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First ever post/ 23 year old: Scheduled my surgery.

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Ulcerative Colitis
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Posted 8/3/2016 3:56 AM (GMT 0)
Ok, so I come and go on this site a lot. Fantastic stuff on here through and through. You guys are amazing. I've never reached out, but I feel it's time.

23 year old male. Full time PTA Student. Severe UC since 2012 and tried it all (humira, entyvio, canasa, Apriso, Uceris, etc, etc etc). Nothing ever really worked, just kinda suppressed the urgency, bleeding, weight loss. Honestly the anxiety in public places is the worst. Meds can't fix that lol. Just to be clear the urgency has never been touched by anything but prednisone and it's awful for you.

BUT, with all this said I'm ready to get this bleepidy bleep colon cut out and have made a date with my new buddy Mr. Surgeon. Ok this is where it gets interesting. The plan is a laparoscopic total colectomy with an ileostomy. If everything goes well it will be in about a month. Obviously I've read the horror stories, but has anyone been through this?????

I will have a three week break to recover before my program starts back up, so I'm a little concerned (I'm 6'1" 155lbs with no other medical issues). I've accepted the fact of the bag and all that jazz (idc about my appearance I just want a life), and trust me when I say that if I go the rest of my life without pooping out of my butt it'll be too soon :). Any words of encouragement, experiences, or advise is totes appreciated!

Thanks guys, wish me luck. Also I'll try and give updates.
-Tyler
Posted 8/3/2016 4:16 AM (GMT 0)
I had a 3 step surgery to get a jpouch and i can tell you, for me, it has been an amazing experience. Going from being nearly home-bound with zero confidence, to being nearly back to my old self (with some differences) is so liberating. I will never be normal like everyone else, but I am at a point where I am happy with myself and I've gained my confidence back. I no longer live under the black cloud of worrying about having an accident in public. The weird part is that I was able to avoid these situations for the most-part by limiting my life, but it was no way to live. Since surgery, I have been living the life I wish I lived all those years I lost with UC.

Are you opting for the end ileo by choice? Don't want a jpouch? I actually get it, that is the best solution, the most no nonsense, no worries about future inflammation... I can see going that route and living very happily and comfortably. I decided to give the jpouch a shot, and for me, it was a good choice. If I hadn't, it probably wouldn't have mattered, I'd still be content living with with ileo. Right when I got home from step one, with my end ileo, I instantly felt less insecure. I had new concerns, like learning how to use the appliance, and figuring out the future since I had 2 more surgeries to get though, but I was no longer a slave to the toilet and that was huge for me. I no longer felt like I was dependent on the health system and drugs. Life just felt more my speed - or more the speed I wanted it to be, the speed I was used to. I was very high maintenance with UC. With my jpouch, sure, I go to the bathroom more, but I feel so much less dependent on stuff...

It sounds like you've been through a lot. There are a lot of people who have gone further with treatment, trying trials. We have a user who is doing xeljanz trial now with good luck. He failed everything else. I can tell you, I read about people in trials and such, and as good as the results, I am thankful to be done with it. Even if you get a good year or two, or 5, do you want to go through this again at any point in the future? Even jpouch surgery doesn't guarantee a future free of problems - but an ileo does. It's very personal and I wish you the best. I feel so much better mentally knowing I am free of it all. It sounds like you're pretty confident with your decision? I KNEW after I scheduled that i wanted this. That helped me to get through it. I never saw myself as strong and I remember people with surgery on here talking about it and it was the last thing I wanted for myself. I couldn't imagine anyone could actually get through that, let alone say they were doing well, and oddly, here I am saying the same. It's bizarre.

there is an ostomy board here, lots of people who can help with tips on the ostomy. I got so much support there. Only a handful of people on this UC forum are supportive of surgery. In fact, if you didn't ask specifically about it, I wouldn't have felt comfortable saying it's an option.
Posted 8/3/2016 4:38 AM (GMT 0)
You're reply is absolutely amazing. And I thank you so much for taking the time to type that all out.

I may have my verbiage miscued as I am having the surgery that is leaving the rectum that will allow me to come back down the road if I chose to have the j-pouch. I could have swore he said ileostomy, but in the heat of the moment I could have misheard.

