At what point should one consider surgery?

Hey everyone,

I hope your week is going better than mine :) Apologies in advance for this lengthy post. I rarely post on here, but I'm feeling in a good deal of pain and could use some support.

I've been dealing with UC for about 7 years now. Originally it was proctitis but it did seem to become left sided at one point, although it's usually rectal. I generally do "OK". On more "normal" days, I have more solid stool, somedays no blood for a while, and then usually it'll come up for a week or so once every couple months - where i'll have blood. I almost always have mucus.

A couple years ago when i quit smoking i had the worst flare and was bed ridden for a couple weeks. I got it under control going on prednisone and then remicade. I think the remicade didn't do much because i stayed on it until this past december, and in terms of being 'symptom free' I was not - i still had my occasional bouts of blood and mucus and urgency here and there along with some really off days.

Couple weeks ago i had an upper respiratory infection and Strep. They put me on penicillin. Shortly before this i was going through one of these 'bloody' episodes where i'll have blood for a week or two. But with the penicillin on top of it, i was feeling more pain than usual. I asked my regular doctor if i could stop it and i did. However, the past week i've noticed an increase in rectal pain, especially when i go to the bathroom. Trying to pass a bowel movement is unbearable the past few days. It's not a sharp pain, it feels like an amazingly intense pressure and my muscles spasm. I almost want to cry.

I've dealt with hemorrhoids and have some prolapse that i think is a result of how frequent/painful the 2 week flare up was a couple years ago. At this point, I'm not sure if i'm dealing with a fissure, proctitis, a hemorrhoid or what.

I recently found out my hair stylist that I started seeing (just moved to Baltimore), has UC. I never met anyone personally so this was pretty comforting. She is on remicade although her symptoms are worse. It turns out she is having surgery in a few weeks and is getting a j-pouch done. She's scared, but I'm hopeful because i think she'll feel much better and have her life back afterwards. But I hear how bad she is and realize that I guess surgery's not something i should consider.

But then when i deal with days like today, where i had to leave work early since i had to hold back screaming out while using the restroom (and don't want to make a scene in the men's room), I have to wonder what the heck is up.

I've been taking steroid suppositories nightly for a month now and even started trying the mesalamine enemas since my doctor recommended trying that (i just hate enemas, but have been doing that the past few nights). I got in touch with my doctor and he's going to do a rectal exam first thing tomorrow morning so I am happy that we'll at least see what's up.

I guess I'm just frustrated. I hate dealing with pain and i hate this back and forth cycle. What's worse is that it's not usually "really bad" or "really good', it's usually "so so".

In a nut shell it's all about quality of life. If yours is compromised because of your UC and you tried all the meds you are willing to try and they haven't worked, then perhaps it's time to consider surgery.

I was going to the bathroom 20-30x a day, in and out of the hosptial, anemic, housebound because of accidents, not being able to care for my family, and I went thru the whole laundry list of drugs. For me it was a no brainer at the end to have surgery. I love my j pouch....it's given me my life back litterally.

It's just something you know in heart when it's time and you will know when you have had enough. I still remember waking up one morning and knowing I couldn't take another minute of this stupid disease.

Tough decisions, especially if you are "so so" like you stated. Best of luck to you.

Thanks everyone for the kind words. It's just been one of those days and it is something I do think about from time to time. Just the 'what if' side of me. I'll wait to see what my doc says after tomorrow's scope.

Steve 246, my son's 21, he's not too bad at the moment but his life is compromised because he always has to be near a loo. He has AS too, like you. Are you now taking the remicade for the AS? How is the j-pouch? Thanks

Just thought I'd post an update. I've been posting more frequently on the ostomy forum (will get to that in a bit). It's amazing how things can turn for the worse in such a short period of time.

It turned out the medication wasn't doing much for me. I had a colonoscopy scheduled for the 9th, but I was losing weight, and having difficulty eating food. The weeks up to my colonoscopy were becoming increasingly more painful to the point my entire abdomen felt on fire. My doctor put me on a short week cycle of steroids with hope that it would help until we got a scope done.

The day of my prep I ended up becoming severely dehydrated and ended up stumbling to my neighbors asking them to call 911 since I was so out of it that I could not even handle using a phone myself. I ended up passing out on their doorstep after asking them to call and came to throwing up the prep and crapped my pants in the process.

I ended up in the ER and long story short it turned into a 10 day hospital stay. They put me on 100 mg steroids and it was still slow to get my flare to subside even a little bit. I also got back on remicade since we are thinking that was actually helping.

I couldn't eat anything while at the hospital due to the pain and continued blood. Strangely enough, I am still not anemic. I finally got discharged this past Wednesday and have a TPN line that is giving me nutrients via IV daily so that my gut could get some rest. On 60 mg prednisone as well and due for my second infusion of remicade in a week.

The cramping and blood is going down, although it's very slow going. I can't really take in anything and have to really slowly introduce stuff. Even just chicken broth. It's kind of a 2 steps forward, 1 step back process.

I am in good spirits though all things considered. The doc did manage to do a scope while I was in the hospital and it looked like it's left sided UC now with severe inflammation. The pain after the colonoscopy was excrutiating and I had to be put on demoral for a bit.

This has been one heck of an experience to say the least. I'm 31 and never broke a bone or anything. The longest I was in a hospital was a few hours due to food poisoning so yeah, definitely a wake up call.

I have started to schedule surgery consults. I am going to go see Dr. remzi in October at the Cleveland Clinic. I used to be extremely fearful of the idea of surgery, but after having gone through this I am excited at the prospect of getting to a healthier place in life and having a new normal. Im sure the journey won't be easy but I just don't want to land up in the hospital for so long again and be out of work for weeks at random again.

