Intro:
I was diagnosed with UC in the beginning of 2011… It took me a long time to go to the doc about my urgency and blood in the toilet issues, and even when i finally went and had the colonoscopy, it took another 9 months to get into remission… I am pretty sure i have had UC for more years than i have been diagnosed, symptoms started when i was a kid (I’m 30 now), and I’m pretty tired of needing to poo! Or feeling like i need to, even tho not much except blood comes out.
I have had about 4 flares since being diagnosed, including now.. and currently even tho enemas are sort of helping, I’m really really thinking about surgery!
Symptoms:
Urgency, blood, mucus. Envy at all the people with perfectly working Colons!
General pain from my butt being in spasm all the time.
Crystal’s Colitis Story:
I’m currently in a flare, and am booked in to see my GI on 24th November. It is not the worst flare i’v ever been in, and each night when i take my disgusting enema and then try to stand still long enough holding it in, before i know il have time to run to the bin to dispose of the used bottle and then to bed to lay down on my side, i wonder if this is ever going to end.
I have a referral in to see another GI (my current is very pushy and scary at times – medicine wise) and I’m at the point where I’m thinking about other options. I’v been really good for about 7 months, but when I’m in a flare i feel like I’m dying out my butt.
I’m nervous about talking to my doctor about the possibility or surgery. I know this flare will pass, but i also know when life gets a bit stressful again Im going to flare again, and again and again and again….. you get the point. I guess I’m just wondering if they might think I’m being an idiot for even considering this option.
Im also scared about the cancer thing. If i have the surgery, although i will be pooping from my guts, i won’t have these lingering worries about flares and cancer and stomach pains, and butt aches, and blood blood everywhere anymore.
Am i being an idiot? Will my doctor think I’m not severe enough to warrant such a rash decision? Even tho sometimes i feel like death on a stick?
I’m worried people will wonder why i am even contemplating this route, but they have never had a bout of full blown UC flare. They don’t know what it’s like.
Also for anybody who has had this, What is the least amount of time between surgery and being able to return to a sit down easy going IT office job?
Meds i’v used – I have taken mesalazine this and that, Salofalk, Salofalk enemas, pred, Immuran, and a ghastly amount of other things i can even remember the name of.
Thanks for reading…
Crystal’s Current Treatment:
I currently use the auto immune protocol paleo diet. For some strange reason, fruit really seems to help slow things down. Which is awesome because I already intimately know all the bathrooms at my work, all major shopping centres in my suburb and my home, and I don’t need to spend anymore time getting to know them.
written by Crystal S
submitted in the colitis venting area
I play saxophone and studied jazz at university in Australia, however currently work in IT.
I also am a musician in the Australian Army Reserves. I’m very active and sporty when i’m not spending my time on the toilet with a sore butt!
Hi Crystal, I am in the same spot trying to figure out if I want the surgery or not, from what I’ve read about from other people’s experiences and talking to various doctors I am not sure if surgery will make a substantial impact that would offset the ‘cons’ with the surgeries of a Jpouch. I was told by a surgeon that I would go from using the bathroom 12-20 times a day down to 10-15. I’m also hesitant because all body parts have specific functions but work together as a whole and using the small intestine to do a second “job” can have it’s own set of complications. It’s a major decision and you just need to educate yourself as best you can on any way this will help you and to be prepared with what can go wrong. It’s not an overnight fix and it takes a while for your body to heal and get used to the new ‘normal’. Good luck to you!!
Thanks for your response Jennifer
Iv done some research already, it’s all pretty full on. And when I was first diagnosed my worst thought even was to get surgery, but I went into remission and forgot how bad it feels to not be in remission..
I can see how there could be other issues with the whole small intestine doing extra work thing… I’m unsure if I would want to go down the j pouch route also, as 10-15 times a day is still a damn lot of life time on the toilet!