Bottom line it has come to these things: I'm tired. Physically and mentally. I see my friends going out and doing things and I'm over missing out. I want to grow and have kids, job, wife, etc. Being normal is something I do not care about. Heck I wasn't normal before UC, but I do know that I will never be happy like this and lord only knows what these meds will do to me years from now if I were still struggling to get by. My mother is my backbone and she fights insurance 24/7. Yes I'm 23, and tried to take care of it myself, but she won't let me. A lot of what I'm doing is for her. I see the stress on her face daily. If there's a chance (which there is, and a fairly good one at that) that this surgery is curative and the only expense is bag supplies and no meds. Sign me up.

Now with that said, this is my specific thing and I see you guys and gals out there that have found the med that works for you and that's phenomenal! I just haven't found that in almost 5 years. Regardless, we all know this fight all too well and I want to say I support all views and opinions equally and hope nothing but happiness and health to you all.

Side note: I get goose bumps thinking about being able to go out without having to know where the nearest toilet is at all times. Who has been in a public place and had the urgency hit and get to the stalls and they're all full??? Because I have. Fun times lol.
Posted 8/3/2016 8:00 AM (GMT 0)
I have a similar story to yours and was also diagnosed in 2012. Im 22 and a med student . I have tried humira , aza etc. with no benefit . I have just had my 2 nd remicade infusion yesterday. I Dont feel different yet , doc. Said a few days after 2nd dose should feel better. If not may need surgery .

Any way i am going to talk to a surgeon in a couple of weeks( same opting for laparoscopic surgery) . I do feel the same as u . I see my freinds travelling and going out almost everyday and im just bound to the bm . Im afraid to go out with my freinds do to the urgency even somewhere close to my home. its even difficult for me study without being interrupted to go to the bm.

Good luck with everything :)
Posted 8/3/2016 10:41 AM (GMT 0)
Hopefully Remicade will start to kick in for you! Infusions usually take a bit to see effects anyway. And it's so hard to get into a study groove running back and forth to the potty >:\

Keep an open mind and do a little research regarding the ostomies and prepare yourself before meeting with the surgeon. Thousands of helpful YouTubers, websites, etc are out there to help with questions. Also have a literal list of top questions because it's so hard to get a hold of the surgeon after the "meet and greet" (my problem now).

For example, one of my concerns is intimacy and the potential for ED. The stoma nurses and surgeon alike were super nice and answered all questions (don't hesitate to ask off the wall questions). Anywho, good luck and keep us posted! :)
Posted 8/3/2016 12:17 PM (GMT 0)
Good luck Tyler, I bet you'll love the new uc-free you! When's your surgery date? Make sure to update us on your progress.
Posted 8/3/2016 12:59 PM (GMT 0)
Hopefully September 6th. I plan on posting as soon as possible post surgery! :-)
Posted 8/3/2016 2:32 PM (GMT 0)
Hi Tyler,
I don't have much to add but want to wish you good luck with the whole process. There are plenty of people who were very happy with the surgery option and got their lives back. I would do the same if I were in your shoes. Wishing you well and please continue to keep us posted.

Welcome to the forum!
B
Posted 8/3/2016 3:09 PM (GMT 0)
I had jpouch surgery 15 years ago; best health decision I have ever made. I live a full active life and take no medications.

Sue
Posted 8/3/2016 3:26 PM (GMT 0)
Sounds like this is the best decision for you- and good for you keeping such a good attitude through it all. Good luck and let us now how you make out!
Posted 8/3/2016 3:29 PM (GMT 0)
That's a big and exciting step!! I had a temporary ostomy for Crohns resection, reconnected, and now have a permanent ostomy. It definitely gave me my life back. As soon as my colon was out my body as a whole already felt better even with the pain from surgery. Not having a colon is the best!!! I have energy like before I was diagnosed, I'm never anemic, I eat whatever I want, and I do not miss the toilet one bit!!! In fact after 2 years of no vacations because of being sick I have 3 trips planned in the next two months.

Since you are not having your rectum removed or jpouch done at this time just the colectomy and ostomy I would think your recovery should be pretty straight forward. Plus you are young so that is a big plus.

