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Have Pancolitis and terrified of getting surgery

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Ulcerative Colitis
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Posted 8/10/2016 9:24 PM (GMT 0)
Hey, I am 22 years old and was diagnosed with pancolitis when I was 16. Up until today I thought my colitis was medium level, today after recently flaring I did research since all my books are from when I was 16 and have been in basically borderline remission for the past 2 years I've seen its the most severe and I am now freaking out because I also read that 25-40 percent of people with ULCERATIVE COLITIS need to eventually have surgery, so I'm freaking out because those 25-40 percent are probably the ones with pancolitis so now I'm thinking its inevitable for me to eventually have to get surgery when I'm older and its so hard to picture living like that like I know I'm being a little first world country baby right now but I'm just scared. I randomly found this site hoping for someone to talk to.
Posted 8/10/2016 9:55 PM (GMT 0)
Hi Gordon. I hear your anxiety, but is it less dire than you might think.

Many of the stats are based on the past 1 to 3 decades. It is the only way to estimate lifetime risk. New medications, specifically biologicals, have certainly lowered those lifetime risk stats, but we will not know how much for another 10 or 15 years.

Also there are promising advances in gut-microbe research and the field of probiotics. And, some other new meds and lines of research in the pipeline.

So, deep breath. Yes, you may if unlucky have a 10% or greater lifetime risk of needing surgery - but it is really unknown. Also, surgery does not necessarily mean a bag, there are many people living very well with j-pouches.

Keep you UC managed, and do not abide untreated inflammation. Take the appropriate meds. Learn what you can. Investigate nutritional and anti-inflammatory supplements. Keep an eye on your health. All of this will lower your lifetime risk.

good luck
Posted 8/10/2016 11:05 PM (GMT 0)
It's not inevitable - most people do very well with medication. I always felt like it was inevitable for me for some reason, and it was!!! Try to think positive, you can probably get by taking meds for the rest of your life.

I am so thankful to be done with UC and done with my colon. I am now free of medication and doctors. In retrospect, I feel like it would have been worth it to have had surgery way in the beginning. I wasted all that time and money. I missed out on so much. Made so many excuses. Underwent tons of medical procedures... and all for what? To save my sick colon for an extra year or two - which were years I spent thousands per year on drugs, doctors, dealt with a lot of pain, inability to do activities, work, dealing with insurance company and copays, deductibles... Not worth it.

You most likely will not ever need surgery, but if you do, it can be a positive thing. So try not to focus on it, get better and focus on staying healthy. Life after surgery probably isn't as you imagine. For me, it's been quite liberating. I feel more capable than I have in years. My figure is back to what it was before all the steroids. I go to the bathroom when I pee and I don't have any external sign of surgery, except the stoma scar, which is about .75in I think. I have another in the bikini area, but it's very low down.
Posted 8/11/2016 1:07 AM (GMT 0)
What exactly scares you about surgery? When something scares me, it's usually due to my own misunderstanding of it and therefore I want to learn more and verify/dispel what made up my original fears. There are a number of posters who've been through the process and can clarify.

The vast majority of UC patients do not need surgery. Most are able to control their UC using one of the many treatments available.
Posted 8/11/2016 1:00 PM (GMT 0)
I was only diagnosed with uc last month at 30 years old, my view on surgery is pretty much the opposite of yours. Ive already found myself thinking that it might actually be safer to just have the thing removed rather than be on medication for the rest of my life. Maybe I'm being dramatic/stupid I don't know but the thought of being on meds for life scares me more than the thought of having surgery.
Posted 8/11/2016 1:02 PM (GMT 0)
Hey Gordon,

Welcome. Great group of people here to share with. I've been on and off this site over the years.
Let me start by saying I was diagnosed with Pancolitis as well, which sometimes my doctor thinks shows signs of chrones. I've been through every scary thought and still do at some points during just about every day. What has helped me is preparing for the worst as if I'm planning for an adventure, then knowing that I've done what I can to prepare for if it happens and put it to bed.
Let me give you an example. I take meds (immunosuppressants) which scare the poop from my literally to stay in somewhat of a remission. I actually posted on this site the other day seeking a bit of moral support for my own thoughts too! I don't always take the care of myself like I should and I only have me to blame for that. I am however a pretty active guy and I thank God every day that I am able to enjoy this privilege.
What I did was spent time online googling hiking with ostomy etc etc. I know, probably overkill, but my doctor discussed surgery with me too and I needed to know how to continue to live my life on my terms if this happened. As much as this prospect still scares me, I'm a little bit more at ease knowing it's very possible. I found a great blog of a great woman who hikes and has an ostomy and does some pretty extensive trips. This shows that life can still happen. I also worked with a man who did physical labor with no real issues, only later to find out he also had one. There are also some great people here who have real experience and are happy to have their lives back that can help you if you ever got to that point!!
So Gordon, I hear you. Loud and clear. Take care of yourself and focus your energy on the now. Get yourself out of this flare if you can. Take a moment to think about the what ifs, but deal with the next step when you get to the next step. DBwithUC is right also, there are a lot of advances on the horizon. Hang in there. This isn't the end of your life, it's the beginning of your new way of thinking about your life.
(sorry for spelling or terminology or grammer mistakes - I typed this very quickly lol).

