Surgery last Monday. Should have done this years ago.

UC for 10 years. All the meds failed. Got way sick this year and decided for Step 1 of the J Pouch surgery.

The last week was a blur, thanks to modern medicine. No, seriously. Thanks modern medicine.

And after a couple of days wrapping my head around the ostomy and stoma, I finally am starting to trust the equipment. Until today I had been pouring all of the UC worry and attention onto the appliance but it's not necessary. These things are designed well and just work, if you do your part and put them on right.

And today I realized something as I sat here "recovering". I'm bored. All of the brain power in my life has been spent for a decade trying to cope and adjust and plan for my disease.

And I don't have to do that anymore. I am free.

I'm sure there will be complications and over time I'll forget just how all encompassing UC actually was, but right now the comparison is stark. I have my life back.

This is awesome.

Andy

The mental part is not a walk in the park.

While my doctors had never suggested surgery before, it was lingering over each successive medication failure. For the last year I could see where i was going, but had hope that it wouldn't get there. This year I went through Entivyo and then Xeljanz (which worked wonderfully for two months and then just stopped). By the time I was on Xeljanz, I knew I was on my last leg so I threw myself into exercise (swimming, biking and weights) during the remission to get ready for surgery.

I was in pretty bad shape before the Xeljanz reprieve so getting to feel healthy for a couple of months put a new piece on the table. Honestly I don't think any of the meds before it had really worked as well as I thought they did - Xeljanz set a new baseline. I got to see what "well" felt like.

When I declined again, I felt it a lot harder because of that. So there is the choice - Do you want to feel sick and look normal or look sick (privately) and feel normal?

That is what I say when anyone asks. The truth? I still recoil a bit when I look at the stoma. I've always been a highly confident person - and right now I am afraid to leave the house. My wife is amazingly supportive and I am buying several cover-up belts that look more like weight belts than anything ostomy related but everytime I start to think about intimacy, I balk. I know that over the next few months I'll be able to whip my body back into shape that it hasn't been in since I was in my 20s and I'm looking forward to being able to do that but it's a psychological blow everytime I see the bag hanging off of me. Why bother, you know?

But then yesterday the pain in the morning cleared by around noon and the output was steady and regular. I did my first complete "change out" of the unit and figured out it wasn't that complicated. And for about eight hours I kinda forgot the whole thing was there. Maybe once an hour I would remember and have a few bad minutes, but then my mind tracked off to other things. I can see in a month or so that will become more normal and it is going to be wonderful because UC isn't anything I'm worried about anymore.

I've clearly got some work cut out for me in adjusting and accepting this thing. But for right now I'm trying to separate the two. Because if I do that, my UC problem is over.

Such a wonderful post! I haven’t had surgery but I’m working on releasing some unrelated personal stress and it’s a huge weight off my shoulders to deal with this better. I’m not bored though, might be replacing that stress with UC stress. This is a good reminder to notice how much time this can take up. My symptoms aren’t that bad either. I’m so happy for you that feel bored and your self reflection is so positive! Thank you for this post

I totally understand how you feel about having much more time now. All of the time I spent worrying about UC, "can I do this or that", what's going to happen with my career, my future, my health, do I need a change of clothes, can I eat that, is it time for medication, can I afford more time and money, do I want to live my life like this?? All of it is gone. I spend almost no time focused on health issues these days - unless I am here offering advice to others. That said, surgery isn't always a great success and it carries risk, so I understand fighting to avoid it. I am happy things worked out how they did for me, but I wouldn't mind having never dealt with any of it!

Living with the stoma is pretty easy once you get used to it. Of course, it's not something any of us ever wished for, but it does work and the supplies are pretty foolproof. I also felt more capable with my stoma than I did with UC for many years prior. I felt stronger and less worried about "accidents". I was a little apprehensive about my stoma, especially at first, but it gets easier. After takedown, waking up without it, was a dream. How many steps are you having?

The icing on the cake, for me, is not spending so much money and thought on all the health nonsense. I would spend 1000s a year on appointments, tests, and drugs.

3 steps. Eight months or so between Step 1 and 2 to give things time to heal? They want to biopsy the colon to look for Chrohn's symptoms before we commit fully to the J pouch. I've had some mixed symptoms over the years.

