Severe Crohn's Disease - is it just me or do others experience this?

[BigBoss]

I have a severe case of crohn's disease. My question is, has anyone else with a severe case of crohn's noticed that even after a resection and or taking a medication such as remicade or any med for Crohn's for that matter, do you still feel some of or all of the same symptoms that were present prior to any surgeries or medications? I had a resction about 7wks ago and I actually felt good for a month. Then i slowly felt myself drifting back to that old familiar feeling. I feel feverish, no fever. Feeling nauseous. Having tremendous bouts of D, sometimes 20x a day, less lately just cause i am afraid to eat and havent been eating as much. My stomach pains are slowly returning, lower right, lower left, and at the resction or surgery site, especially after I eat I notice more pain. I also have fistulas that have become active again, and also had a seton placed to help 1, another surgically removed and the 3rd is hopefully going to be healed with remocade treatment, which i restarted 2 days ago. My gi was super hopeful that because all the problems that were occuring internally with my small intestine, bladder and colon were removed and/or repaired, that remicade would really help. But i am skeptical, because when i would get the treatments prior to surgery, it would really bother my stomach during, I would also have to use the bathroom during treatment, and following treatment i would feel terrible and just crawl into bed. This newest treatment was no different and that has me worried. I guess im just curious if others have had similar experiences where it seems like nothing has really seemed to help. I was dx in '12, but thinking back, i def began to have symptoms in '10 if not '09. I was having trouble eating, feeling nauseous when it came time to eat, and the only way I was able to eat, was to eat like half a marijuana cookie 30-45mins before dinner, and the nausea would subside, i would have an appetite and also be able to eat. It would help now as well, but because the pain management clinic says i cant use marijuana, have had to stop that altogether. The pain meds ultimately help overall much better for my overall feeling better throughout the day. Sometimes i wonder if its all in my head or maybe im the only one who doesnt respond to the treatments or medications out there, even if im not, i just dont understand why my body is doing this. I get aches and pain in my hands and feet, wrists, ankles, knees, and hips. Oh, yeah, and theres fatigue to the point that I literally dont get out of bed or leave the house unless I absolutely have too, i.e.-dr appt, work etc. But i have ZERO social life and I feel like im straigjt up dying.Does anyone else experience similar symptoms with treatments having little to no effect over a long period of time? Thank you for taking the time to read this.

 

[ronroush7]

I had a resection in April of 2010. In either June or July' I had some Crohn's symptoms.

 

[ronroush7]

Make sure that the doctor checks you for antibodies before restarting Remicade.

 

[ronroush7]

I read again and see that you already started the Remicade again. Best to you.

 

[Justanothercp]

I have had a resection, symptoms never fully went away. I've been on remicade, budesonide, and Lialda since, still symptoms exist.
I just manage day by day, good days and bad days.

 

[irishgal]

I wasn't quite as severe as you were, but I had certainly failed all treatments and always felt like the treatments weren't getting to the heart of my problem. Good days, bad days, good years, bad years, but I never gained weight and my blood levels were always all over the place, so I knew the treatments weren't doing much. I had this for 20+ years, so finally I had failed everything and was super sick, like what you're describing. I could barely function and I was afraid to leave the house. I researched and found AMAT, and figured why not! I had nothing left. Better in 6 weeks, remission in 3-4 months so good it's like I've never had Crohn's. If you want to get tested for MAPish, the bacteria they think was at work in my case, I can help you. The guy is in New Zealand. He cares about his patients and is fair and smart. Wishing you some relief. It's horrible disease that none of us should have to suffer. Healing and hugs to you.