I'm 32male diagnosed with Crohns about 8 years ago, mostly restricted to terminal ileum, IC valve, a little in cecum. GI just recommended elective resection surgery. I'm looking for advice on whether I should do this.
I have long standing and what apperas to be never changing 7inches of inflammed terminal ileum. last 2 colonsocpies were unable to cannulate the ileocecal valve as it was swollen shut both times, referred to as a "partial obstruction." MRI 2 years ago showed this inflammed segment, thickened. Treated with humira max dosage (1 shot per week) for at least the past year. Just had another MRI and NO CHANGE! grrrrrrrrrrrrrrrrrrr!
My symptoms, however, are not severe, at least the humira seems to keep them mostly in check. I do have flank tenderness, which I have had for years and years. It is uncomfortable to lie on my stomach, and sore to the touch and painful when pressed. I do get occasionally crampy pain, but very sporadically, and I do get some weird pinching feelings in that area and sharp pains out of nowhere. Fatigue, yes of course. I do get some nausea here and there. As for diarrhea, it does seem sensitive to what I eat. Where if i mess up I could have a rough 24 hours or so with many trips to the bathroom. But, I'm so used to coping with this that honestly it doesn't seem to get me down too much. I'm just used to low energy and stomach issues. Who doesn't have stomach issues? I think I do restrict some of my activities, e.g., it may make me nervous do things if i think i don't have a bathroom nearby. But, again, the pain I guess is moderate and I guess under control.
As for complications, I had one absecess a few years ago, high grade fever, liver inflammation. went away.
So, what do I do? I feel like I'm in a good place in my life to have this kind of surgery. And I like the idea of getting rid of this nasty tissue that just doesn't respond, and I really want to get off the humira (my GI said we would consider going back to something less agressive after the surgery). BUT, I admit that I don't suffer the severe symptoms that I know many people have (no weight loss, no vomitting). So should I wait for a complication or for more severe symptoms before going under the knife?
I really don't know what to do here. What I read suggests the approach of no surgery until last second, but some articles counsel against that, as it makes the surgery more difficult, more problems, etc., and that it can be better to do it elective when under control.
Your thoughts are greatly appreciated!
:depressed:
I have long standing and what apperas to be never changing 7inches of inflammed terminal ileum. last 2 colonsocpies were unable to cannulate the ileocecal valve as it was swollen shut both times, referred to as a "partial obstruction." MRI 2 years ago showed this inflammed segment, thickened. Treated with humira max dosage (1 shot per week) for at least the past year. Just had another MRI and NO CHANGE! grrrrrrrrrrrrrrrrrrr!
My symptoms, however, are not severe, at least the humira seems to keep them mostly in check. I do have flank tenderness, which I have had for years and years. It is uncomfortable to lie on my stomach, and sore to the touch and painful when pressed. I do get occasionally crampy pain, but very sporadically, and I do get some weird pinching feelings in that area and sharp pains out of nowhere. Fatigue, yes of course. I do get some nausea here and there. As for diarrhea, it does seem sensitive to what I eat. Where if i mess up I could have a rough 24 hours or so with many trips to the bathroom. But, I'm so used to coping with this that honestly it doesn't seem to get me down too much. I'm just used to low energy and stomach issues. Who doesn't have stomach issues? I think I do restrict some of my activities, e.g., it may make me nervous do things if i think i don't have a bathroom nearby. But, again, the pain I guess is moderate and I guess under control.
As for complications, I had one absecess a few years ago, high grade fever, liver inflammation. went away.
So, what do I do? I feel like I'm in a good place in my life to have this kind of surgery. And I like the idea of getting rid of this nasty tissue that just doesn't respond, and I really want to get off the humira (my GI said we would consider going back to something less agressive after the surgery). BUT, I admit that I don't suffer the severe symptoms that I know many people have (no weight loss, no vomitting). So should I wait for a complication or for more severe symptoms before going under the knife?
I really don't know what to do here. What I read suggests the approach of no surgery until last second, but some articles counsel against that, as it makes the surgery more difficult, more problems, etc., and that it can be better to do it elective when under control.
Your thoughts are greatly appreciated!
:depressed:
