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".

What solidified surgery for me was when I admitted that my quality of life was low. I wasn't severely ill but I couldn't commit to events, international travel, summer back pack trips etc. After 2.5 years of a low quality of life I opted for jpouch surgery. That was 12 years ago. I have spent the last very good 12 years, trying to make up for the 2.5 I lost. Life has been very very good post surgery; I have never regretted my decision.

Sue

I agree that at some point you have to be honest with yourself about what you want your quality of life to be.  There were periods of time in my 6 years of UC that I could actually convince myself that the UC would just go away.  But all the steriods, Remicade, Humira and rectal meds didn't make it go away and one day I just broke down and for the millionth time screamed  "I can't live like this anymore".  That last time I took myself seriously, went in to see my wonderful GI and said "I'm done" to which she replied, "It's about time". 

I am 5 months post surgery and I know this has been said over and over on this board, but I really did get my life back.  There really are many happy endings for most of us even with those bumps in the post surgical road.  I am extremely fortunate that for me, and thanks mostly to my amazing surgeon, I've had no complications with my permanent end ileostomy.  Quality of life......it's a big deal.

By the way, I attend an Ostomy Support group once a month and find that to be extremely helpful.  Nothing like having a fellow ostomite put their arm over your shoulders and say "Whatever you need, I'm there for you."

Only you will know when it is time for you to have surgery. My doctors had encouraged me for years, but I just wasn't ready. I have 4 active kids and a great husband, and I became a hermit. I didn't participate in anything for about 4 years due to bowel incontinence. I was miserable, but I wasn't going to give in! At one of my dr. appointments I just started crying...I had been fighting it for so long and it beat me. After I made that decision, I was a new person. I had surgery within 4 weeks, and while it is no piece of cake, I can live again! Only you will know when you reach that point.

scarytime said...
I’ve tried the pros and cons list but getting cold feet as the date looms ever closer. Any advice would be gratefully received.

I know the cold feet feeling all too well but my advice is just do it. You will be done and feeling good again, disease free and drug free. Since UC and CD are life sentences, chances are that the flare free moments will be fleeting ones.

And to the original post: If the meds failed and your quality of life is bad or you are just plain fed up with it all then it may be time for at least a surgery consult. Get your info and be prepared.

Scarytime, FWIW i have experienced the same jitters - my surgery is coming in a couple weeks for smewhat indeterminate UC and I actually cancelled and then rescheduled my surgery over the space of a few days. I actually envy those whose IBD never gave them a choice- facing the elective surgery decision is like chinese water torture that never ends until one day you just take control and pick your own terms. I am actually feeling physically good now after a weeklong flare that recently ended so I guess now I get to have the "jitters/should have I/could have I " thoughts bounce around again ... but I remind myself that surgery recovery is the good old fashioned way the body is supposed to heal, vs the neverending story of IBD inflammation that can rear its head anyplace, anytime without warning. Time for me to stop worrying and start living.

Post Edited (Probiotic) : 4/17/2013 5:13:22 PM (GMT-6)

Many thanks for all the advice. You really are a brilliant group. I know that its best to get it done while I'm in reasonably good health so no better time than now. When I was really ill I wouldn't consider having any surgery. Guess I'm just a little older and wiser now and realising that while I am wasting time hanging on to a rotten colon life is passing by. Just need to stop the doubts creeping in! 7 weeks to go!
Tiesto81, hope you make your decision and it goes well for you.

Thing is, since I made the decision the disease has settled but will it last? Do I go for the surgery or carry on with the nasty meds and not going very far from home?

When you say 'settled', to what extent? You said you are still not going far from home, so it doesn't sound like you are in remission. But if you were in remission, I'd be inclined to say cancel surgery! You have Crohn's, which is a different kettle of fish to UC for two main reaons. One is that most surgeons won't touch j-pouches with a bargepole if you have a diagnosis of Crohn's. There would have to be zero evidence of small bowel disease for a surgeon to even consider a j-pouch. And if you are not a suitable candidate for a j-pouch, you will have a stoma for the rest of your life. Two, Crohn's is a bit like the supposedly dead baddie opening his eyes at the very end of a cheesy horror film: it comes back.

