level for surgry.
Judy
49 years old, Crohn's Disease   
Six resection surgeries, permanent ostomy, adverse reactions to Remicadeback on 6MP for maintenance, hoping for a long remission from this last surgery. 
 
 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/29/2007 9:32 AM (GMT -7)   
Hi Lil Ensure and boost have the good nutrients and vitties that shakes don't but shakes taste great. I grew to love the ensure plus after a few days being on it. I find when I am sick nothing taste great. I also loved the creamed soups for taste enen if I had to strain out the mushrooms. O also ate loads of jello. You need protien too , to build your body and strength. I would put extra powered milk in stuff for added protien. I used to eat french toast and syrup which I loved. Right now you need to think about getting your weight up and worry later about the med thing as Judy said maybe the meds will work but I suppose the Dr. needs to know if Rem. is fiesable for you. I understand your worries about meds have you tried LDN some people on here are on it. Keep in touch and let us know how you are doing on the weight gain, stay in touch. lol gail
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