Surgery Pros & Cons?

Okay, so I thought I had come to terms with the decision to undergo surgery, and I have requested a referral for a consult with a colorectal surgeon. In order to prepare myself mentally for what to expect, I have strayed from my usual UC forum to look over some of the topics and posts you all have going on here in the ostomy world.

Here is what I have noticed - not a single person says they regret surgery, which is encouraging. However, I also see posts on serious dehydration issues, hair loss, painful sex, surgical complications, leakage, appliance issues, etc. and am wondering if I'm going to end up just trading one set of issues for another. My UC is a serious pain in the rear but not debilitating at the moment, and it seems that most people who have opted for surgery were in much worse shape than I am. (However, these are also the people who say they wish they'd done it sooner.)

I know that this site is a refuge for those who are struggling, and most of the successful ostomites are off enjoying their lives instead of getting online to discuss such depressing topics... but I'd like to be prepared for what to realistically expect in order to help finalize and cement my decision. What else do I need to know about the ins and outs of the process? What other things will I have to be careful of after surgery? Any diet limitations, etc?

So for those of you who have actually done it, I'd like to hear both your pros and cons. Thanks in advance!

Oh, and it would be a J-pouch surgery I'm considering. So I would have a temporary ileostomy until the "new plumbing" is ready to use.

Ditto what sue said. I just had my surgery about a week and a half ago. My blog would be perfect for you to check out. Its a firsthand as i could make it regarding the surgery. Being only that far out i am still recovering but i can tell you why no one regrets it. I was skeptical and worried about surgery just as anyone would be bit now that i am living through it i can tell you tht you can take all these folks stories for truth. Once your condition is beyond control, thos surgery is a godsend. It is not easy or fun recovering but to have all my UC symptoms gone and be able to ride in a car, eat without running to the bathroom, have zero stomach aches, be able to be worry free when there isnt a bathroom around.... I could go on for days. I am fully satisfied thus far. And yes complications can arise but i would never go back to having UC. Just keep getting informed, prepare yourself, do what the docs and fellow folks on here say and you will get healthy again!!! :) i think my blog would prolly help you siance you sound like your in the same spot i was before surgery! Myulcerativecolitisstory.blogspot.com. Good luck!!!

God Bless!!!

bootstrap said...
Suebear - Thanks for the encouragement, and thanks for that reminder in your first paragraph: I have already crossed that bridge and will never have a healthy colon again.

I'm curious why you think you will never have a healthy colon again? I am facing surgery also, but that is besides the point.

This disease can up and leave randomly and leave you with a healthy colon for the rest of your life. I know, it's unlikely, but it's possible. Hey, even Suebear had a 10 year remission a while after she was diagnosed.

First and foremost you must be ready and feel you have exhausted all possible avenues. Each case is different I think. I know my husband tried it all. After failing Remicaide and being on a month to month pain management program that at first gave some relief but then accelerated to the point he had to go to a stronger pain patch and more oral meds it was time for him. He had had enough.

It got to a point it was easier for him to just stay home. The urgency and frequency was too unpredictable and exhausting and frustrating. He was retired so it was easier to be able to do this but our social life was the pits to say the least. Of course it was very tough for him but it affected me too.

Once he had the surgery it was amazing even while he was recovering from the surgery and the incision how much better he felt when his rotten colon was removed. His doctor described it as "nasty" Fortunately the many biopsies for pathology that were taken he had no cancer (unbelievable actually) and no signs of chrons...just the UC.

He honestly and truly did wish he had the surgery 2 years earlier as that was 2 years of his life he could not get back.

Granted there are complications that can or may arise as is the case with any surgery but he felt he could not continue any longer and hoped and prayed for a successful outcome.

It will be 2 years this December and luckily he has only had the trial and error of finding the right appliance for him, one blowout (at home) and a few leaks (at home) during the first 2-3 months and has been very vigilant about drinking water and chewing really well and not taking a chance with the higher risk foods that can cause problems.

10 weeks after the surgery our car was t-boned on his driver's side which was a pretty good accident and I was very nervous but luckily no problems or complications from that accident.

We have been on a cruise about a year after the surgery and everything went just fine. Only needed to do the usual changing 2X that week even though we brought a lot of supplies. He ate A LOT that week...lol but made sure he did well with the fluids.

We have our 2 week ARuba trip back on track, a Panama Canal Cruise to be done before the end of this year and another cruise in the spring. It is great to be able to make these kinds of plans again and be back enjoying life.

Knowing that there are issues that could occur or present themself down the road we just don't dwell on. The past year and 1/2 so far has made it worth it as far as he is concerned.

As others have said and cannot stress enough is finding an excellent CR surgeon to perform the operation and also a hospital that has a very good WOCN dept too. I am not saying those with problems did not have good resources but I am sure in some cases that could be a problem.

In my husband's case I feel he had some of the best there are out there and that certainly helped his odds I think.

