Hey everyone, feeling extremely discouraged. I had a fairly inolved resection 6 months ago and I have been feeling like my disease is still active even though all my numbers from blood tests show no active inflammation, had an mri 3 months ago and no signs of inflammation either. Have been experiencing nonstop pain, as well as nonstop diarhea, unbelievably extreme fatigue. Plus the freaking pain management docs have me thinking it is in my head and using the "theres no signs of active inflammation", well Ihad a colonoscopy last week, and in a way, I am relieved that my g.i. doc came back with bad news, there are already 4 areas of ulcers starting to accumulate. I am not necessarily happy that my disease is returning, in fact it is somewhat crushing, but on the other hand I have to say that the reason Iam relieved is because, Ihave just been feeling like I am going crazy and tha this has all just been in my head. On the other hand, I am also super discouraged, as the remicade has not been able to work, and the surgery supposedly removed all of the diseased tissue, then I was switched to humira following my surgery, and it seems like nothing is slowing this monster down. I know the pain, discomfort, fatigue are not figments of my imagination. The fact that I am taking pain meds as well as wearing fent patches is scary as it helps extremely but the amount the pain docs feel is adequate, definitely doesnt seem to be able to keep my pain levels under control. Iam more than aware of all the reasons for why these docs feel the way they do, but I now that my happiness and qol is also important to me, but because I was honest with them about how Iwas abusing pain meds before my surgery,they have me labeled as someone with addictive qualities. Iam not disputing that I may have addictive issues, but Iam not looking for a high, nor was I prior to my surgery. I was just in a lot of pain having 2 internal fistulas, 1 large abscess pressing on my bladder, and 2 feet of almost completely closed off intestines, I am not taking nearly as much pain meds as I was prior to surgery, but my body feels like it is dying. I want to give up at times. All of my g.i. visits up until this most recent colonoscopy, my doc is always upbeat and telling me to look at all the positive things that are going for me in life, and when she had to come give me the "bad" news about all the new ulcers, i could tell she was not happy, she looked depressed for me, cuz I think she knows that the disease is pretty agressive in its attempt to consume me. I am pressing on and trying to figure things out, I just have a hard time eing able to find a way to see a real future for myself. Iam 37 and I really don't see being able to have a social life at all. If it wasnt for my own personal experience in grief and losing brothers in life, and me having younger brother, I find myself wishing that I could be put out of my misery, and asking myself "what is the point"....
thanks to those of you that took the time to read my drawn out story.
thanks to those of you that took the time to read my drawn out story.