I went to see my GI yesterday
She’s quite scary and aggressive and basically told me I have a very very bad case of the disease and that if it got to the point where I’m as sick as I was a few years ago, she would have to take my entire colon out! Which was lovely… And also made me think that at some point the surgery is going to be inevitable, and I wonder if I’d rather have it when I’m 30 so I can get on with my life, as opposed to 40 or 50 when Iv got less chance of bouncing back.
She also said she didn’t want to do a colonoscopy yet even tho I haven’t had one since 2012, because she knows what it’s going to show. My concern is that there’s going to be way more goin on in there that she thinks…
She’s put me back on the mesalazine (even though this had no impact the last time I tried it)..
I’m hoping to see a new GI soon and see what he says.
Good luck on your decision Jennifer
I hope whichever route u choose helps give u a bit more freedom
Hi Crystal
I posted this comment on the previous story but I thought I would copy it here also as it’s the same subject :)
I was diagnosed with pancolitis 4 years ago aged 22. I was hospitalised in 2012 for 11 days and long story short, i couldn’t wean off the prednisone as another flare would start. I saw my surgeon in Dec 2012 and decided I couldn’t live on meds anymore and organised my subtotal colectomy for 1st may 2013. The original plan was to have a 3 stage jpouch but after i’d had my first op I changed my mind. My surgeon advised me that 50% of jpouch patients gets on fine with it, 40% experience problems much like what Peter has explained. The remaining 10% have it so bad they have to go back to an illeostomy permanently. I remember sitting in my surgeon’s office and thinking that if there is a 50% chance all will be fine and a 50% chance I’ll just end up with a different form of bowel problems, I quite honestly don’t want to roll those dice. I got on fine with my ileostomy from day one and was living life like my pre UC days. I told my surgeon my decision and he said “If i was in the same position as you in regards to getting on fine with the stoma, and living life normally I wouldn’t take the risk of a jpouch either.
1 year after my first op I had my proctectomy which is to have the remaining 15cm of rectum removed (this is the bit they leave behind after step 1 of 3 of a jpouch plan) as I was having chronic bleeding from it and needed it out.
Long story short, 6 months ago I needed another op to remove 2cm of anal canal (this is usually removed in a proctectomy but newer techniques are leaving the anus behind to prevent a massive wound) and I was just unlucky to be bleeding from there aswel. My surgeon said that he is so glad I didn’t go down the route of the jpouch as colitis affected so much of that area, I would never have lived a normal life with a jpouch.
I’m 27 now and am getting married next year and have no regrets whatsoever in choosing to have my bag for life. It doesn’t stop me doing anything and the only thing I miss is being able to fart!
All the best and if you do go down the surgical route let me know as i’m full of tips :)
Tom
Thanks so much for all your information Tom.
Really makes me feel at ease… Iv been doing a lot of research and although some people choose to go with the jpouch.. i feel like whats the point in risking having more issues.
A lot of people live fantastic lives and aren’t actually that limited in what they can do with a permanent ileostomy.
Thanks again Tom!
I currently have an ileostomy as I had emergency surgery in Aug 2015. Things have been awesome since the surgery, I can not believe how much better I feel. The bag has been a breeze to deal with and can do anything I used to do now. I am planning on going the j pouch route though and pray all will continue to go swimmingly. I hope all goes well regardless of the decision you make and even better pray that you will just be healed of this awful disease and keep your colon. Either way, I hope all is well.
I had Jpouch surgery last year and it was the best decision I have ever made. I had a colostomy bag for 8 weeks and then had the reversal surgery and now am using my pouch. I am able to do everything now with no worry that I will even have that urge to sprint to the bathroom. During a flare I was up to like 15-20 bathroom trips per day and now I am down to about 3-5 bathroom trips a day. Surgery was long and recovery has been tough but you will never have to deal with a flare up ever again. I do not regret my decision at all. Even with the many complications that came with my surgery, I would do it again in a heartbeat.
Best of luck. You will not regret it.
Dan
#NoColonStillRollin