Hi Friends. I have had a horrible summer and am hoping there is some end in sight that does not involve surgery. In May I had an allergic reaction to Humira, went on prednisone for 2 months, and started Stellara at the end of June. I developed awful mouth ulcers when on the prednisone that went away by the end of July, but made it very difficult to eat and all in all I have lost close to 20 pounds since May (down to 105 lbs). All summer I have been expressing concerns to my GI about the mouth ulcers and weight loss and resulting symptoms such as fatigue, stomach pain, leg swelling, headaches, etc. He kept pushing an MRI and waiting to see if the Stellara kicks in. Fine, but I was so sick feeling at the time that I felt literally unable to complete the MRI due to the drinks. I was super nauseas and food/liquids were running right through me. I kept explaining this to him and he just kept pushing it. In the meantime he gave me some zofran and refused to prescribe any pain medications for fear they would make things worse. He also kept giving us the run-around regarding my weight - refusing to commit to a definite weight where TPN would be necessary and frequently referring back to the MRI, as if that would change any treatment route?
Eventually I had had enough and went to the ER. My husband called him (and had been on the phone with him almost daily) and told him we were going for pain relief and fluids. At first he was kind of just like, "OK, good luck" but did actually end up calling the ER doctor and suggesting I be admitted for fluids and pain relief. He was also very engaged the whole time I was in there, touching base with me and the hospital doctors (one being an on-call GI from his hospital) several times a day over the phone. Once in the hosptial I had a CT scan that showed significant inflammation in my colon and small bowel (the colon being new, I have never had Crohn's there before) and possible areas of stricturing or fistulae (apparently these things are hard to see) - pretty basic for me by the time I get sick enough to go to the hospital and get a scan. I spent a week in-patient on antibiotics, pain meds, and TPN. Was sent home on TPN Wednesday and my general practitioner prescribed me a Fentantly patch and oxycodone for pain relief (of which I will absolutely only take for one month, I do not want to be on opiates long term). My surgeon wants to avoid surgery and says I'm too sick to have it done either way.
I am so disheartened. I have been sick and basically bed-bound all summer. And while I do have the TPN and pain meds to make things a little more bearable now, it's much of the same with no real end in sight. Is it possible that the Stellara will kick in after 2 months? Are there many of you who have had to quit your job and radically change your lifestyle at my age (33)? I have a full time job in a career that took a lot of schooling for and I feel like it would be a HUGE adjustment to transition to a stay-at-home Mom with no work (besides, I have one son who is 6 and in school all day). Are many of you on long-term pain relief medications for Crohn's? My personal choice has always been to only use an needed when things get really bad, but lately 3-4 hours of pain relief from a percocet is not cutting it and feel like I need 3x what someone my size would need.
I also probably need to start looking for a new GI, which feels like a divorce for me. I have been with this GI since the beginning, but he is getting older and just doesn't seem as involved as he once was. I need a more aggressive doctor that takes things on as soon as new symptoms arise.
I'm sorry, this has turned into a vent, when really I was hoping to get some reassurance that I can be this sick right now and get better without any drastic interventions. I think I scare my family, they would prefer me to stay home and rest, quit my job, take any drugs that make me feel better, stop worrying . . . .
Thank you for any input.