Bootstrap there are problems that can happen. Like sue said most of those things happen at first. And hair loss can come from lots of things. Everytime I had a bad flare my hair would fall out a few months after. It's just because the body needs all its nutrients for the more important things and hair and nails get ignored.
As for whether you trade one set of problems for another, this is what I thought, I KNEW I was miserable and hated my life with uc. So I decided to go for surgery, I had heard everyone say such great things, and I knew there could be problems that MIGHT happen. But even if they did at least I would be off the dangerous drugs.
So far, I've had a few dehydration issues, mainly at first, or when I'm on vacation and forget to put down the pina colodas and drink some water:). I just grab some chips and some water and am fine shortly after. I had adhesions in march, and had to have surgery for them. Was it fun? Nope. Was an adhesion surgery worth the 5 pain uc free years I had so far, yep. I had come back from a cruise, then went to new Orleans (both things I did prior to surgery and had a miserable time) had an awesome time both places, and then had the adhesions.
I've had a few problems with leaks, again mainly at first, but you are getting a jpouch so you won't have a bag that long. I chose a bag.
Anyway, the bottom line is no matter how you get healthy that's what is important. Either surgery to remove what will never be a healthy colon or meds to keep what will never be a healthy colon under control.
Good luck!

@SomeDude - By nature UC is a chronic condition. Even in remission, you still are diagnosed UC, have internal scarring and such from the really bad flares, and you have to watch carefully to make sure it doesn't come back. But I have lost hope for true remission at this point anyway. I have tried pretty much everything out there for this disease, and it just keeps coming back after I am off the Pred for very long. I haven't been in a real remission since it spread to pancolitis, and there is nothing left to try... except LDN and Humira, I guess. But honestly since the Imuran and Remicade failed, I don't expect Humira to work. And even if I could find a doc who would prescribe LDN, most people who are on it still have to restrict their diet quite a bit and end up with another flare-up within a year or two anyway. If I did want to try either of those, it would be more months of trying to live with symptoms (since both of them take up to a couple months to gain efficacy), only to chase a very slim chance that either of them could be of any help. And if it did help, chances are that it wouldn't be for long.

@SueBear - May I ask what got you into your 10-year remission and how bad your condition was before that?

My UC was super easy to control for the fifteen years it remained in my sigmoid. Once it spread, there has been nothing I can do to really control it. Pred is the only thing that really helps, and I'm even getting slower reaction times with that... plus I never want to go on that drug again.

@SomeDude, what would you do in my situation? At the moment my condition is not debilitating, but still very painful, and my life and diet are highly restricted because of it. I'm guessing it will only get worse if I don't do something soon. Supposed to start back to work on Monday (high school teacher) and really not looking forward to working in the state I'm in.

Trying Wellbutrin currently - one week into treatment. Still no change in symptoms.

Yea this is true, uc can up and leave but it can also leve you with a colon that is beyond repair as well. I could tell something was diferent in my situation and my colon went from just being inflamed and scarred to distended anddestroyed in a couple months as symptoms got totally unbearable. Surgeon said there was no way for medicine to help it. So yes, UC can leave you in a bad condition i you dont stay on top of it eiher with meds or surgery. Complications shouldnt just be expected but theres always a possibility. Just do all your research before surgery and keep everything clean and do everything your surgeon says regarding healing and go with it! Either way life couldnt be worse than deling with severe uncontrollable UC. Just search this sight an ostomy sites and take control of your own healing and you wont regret it!

Bootstrap-

Sue is spot on. So many of the complications, leaks etc. happen in the initial period after surgery when one is still healing and before one's body adapts to not having a colon. I had a rough time the first 4 months. I had healing complications with my abdominal incision and had to wear a wound vac. It took me forever to change my appliances, and I had a lot of output that was watery in the initial months. It felt like I was constantly emptying! My clothes felt tight because my belly was still swollen from the surgery. Half of my hair fell out from a mixture of UC meds, low protein levels from being sick, and surgery stress (it did grow back.) I had to watch what I ate off the no-no list for the first 8 weeks until post-surgical intestinal swelling went down. I am not going to lie... this was a hard time but I just had to take it day by day knowing that things were improving in the long term.

Fast forward one month after that to the point when I was 5 months post-op and things got immensely better. My incision finally healed. My small intestine began to adapt, helping my output to thicken and slow down and making me somewhat less prone to dehydration. My body settled into a pattern where I only had to empty my appliance 5-6 times a day and could usually go all night without emptying. I found the appliance I liked and could change much more quickly. I found with no more surgical swelling, I could wear all my old clothes again. I started to experiment with all the foods on the no-no list and was pleasantly surprised that those foods caused me no issues. I started to gain strength and at 5 months post-op, my surgeon gave me the go ahead to start snowboarding and going on overnight backpack trips again.

As the months progressed, things got better and better. I am now one and a half years past surgery, and my life feels so normal with my ostomy. And I take no meds except for a few things unrelated to GI stuff. I am back to all the sports I love. I travel, hang out with friends-- I no longer have to worry about where bathrooms are. Along with the sports mentioned above, I rock climb, do yoga and trail run. I have tons of energy and no longer have pain in my abdomen as I did with UC. I am a park naturalist and lead campfire programs up on stage and multi-hour hikes with no worries at all. I empty my appliance and am good to go for at least 4 hours, oftentimes more. There is absolutely no urgency in getting to the restroom which is such a relief after dealing with UC.