For now, I'm ok with the uncertainty. Going to figure out this Ileostomy and thrive with it. Think I have been eating wrong for the last week or so. Still trying to eat three meals a day, largely of the same thing as before. Just spoke with the wound nurse that explained I am kinda starving myself and should eat a lot less, a lot more times a day. Like, every two hours. There is a lot to learn here.

I just wanted to leave a marker for anyone considering the surgery. No, it isn't wonderful. Yes - an ostomy does kinda suck at times. But it is not the end of the world and life goes on, in some ways for the better. I'm only a week out but I now know that I would and should have traded several of the last few years for the short term adjustment that is this.

Andrina said...
Remember surgery is not always a cure for auto immune disease

Are you speaking from personal experience? I see you have a j-pouch now. How's life been?

MarkWithIBD said...
Are you speaking from personal experience? I see you have a j-pouch now. How's life been?

Not good and I'm bitter

I was diagnosed with inflammatory arthritis and I'm still pooping my pants just like I did during my flare before surgery. My joints swell, have fever and pain. I will never be able to enjoy life again

Andrina said...

Not good and I'm bitter

I was diagnosed with inflammatory arthritis and I'm still pooping my pants just like I did during my flare before surgery. My joints swell, have fever and pain. I will never be able to enjoy life again

This sucks, and I'm sorry for you.

Andy you think like me.Once i knew UC wasnt going to get better i said LETS DO IT.I already had seen surgeons so it was just a phone call away.I was too sick to have any fear.Now life is good

I've had my J-pouch for 5 years...no regrets. Is it perfect, no (but what is)! It's a million times better than UC!

Like you, Andy, I was amazed at how quickly I was feeling better after the Step 1 Surgery. I found the ostomy a lot to wrap my head around at first, but I was amazed at how well I could do all the things I had given up on- shopping, eating out, visiting friends, long car trips, etc. I did not want to have it permanently, but I know if I have to go back to it I can and still live a great life. I recently met a 96 year old lady that has had an ostomy since 1966 and she's had an active and full life. Either way you go will be better than dealing with UC!

Well wishes on your recovery to a UC free life!

Andrina why do i get the feeling your depressed alot .My gastro[who i have had for 32 yrs] said the most powerful Med is between your ears.Not getting down on you but you need to be as positive as possible with this disease[not easy sometimes].You also need to get out of yourself as much as possible.Go volunteer at a hospital,anything to get out of our own head.It helped me . Andy i had surgery #1 Jan 9-2018,#2-April 9-18,#3-,August 21-18 i was done[or i thought].Last December i got out of shower and i was pregnant with a mouse[joke].I had an incisional hernia up high at top of my vertical incision.Too much lifting and eating [even though im 6'5-230].Im tall and slim but at 60yo you gain weight in your gut.So im letting my lift more and im eating less.Just relax and let your body heal.Did they cut u open vertically or horizontally???/

Also, Andrina -- you may have grounds for a law suit if your original surgeon refuses to help you when you are having problems. Talk with a medical malpractice attorney. It's insane that the surgeon refuses to see you when you need help.

You are a strong person (everyone who deals with this disease is pretty darned strong!). You can get through this!!!

Thanks Sara. That was the big reason I went from being a lurker here to finally posting. I had seen a lot of horror stories about the surgery and they freaked me out. I get it. In the years of battling UC the big, bad monster of surgery was always out there and I had it fixed in my mind as the ultimate defeat and end of my life. The negative posts didn't help.

I get for some people it doesn't work and that really, really sucks. For me, two weeks out my entire life has changed. I feel better than I have in years. The stoma/ostomy isn't really as bad as you think (it isn't great, but you adjust). I am eager to go back to work next week. I am eager to get medically cleared to start exercising again. Parts of my life that I had been struggling to keep up with I finally get to focus on. And I get to go back to being stable.

I saw someone say that the internet posters who tended to have bad surgeries and results are very vocal on message boards while the successes are out living their lives. It's probably a very fair observation. But I at least wanted to leave something here before my life gets away from me again and I disappear so people who eventually get forced all the way down the road to surgery can see and know. Get in as good physical shape as you can. Get your mind right. Accept what's happening and make the most of it. And know that while surgery is a "bad" final outcome (medical remission would have been so frekkin awesome, but it wasn't for me) that there is nothing that says it has to go bad. That's up to you.