Surgery

Well, surgery scheduled for Wednesday. Tried two remi infusions one week apart with no improvement. Required two blood transfusions. Steroids not helping. They offered cyclosporine, but nervous about the s/e plus being more immunosuppressed with Covid spreading. I feel like I’m making the right choice moving forward with the surgery. Still not sure if I’ll be a candidate for the pouch. They want to see what pathology says after colon comes out, to make sure I Don’t have Crohn’s colitis. I’m already at peace with a permanent ileo if it comes to that. All that matters to me is being healthy for my family!

Oh wow, that's soon. I can tell you, I had surgery, and I've never looked back. I think that's the common case. Of course here on the internet, there are a lot of people who have had problems, but for me, it's night and day. I go more now, but it's not a hindrance on my life overall. I can do anything. You need to do what's right for you and you sound confident that you're ready for a change. I really hope you have a fantastic result and that you're the perfect candidate for a pouch.

Thanks NSSG, I’m pretty sure I’m going to feel the same as you. Yeah the negative experiences are obviously more commonly broadcast on the internet, but it sounds like most people are doing very well and living their lives. I’ll still hop on here from time to time to hopefully share my positive experience to give people hope. Even if I end up with a permanent ileo, not the end of the world. At least it’s not a terminal condition!

Good luck. Thankfully I’m not at the stage of having to go down the surgery way as pretty much all the time Pred puts me in remission and I respond well to meds. My issue now is my flares keep coming back to frequently and I’m having to rely on Pred, hence why I’m now going down the biologics route to try and keep me in remission long term. If meds offer no relief or rest bite , then you literally have no other option but the surgery route.

ks1905 said...
You will feel so much better after you wake up from the surgery. I told my GI that I was being poison from the inside and he said that one of his patients joked that they removed the monster for his body.

Some surgeons will do jpouches for patients with an inconclusive diagnosis.

I’m actually looking forward to it! Yeah hopefully the pouch works out, if not I’ll adjust to the ileo I’m sure.

They don’t want to try Xeljanz so close to the remicade doses, and my UC is pretty severe at this point so just needs to come out. Can’t really afford to keep waiting at this stage to see if a different drug will work. I’m perfectly ok with that. I’ll be happy with being off meds in the near future!

That makes sense. Let us know how the surgery goes when you can.

Definitely come back and let us know how you are when you're up to it. What time is the surgery tomorrow? Are you prepping? I agree with Keith, you can request samples from all of the vendors once you're well enough to do so, it's good to have supplies on-hand. My hospital gave me a kit and showed me how to use it. I also had a home health nurse who came a few times after surgery. She helped me learn how to work with the supplies and the ostomy in general. Waking up with the ostomy is a bit shocking, especially because you're not instantly comfortable working with it, but you learn it quickly. It's easy and pretty much foolproof. Let us know if we can help with anything. The one thing about surgery that's great is that you don't really feel like a chronically ill person anymore after. I don't anyway. I know some people have complications but many people don't. I live very normally now. No drugs, no doctors... No worrying about toilets or scheduling appointments for flare-ups or infusion administration. It sounds like a good decision for you since you haven't had much luck with drugs. Going into it sooner while on less drugs is never a bad idea. Good luck!

Best wishes for a speedy recovery!!

I hope everything goes well. I was doing best when I had my end ileostomy. It's not that bad at all. Sometimes I forgot it was even there.

My favorite trick to sleeping in was putting on a new bag right before bed so the filter is new and the bag didn't bloat up and I was able to sleep as long as I wanted. The other nights I had to burp the bag. Sometimes you have to do so carefully or you'll have a mess. I just wanted to share this before I forget.

Let me know when you find out the details. I prepped with prepopik. It was easy.

I used to shower with mine on and off - really depends. Usually, with my end, it was very slow in the AM. By the end of a night of sleep, I would not have much so far as output and I could shower with it off. it was also a good time to change the bag on the days I needed to do so. With my end, I only changed once every 7 days or so. I could even go longer if I wanted. I would often use 2-piece systems. If you use 2-piece, you can change the bag without changing the wafer... I would switch the bag if I wanted a new one and not worry about changing the wafer. Changing the wafer with my end was easy too. I didn't need any special supplies. No paste, no special products. I had the most simple set up. I hope yours is easy. I didn't have a stealthbelt but I did have a few ostomy wraps. I loved those for wearing under fitted clothes. They basically hold the bag right up against you so it doesn't move around. It's good for sports, or just for everyday wear. High waisted underwear can be good too. You can tuck it in. I would wear tight-fitting clothes and no one would know it was there. Andrina is right though, when the bag fills with air, it can be tough to remediate. Trying to eliminate the air without opening the whole thing is always a risk. You learn tricks over time and get better at it.

Surgery done! Like others have mentioned, it’s true that I can actually feel the monster is out. I keep worrying as I lay here in bed about getting up (I’m still fairly fresh postop) about having to get up frequently to poop bloody sludge, but oh yeah that part is out. Foley is in so the other side is taken care of. Can just focus on sleep tonight.i tried to cough a little bit earlier, even with using a blanket as a support, holy crap. Otherwise pain is honestly not too bad. Surgeon said colon looked pretty bad. Time to get some healing rest, thx everyone!

sevodreams said...
Surgery done! Like others have mentioned, it’s true that I can actually feel the monster is out. I keep worrying as I lay here in bed about getting up (I’m still fairly fresh postop) about having to get up frequently to poop bloody sludge, but oh yeah that part is out. Foley is in so the other side is taken care of. Can just focus on sleep tonight.i tried to cough a little bit earlier, even with using a blanket as a support, holy crap. Otherwise pain is honestly not too bad. Surgeon said colon looked pretty bad. Time to get some healing rest, thx everyone!

Glad to hear it went well. I thought about you today. I hope you have a speedy and smooth recovery.

Hey! Thanks for checking in. I wish you the best in your recovery. The couching and sneezing is the WORST for a few days. Things do happen quickly though. I remember the first few days, just getting up was tough, After that it gets easier much faster.I am thinking about you.