What's also crazy is I've lost almost 40 lbs in 4 months. So clearly the disease is doing a number on me. Never experienced a flare like this in my 8 years since having it.

Post Edited (tiesto81) : 6/22/2013 3:19:31 PM (GMT-6)

Thanks. I have considered cigarette treatment. I am an ex smoker and feel it helped with my symptoms although even when I was a pack a day smoker I still had horrible urgency and bloody diarrhea. I quit smoking 2 years ago when I had the first real bad flare, knowing that's what caused it. I have since smoked ecigs for the past couple years at 15-30mg per day. I think the ecigs help a little, although not to the degree that normal cigarettes did.

I'm hesitant to reintroduce real cigarettes given they never put me in full remission and the chances that they will cause worse symptoms for my flare if I try to come off of them. I also don't want to exchange one set of health issues for another. I know if I'd start smoking I'd quickly be back to a pack a day.

Keep fighting for your colon, you never know if one day there is a cure/new treatment. Unless you're bleeding pools of blood per day/20-40 times a day...darn.. then yeah, I'd cut that crap out.

I happened to be a "try everything under the sun" guy (and then some) before surgery, and indeed i did. However, having been a kicking and screaming before ever even seeing a surgeon person once, I have since changed my mind somewhat after surgery,as life is sooooo much better now- surgery really was not the big deal I feared it would be, but rather was just a few challenging weeks of initial recovery followed by a rather smooth entry into a high, rather normal quality of life without UC.

Still, since I didnt know that at the time, I don't regret trying lots of things ove many years- but by the same token, it is an extremely personal decision and part if me now admires those who have the courage to just skip years of nonsense. Even if the annually touted wonder cure is found in a year I wont regret gaining a year of good health, as my remaining 50 years or so (if lucky) of life without a colon are a very minor inconvenience. Hands down, trying the big gun meds and some basic dietary changes are prudent things to try before making the big jump though, but still, I don't think it is any sort of existential tragedy to jump straight to surgery, because life without a colon is for most the same QOL that a normie lives with a colon. However, a small minority of all surgeries do result in QOL reducing issues vs a normie (if not necessarily vs UC) and one should exhaust researching the pros/cons/risks of each type of surgery, viewed in conjunction with ones lifestyle, and only get surgery from a highly experienced, but also up to date with modern lapro techniques- surgeon.

Post Edited (Probiotic) : 6/23/2013 1:10:03 PM (GMT-6)

tiesto81,
The odds are definitely in your favor. If you go in for surgery, you will do great. Having a positive attitude....and you have one....is a huge help. Do not go in feeling defeated. It's actually the opposite. You are going to be done with the stupid disease for good and you won't have to take drugs, limit your diet, be in pain, ect. ever again. I feel bad for these guys saying they took up smoking again to relieve their symptoms. That's just not good no matter how it tries to be justified. Anyway, just wanted to send some positive vibes your way. I remember the feeling all to well when I was facing surgery. I wish I had found the support sites before my surgery but I didn't discover them until afterwards. It would have been nice to have people who have been through it telling me it was going to be OK. :)

I want to second everything byebyeuc said.
It is not a loss surgery is a win. Literally kicking uc to the curb!
The younger you are the better, and the better shape you are in willmake a difference too. Work on your core, get it strong before surgery.
As for a cure, 6 years when I went into surgery I worried there might be a cure around the corner. 14 years ago when I got sick I thought there's a cure right around the corner. There's no cure other thank cutting that thing out! It didn't want me, so why would I want it?
Good luck!

i would wait for a good sale -

Someone on here, and it's probably someone who has already posted in this thread, once wrote something that really really helped me with this question. They said, "You don't come to surgery, surgery comes to you." They said that when you're first diagnosed, you will do anything to avoid surgery, and then gradually, over time, the idea starts to seem less and less foreign and more and more like a realistic outcome. They said, when that happens, you're not forcing it. You're evolving into your decision.

I wonder myself from time to time whether I should consider surgery, and I always come back to those words of wisdom. They allow me to think about the option with a lot of space around it, rather than feeling like I'm being pushed into a corner or like maybe I'm avoiding an obvious answer.

Whoever it was that said that -- thank you. You've been a quiet, calming presence in my mind for a long time now.

Someone on here, and it's probably someone who has already posted in this thread, once wrote something that really really helped me with this question. They said, "You don't come to surgery, surgery comes to you." They said that when you're first diagnosed, you will do anything to avoid surgery, and then gradually, over time, the idea starts to seem less and less foreign and more and more like a realistic outcome. They said, when that happens, you're not forcing it. You're evolving into your decision.

I wonder myself from time to time whether I should consider surgery, and I always come back to those words of wisdom. They allow me to think about the option with a lot of space around it, rather than feeling like I'm being pushed into a corner or like maybe I'm avoiding an obvious answer.

Whoever it was that said that -- thank you. You've been a quiet, calming presence in my mind for a long time now"

wHAHAHAHA, I wrote that. I'm full of wisdom my friend. Always read my posts, they speak of truth and common sense.

The point of ""You don't come to surgery, surgery comes to you." is that in the beginning, you have the energy to fight it, but the disease wears on and wears on and wears on you, till at a point where you don't give a f... anymore. The time period will vary from person to person.

So when someone asks: Am I ready for surgery? Well, you're not really. When the surgery time has come, you'll not be asking this question. When someone has had enough, they will not be asking the question. It will happen. At that point surgery has found you.