u/magnoliophyte

I had surgery, a colectomy with an end ileostomy.

I've been home for just under 3 weeks now. My days are a mix of good and bad, mentally.

Today I can't help but hearing thoughts in my head asking if I could have tried more, if this was really the time.

I had UC for 10 years, diagnosed at 30, and I was never hospitalized for severe illness, just an odd ER visit here and there when my flares were really bad. Anyways, over those 10 years I was tried on Mesalamine, 6-MP, Humira, Entyvio, Skyrizi, Rinvoq, and Remicade, without ever having any kind of remission. The only relief I ever had was from taking prednisone. But I took prednisone for so long, so many tapers, that I experienced bone density loss. My healthcare providers' only 2 GI doctors both said it was unsafe to try me on anything else while doing these prednisone tapers, since I was taking it almost non-stop for so many years. If I didn't have at least 20mg/day, I had all the symptoms, especially bad in the rectum. The last 2 years especially became quite taxing on my body, with flares keeping me out of work at least 1/3rd the year.. straining our finances too.

Also, by the end, the 20mg/day wasn't even helping. I was having an uncontrolled flare and would have had to go back up on high doses again.

But now I'm sitting here, looking down at my ileostomy and thinking about how tomorrow the wound nurse visits to help me deal with some small leak issues I'm having.. my skin hurting, hoping I heal up right after all that pred exposure... and still just wondering if I should have done more.

No one can tell me that, I know the decision was mine.. this just feels like something on my chest and I don't know how to get it off.

40 years old, been an RN for 16 years or so. I was diagnosed with UC when I was 30. Failed lots of standard and biological meds, began suffering more side-effects of prednisone like osteoporosis and could not safely continue trying meds. Along the way, so many lost jobs, friendships, my physical and mental health pushed to the breaking point. I only made it to the day of my surgery and through the week because of the love of my life, my dear wife who has been with me for all of this (we celebrated our 10 year anniversary this year).

My surgery was fine, great in fact by most standards.. laparoscopic robots or whatever. I was only in the hospital for 5 days before I could go home and was able to move around pretty well already. I was a little standoffish with my stoma until our first 2 pouch changes together. I'm still working on a good way to empty right now with my impaired flexibility. (thus far I've been emptying in to those jugs from the hospital with the graduate markings, and pouring in to the toilet.. but getting the thicker stool out is still difficult for me.)

I've been finding my struggles are mainly mental. I knew more than most people what I was getting in to because of my medical background.. but even seeing other people with it your whole career and taking care of them and helping them with their stomas etc, cannot prepare you for having it yourself. Sometimes I just find myself getting really, really sad, and becoming afraid of things that haven't even happened yet (a leak at work, or in public etc... even at home in my bed, seems scary..). The acceptance comes fully in time, I'm sure, but right now I very much still just feel scared. Sometimes I just start crying unprompted, and have to basically talk sense in to myself that what was going on before, was unmanageable and certainly wasn't looking as good for me.

I hope that soon I find myself on the other side of whatever stages of acceptance have to happen.

It's agonizing. I'm still waiting on the insurance finalizing the prior auth.. (the clinic messed it up and had to resubmit twice), while my work leave is set at least.

It's been a long time coming. I was diagnosed 10 years ago, right around my 30th birthday. I knew from the first 2 meds I failed that I was likely in that category that'd need surgery sooner rather than later.

I'm not really sure any of the meds worked for me. Even when I had symptoms go away awhile on Entyvio, my blood and fecal markers for inflammation were insanely high. The disease wen from mild, to moderate, spread from my left side all the way to the ascending colon. I tried several biologics.. all the meanwhile, my body took beating after beating from months, then to years on Prednisone.. I needed it so bad, to keep my jobs as best I could.. even then, I had to leave 2 different jobs just from illness before I could even stay long enough to use benefits like FMLA.

As the idea that surgery was on the horizon loomed, they ordered a dexa scan for me and saw osteoporosis in my lumbar spine, and osteopenia in both femoral heads. I had 2 dental cavities show up just after, and a few attempts to wean me down below 15mg of pred resulted in horrible sickness and instant return of flare symptoms.

So after a bunch of red tape, I'm sitting here.. 7 days away.. waiting to see, and hope I have no more delays.

I went from dreading this, to begging for it. I'm done with all of this stuff being part of my life. I'm tired of the pain, not just the physical, but the mental pain of everything.. from insecurity, to feeling a tremendous loss of my agency. I think I only really made it through things without quitting my treatment altogether because of my wife. More than anything I want this to work for her sake, so we can stop spending so much of our time, energy and money on me, and make some more good memories while we can.

Hey.. so I've had constant issues with my UC for the last 10 years, failed multiple biologics, could never get fully off steroids for very long. Last 2 years have been in an almost non-stop pred tapers and med experiments. I've finally failed my "last" one, Remicade, and got referred out to a surgeon for a full colectomy and ileostomy.

I've long made my peace with it, and have had 2 appointments with the surgeon.. after explaining my case, he said that the first surgery, the full colectomy, would take place while i was still on a low dose of steroids to prevent a flare, wean off fully, and then have the option of the 2nd surgery.

It made sense to me, but my GI who referred me out was arguing with me today that she'd prefer I was off steroids for 4 weeks prior, and could just "deal with the symptoms" for that entire month. I've explained to her and she well knows that when I flare, I bleed non stop, can't eat, labs like platelets rbc's eosinophils etc go completely wacky, so on and so forth.. not to mention I can't really work while doing that, and would lose another month of pay on top of what I'll miss for the surgery.. I understand the part of the rationale that says even the dose I'm on (15 mg daily, about to go down to 10) affects healing.. but I'd just think a flare would be worse.

I know it's going to be up to the surgeon eventually and this stuff is highly personalized so no one can really give standard advice.. I guess I'm just really frustrated that it feels like I'm supposed to be at the end of all this, but my doctor and their office continue this really irritating habit of treating me like I don't work for a living.