Cheers
Posted 8/11/2016 1:51 PM (GMT 0)
I think the surgery figure is not as high as 40% and I've never seen it stated that pan colitis has higher incidence of surgery. (I'd be interested if anyone knows this).

Here are my thoughts generally:

1. I'm glad surgery is available for UC (not so much for Crohn's) because it is generally safe and returns quality of life, no worries about immediate need for toilet, and life is almost back to normal. "New normal" because you have a learning curve in the beginning.

2. Most people on this forum report being very glad they had surgery done. It's about as unprejudiced information as there is available because surgeons and GI's are somewhat slanted to their own professional viewpoint.

3. I've met by chance 2 people IRL who had their colons removed and both were very happy with their life.

4. Don't worry about something you have 25 to 30% chance of happening. What you should be working on is getting your "borderline remission" better and pushing UC into the background.

Good information always makes me feel better so do some research on your specific condition and talk to your GI to ask questions. I doubt a surgeon would want to talk to you at this point but if possible talk to the one your GI knows and ask questions. Or find someone your GI knows who had the surgery and ask questions.

Don't fear something you know little about because you might make decisions based on faulty information (whether to have children, travel overseas, take a certain job offer). And even if your 40% number is correct why can't you be one of the 60% surgery-free?
Posted 8/11/2016 7:46 PM (GMT 0)
It took me a full year of intense research to finally come to terms with this disease. I was terrified and anxious. I am with UC555 when it comes to surgery but it took me a long time to come around to this line of thinking.

The colostomy bag is less common in UC now, but still a tried and true option and much better than constantly suffering. The J-Pouch has a reported 90% success rate with people being very satisfied with the surgery. I think the stage of your life greatly influences decision making. I am married with kids, my future is basically known, I have a clear career path, if I have to have a bag or J-Pouch, so be it...really doesn't change my life or who I am. On the other hand, living in fear of crapping myself, being in severe pain, and fearing what's around the corner definitely changes who I am and my outlook on life. If push comes to shove, I'm cutting the offending organ out.
Posted 8/11/2016 8:44 PM (GMT 0)
How do you know your a good candidate for a j pouch. I just couldn't imagine living with a bag for the rest of my life.
Posted 8/11/2016 9:49 PM (GMT 0)

Joeyg023 said...
How do you know your a good candidate for a j pouch. I just couldn't imagine living with a bag for the rest of my life.

I think the best way to find out more would be to go on a consultation with a surgeon and speak to your GI. Most people with UC are candidates. I think the only thing that would exclude you would be fissures or anything indicating that you might have Crohn's. Perhaps age may be a consideration, but I know for sure people in their 50s & 60s can be candidates. It seems like younger people adjust to the pouch better and often go less times per day. I have had mine under a year and I am in my 30s. Usually, for a UCer, the worst case is that it takes longer to complete the steps.
Posted 8/12/2016 11:11 AM (GMT 0)
Try not to freak out and worry too much about it. Odds are still in your favor you'll never need surgery. Yes, I have read (and asked my surgeon too) it's true pancolitis sufferers have an increased chance of needing surgery but as someone who has lived through a j pouch preocedure, it has actually been a blessing in disguise for me. I've been UC free for 6 yrs now and it's been awesome. Best of luck to you.
Posted 8/12/2016 1:13 PM (GMT 0)
The Crohns Colitis Foundation states that 20% of UC people will require surgery, not stating rates for pancolitis but that would be included in the 20% so would be lower than 20% for all pancolitis people.

http://www.ccfa.org/news/for-the-media/media-kit/fact-sheet-about-surgery-for.html

Of course everyone's UC is an individual case so you can make your own decision. Statistics always comfort me even though I don't want to be one.

Post Edited (imagardener2) : 8/12/2016 7:16:11 AM (GMT-6)

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