I'll echo that your experience sounds similar to mine... I even started blogging a few weeks before I decided on surgery.
I'll excerpt the parts I feel qualified to respond to...
minners said...
“Why don’t you just have the surgery?” —– A question I’m asked all too often. I try to answer questions like this as nicely as possible as I know the asker intends no offence. But it does cause offence. That short question likens the surgery to a basic dental procedure – in and out before you know it and back to normal.
Yay, I get to ask the question without causing offense because I know how fracking hard it is!!
minners said...
In short, the surgery is a 1-2 year process consisting of three major surgeries. The first step is to remove the entire colon, which would leave me with an ostomy bag. The recovery is long and hard and dealing with the emotional aspects of having an ostomy bag makes it even more unappealing.
OK, so, let's not catastrophize too much. I was about
as sick as a person can be going into elective surgery (on methotrexate, double dose Remicade, and high dose prednisone, plus universal severe pancolitis), and I've still gotten the whole process done in 6.5 months (pending takedown in exactly three days). Until you consult with a surgeon you don't know if you're going to be having two steps or three. I would argue -- strongly, though NCOT will take the CON side I'm sure!! -- that the emotional aspects of an ostomy bag are NOTHING compared to the emotional aspects of constant unceasing pain, inability to socialize, eat, taking toxic medications, missing work, incontinence, etc. That's just me, but if you lurk on over to the Ostomies board, you'll see the bag is usually seen as more of a welcome respite from being stuck in the loo all day every day. Two steppers usually take a harsher view on the ostomy because they only ever get the "loop" ileostomy, which is harder to manage. As a three stepper, I can tell you that my end ileostomy was a-maze-balls. Compared to living with UC, the "emotional aspect" of my first ileostomy was (I seriously said this to my therapist once) "I don't know how to express how happy I am."
minners said...
As long as my UC doesn’t turn out to be Crohn’s Disease (which is a possibility as they are still not definite of my exact diagnosis), I would then be able to have the bag reversed over the next two surgeries. This entails creating an internal pouch (called a J-pouch) using the small intestine. After the surgery, you are not fully ‘normal’ for up to 5-10 years, if even.
Again, slow your roll. If you mean the normal of a person with a colon, one formed BM a day, that ship has sailed. If you mean the normal ideal j-pouch outcome -- 4-6 soft BMs per day without pain or urgency -- that's typically realized within 6-12 months, and often sooner.
minners said...
There are, (of course!) risks with not only the surgeries but also the newly-created J-pouch (infections, inflammation of the pouch etc). As well as this, the scarring left by the surgery leaves a lot of internal scarring – resulting in most women being unable to conceive afterwards.
Horrifyingly misinformed. Scar tissue from j-pouch surgeries can somewhat decrease
fecundity, meaning likelihood of getting pregnant through unprotected intercourse, but the latest data suggest that it has little effect on
fertility, which is the likelihood of getting pregnant, period. In other words, you might not do it "the old fashioned way," but if you're willing to try IVF, you are still likely to get pregnant. If you have plans to have a child, many surgeons will further improve your chances by performing Step 1 (colectomy with ileostomy), then you get pregnant and have a baby, and THEN you complete your j-pouch surgeries. It is 100% OK to have a pregnancy with an ostomy and this minimizes the number of surgeries pre-pregnancy and therefore scar tissue and therefore fertility loss. In any event, I hate to be blunt, but in an active flare with medically refractory pancolitis you are FAR less likely to get pregnant and carry your pregnancy to term. Sure, the ideal situation is to be in remission and get pregnant, but that doesn't really seem to be on the table.
minners said...
So, as a twenty-four year old girl still trying to come to terms with this disease, that is a brief explanation of my reasoning behind not ‘just going for the surgery.’ By now, surgery is looking likely, but before it comes to that, I want to be sure that I have tried everything I can to combat this disease.
I hear you. I certainly did the same (tried everything). I can't say I regret it -- none of my meds seemed to cause lasting side effects (touch wood) and if I opted for surgery before trying, say, Remicade, I'd probably be sitting here shaking my fist at myself for not giving it a go. I just wanted to play devil's advocate a bit so that if and when surgery does become the next step for you it doesn't sound quite so bad.