I also have celiac disease so I maintain a gluten free diet, but other than that, I eat most everything and have not had any issues with foods with a couple of exceptions. I don't eat grape skins, peel the white stuff off of oranges and avoid peaches that aren't very ripe. Everything else... popcorn, corn on the cob, nuts, mushrooms... I can eat it all as long as I keep amounts on the small side, drink lots of water and chew well. Everyone is different, but don't look at the no-no list and think you will never be able to eat all that stuff. My stoma nurse said the no-no list is only for the first 8 weeks post-op and then you have to experiment bit by bit to see what your body tolerates. I am able to drink all types of alcohol (as long as it is gluten free). Sometimes it causes liquid output if I drink on an empty stomach, so I make sure to eat crackers or something with it.

When you hear that it could take a year+ to heal from surgery, it sounds like such a long time. For me, now looking back at the past year and a half-- it seemed to go by in a flash. I didn't have to just sit at home that whole time. I went back to work at 8 weeks which helped life feel normal again. Once I was healed enough, I set manageable hiking, running etc. goals that kept me moving forward and gave me something to focus on.

As far as cons... I can hardly think of any. Sometimes having an ostomy takes some planning which means things are a little less spontaneous. For instance, if a friend invites me on a last-minute hike, I have to make sure I throw some extra supplies in my pack just in case I have a leak (I have never had to use these spare supplies because I don't have leaks, but it is good to be prepared). When I travel I have to think a bit more about what supplies to bring. This is such a small thing though, and amounts to an extra 15 minutes of packing time. One day a week I have to change my ostomy appliance on a work day so I have to get up at 5 a.m. to make sure I have time to do it. I do have to drink more water than I used to to stay hydrated, so I just make sure to be diligent in this regard. I have not had any dehydration-related incidents yet. These all seem like such minor things to me. The renewed health I found after surgery makes these little inconveniences so worth it!!! It isn't like UC was all that convenient ha ha.

It is easy to second guess your decision and say "but am I really sick enough to have surgery?" Before my final flare, which hospitalized me for a couple of weeks and made me severely ill, I would have never imagined I would need surgery for my UC. Though I was in constant pain, really tired, constantly bleeding, dealing with low iron levels, and having some pretty bad flares here and there over the ten years I had UC, I always felt that I was managing just fine. After my surgery, I came to the realization that I really wasn't doing so great all those years. I had gotten used to a "normal" and that normal was not good. Now that my sick colon is gone, I know what my body is really supposed to feel like. I know what it means to have energy and feel healthy and strong again thanks to my ileostomy.

Best wishes for whatever you decide.

-Heidi

I'm two months post-takedown and am doing very well- I had some pretty serious issues (recurring abscess) in between surgeries, but the fight has definitely been worth it. I am already at a point where I can pretty much eat whatever I want; I still limit the amount of some things I consume, such as nuts, because I want to be cautious for the time being, but I know that with time this should not be an issue. As an aside, a lot of times the people who are posting on sites like this one and jpouch.org are here because they need help with something, and are not doing well at the time they are posting. There are lots of ostomy and jpouch patients who are out living life well and without problems, they are just not posting about it on these sites.

As far as waiting until you are "sick enough" to have surgery... my doctor recommended thinking about surgery a couple of years ago, but I just didn't want to think about it, wasn't ready for it, then. By the time I was emotionally ready for it, I was very, very sick. I think that being this sick contributed to the problems I had during recovery. However, I know that if I had chosen surgery before I was ready, I would always be wondering "what if..." about the medicines I didn't try, about whether I would have been fine keeping my colon, etc. It's a tough decision; you will know when you are ready.

Thanks, Suebear, for the reminder - "you've already crossed that line and will never have a healthy colon."

A week ago, I was ready for surgery. I haven't had UC for long, but it's progressed from proctitis, up my sigmoid, and into my descending all within a year while being on drugs (including steroids). There's a thought in the back of my mind this past week "maybe Humira would work." I do NOT want to be on Humira for the rest of my life. I'm only 30. I do NOT want to deal with flares, increasing dosing, accidents always waiting for the drugs to fail, and need the surgery in 5 years anyway. In peer-reviewed journal articles Humira's success rate, while better than placebo, is not that spectacular for UC. Even if it worked initially, I do not think it would work long term for me (there is now evidence that people develop a resistance to it).

I don't know why after being set on surgery for a few weeks I'm suddenly having these second thoughts. I think my last Remicade dose (which was partially effective but I've definitely been building a resistance to it) has started putting me into a false sense of pseudo-security (even though I've had two accidents since the dose even when it was combined with 30 and 40 mgs of steroids).

Sorry for the thread hijack.

Glad to know that's normal.

Cecilia, what is your nationality. I am Romanian ( I live in Canada though). Cecilia is a somewhat common name in Romania.

Somedude, my mom is Swedish and my dad is American. I don't meet many people with the same name here in America, but it's quite popular in Sweden.