Me, I had Crohn's colitis, along with a stricture in the terminal ileum. I had surgery two months ago, a subtotal colectomy with an end ileostomy. So far, it has been an 'interesting' journey and by interesting, I mean one that I would happily have paid to avoid, although it still wasn't as bad as a journey on London public transport. To be fair, it didn't exactly help that I left hospital necking various forms of Oxycodone like there was no tomorrow: still paying the price for that one. Anyway, the reason why I was so reluctant to have surgery was because I knew exactly what was entailed: a permanent ileostomy without even a reassurance of the disease being eradicated for good. I'm presuming a resection isn't open to you for the same reason it wasn't open to me: pancolitis which affects the whole colon. As I had small bowel disease, my odds for Crohn's returning are also dramatically increased.

That all said, I only had my surgery two months ago, which is very recent in the general scheme of things. In a year's time I might be singing a totally different tune and, indeed, hope I am. Also, I don't want to sound too ungrateful, because without Pred and without surgery, I would probably not be alive. That is not melodrama - well, actually it is :p - but at least it's melodrama rooted in actual truth, since a year and a half ago I became acutely ill, with spiking fevers of 40C and a CRP of 350 (representing sky-high inflammation). The surgeons actually wanted to operate on me back then, but my GI argued in favour of giving Remicade more time to work, plus iv Pred kicked in. But while I was temporarily saved, even at the time it only felt like a deferment, tbh. My colitis had taken a permanent toxic turn for the worse.

You have to ask yourself if your disease is really 'settled', or if you are simply delaying the inevitable. There is no way of knowing for absolute certain, but I do believe quite strongly in 'gut' instinct when it comes to something like this. It is also a quality of life issue. Your life doesn't have to be on the line to have a miserable, curtailed existence.

Finally, I hope I haven't been too offputting about surgery. So many other people report feeling great after surgery that I felt quite pissed off when I didn't feel great :/ It really depends on the individual, whether there are any complications, and so on. I forgot to mention: most people have laparoscopic surgery these days. Mine was open, so I think that is one reason why I have felt more pain and my recovery has been harsher overall. Go for laparoscopic if you can. Best of luck with whatever decision you make.

/ramblefest

Scarytime, somehow those colons always know when their time is up! A lot of people notice that as it gets close to surgery date their colons start to behave.
It won't last. If you can't keep it under control with all the stuff you have already tried, then it's not gonna get under control.
You will feel much better if you do it and get on with your life!
NiceCupofTea, you have just had surgery, you will get there.

Tons of good advice above. My husband suffered over 5 years and tried all the different meds, suppositories, foams, failed remicade. It got to the point it was easier to stay home due to the 20+ trips to the bathroom every day and the pain he was in even with pain medication monitored by a pain mgt. dr.

You will know when you reach the point of being sick and tired of being sick and tired...plain and simple. That's what did it for my husband even though his GI Dr. was advocating surgery a few years before he finally decided it was time.

In his case surgery went well, healing went well, after some trial and error with the various types of wafers/bags he has adjusted very well and found the one that works the best for him.

This forum is great...has a lot of caring people who can lend an ear and help to supplement information to make things easier if you run into situations you need advice or help on.

Good Luck.

Yeah in agreement the posts above. You'll know when the time is right. I met with 3 surgeons before I decided to go through with it. During my last flare, I finally was tired of it (5)yrs is long enough for me. I was a 100% decided when I went for surgery. I scheduled it a month from my pre-op, they called me and said they had a slot at the end of the week, so I told them - let do it, the sooner the better.

I was getting to the point where I felt like I was in a flare up half of every year, thats no way to live life. Now when I schedule an event a few months in advance I don't have to worry about the fact that I might go into a bad flare and miss out yet again.

#rolltide

:)

Probiotic said...

I really cant rag on my poor colon though- it was never it's fault that the immune system kept assualting it. I actually think in the end I will feel compelled to say "I'm sorry" to it like Tom Hanks did to his soccer ball Wilson in Castaway- sorry old buddy, you dont get to go to the grave eventually with the rest of me, but get chopped up into a million pieces in a lab instead long before then- but thanks for the good years (of which there were plenty), and it wasnt your fault (sniffle).

LOL - well said.