Best wishes with your surgery! The HW Ostomy group is great if you have pre or post surgery questions specific to having an ostomy.
Posted 8/3/2016 4:12 PM (GMT 0)
Very happy J poucher here. :)
Had my surgeries 6 years ago....no regrets.
It was tough while going through it but it's such a small blip on the radar map compared to the rest of your life UC free.
Best of luck!
Posted 8/3/2016 5:02 PM (GMT 0)
Right on board with you Tyler! Am 19 year old female and just went through every single medication to the point where I don't even want to bother on trials, just want my god darn life back and to be able to have some fun with my friends. Wish the best to you, and a fast recovery! Mine is set sometime in September as well :)
Posted 8/3/2016 5:16 PM (GMT 0)

cupcakespinkgal said...


Since you are not having your rectum removed or jpouch done at this time just the colectomy and ostomy I would think your recovery should be pretty straight forward. Plus you are young so that is a big plus.

My recovery from the first step was tough because I didn't know what to expect, but I did extremely well once I left the hospital, and I adapted quickly to my end ileo in general. The problem with leaving the rectum is that a LOT of people have proctitis after and end up living on the toilet - almost like they did with UC. I personally didn't have it so bad, it wasn't 100% cured, but it was limited to a trip in the AM, sometimes a bit of tenesmus, but nothing life altering. I have 2 friends from here who had such bad proctitis after step 1, that they were in nearly equally as bad shape as they were prior to surgery. I don't know if there is any way to know which boat you will end up in.
Posted 8/3/2016 6:41 PM (GMT 0)
Sounds like you've been through a lot. I have a similar story where none of the medicines have worked for me. I was on prednisone for so long that I forgot the last time I WASN'T on them.

I actually had an end ileostomy done on July 13, just 3 weeks ago. Before I went through surgery, everything seemed so bizarre to me. Living with the bag, having to adjust, watching what you eat (not as much as with UC but some foods are better than others). But after having it done, I can say it was one of the best decisions I've ever made. I don't have to worry about flare ups, making it to the bathroom, and just feeling bad emotionally.

I found it really easy adjusting life with the bag, and I'm sure you will to. Even the whole replacing process is quite easy. After a couple times of doing it on your own, it'll become second nature. I've already started to regain some of my energy and started taking light bike rides. Drink lots of water, and eat potato chips. The saltier the better. Try to walk a lot to make recovery easier.

I'll actually be off steroids in about a week, and I'm really looking forward to it. I'll be able to do the things I enjoyed, eat my favourite foods, and just live a healthy life.

Best of luck!
Posted 8/3/2016 7:48 PM (GMT 0)
You guys are seriously the best! I just got off the phone with administration and I'm set to go Sept 6th. Got my fingers crossed on no post surgical complications as that would cause problems with my program, but we'll cross that bridge if we get to it. I will say that now it is official, it's almost like there's a light at the end of a red, irritated tunnel shocked

I think I'll go take a celebration poop!

Is there a way to broadcast that I am totally available to contact via email if there are any younger UC patients that could need help or have questions? I discovered you guys too late, but now I would love to be available for those in similar shoes as myself whether my end result be good, bad, or ugly lol. Knowledge has always been power to me.
Posted 8/3/2016 8:19 PM (GMT 0)
Hope for a perfect complication-free process, but allow a little extra buffer time for the slight possibility of a complication that may result in a longer recovery period. For example, abscesses can happen, require extra care, etc. I'd go into it enthusiastic but informed that there's a few low risk complications that can delay progress and your doctor surgeon can clarify.

From your profile, you can share your email address. That makes the email icon into a clickable link by your username that other registered/logged in members can contact you from.
Posted 8/3/2016 11:28 PM (GMT 0)
Hey,

I had the same surgery two months ago. I posted my story here, for the encouragement of anyone facing the same:

https://www.healingwell.com/community/default.aspx?f=38&m=3657709

I love life without my diseased colon. Adapting to my end ileo has been really easy - I've had some very minor issues with skin irritation around the stoma, but it is *nothing* compared to life with out of control UC. I feel really healthy, I go where I want and do what I want. It is great, I have my life back. No colitis, no urgency, no fatigue, no anxiety.

I'm having j-pouch surgery next month. I hope you have a similarly straightforward surgery and recovery period!
Posted 8/3/2016 11:47 PM (GMT 0)
Best of luck!! I'm seriously considering surgery if I fail remicade at any point. I've spoken to at least a dozen people I've met randomly and some I've known forever who all agree life is so much better after surgery and have no regrets.
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