Thank you Peter! Superb, frank and funny.
Wow Peter NZ…one minute you’re posting your awesome and blunt responses :-) and the next minute…whammo..guess that’s UC for ya…the Grimm Reaper UC as I always say.
Wishing you continued health and healing. Please keep us updated on your progress…Shelly :-)
Stay tuned for the photos…
Thanks again for adding the pictures. I just got them posted within the story and can’t thank you enough for them. Take care amigo, and talk to you soon,
Wow! That Q & A was great, very informative and entertaining too. I would love to meet you in person, Peter. Even so, thank you for letting all of us UCers get a glimpse of your life and you too. Thanks for reminding me to keep positive.
Well done, I had surgery 8 months ago, after 10 years of suffering. life is worth living now and it is great to see the outside world instead of the toilet wall!!
I really enjoyed your blunt honesty. That’s what this website is about. Most of us are so numb to bloody poops. Who would’ve thought? I wish you a speedy recovery. I hope you keep us posted. Should surgery ever become an option I must face, you make it seem a whole lot less scary. Thanks you!
I’m 49 have lived with UC for a whapping 27 years…it’s got much worse over the years. Your comments have been so useful to me as I am now facing inevitable surgery. Many many thanks and best wishes for a speedy recovery.
Helen I am in a similar situation – 48 years old, diagnosed 19 years ago, but the last 5 have been steadily getting worse. Yesterday I told my doctor I am done. I can’t ride this roller coaster anymore. I wonder if its getting worse because of our age – hormone changes. I took this year off of work to see if less stress would make a difference – nope.. this year has been worse than the last. I am feeling better about surgery (i was terrified 2 years ago when it was first brought up to consider) after reading the success stories on this site.
You do sound like you’re in a similar position to me Kira.. Where do you live? I’m just outside London in the UK. I too am slowly getting my head round the idea of surgery.. The thought of getting my life back is exciting and not to be in pain with constant urgent trips to the bathroom. Probably going to try and stick it out to summer 2015 as it would be easier with my daughters then.
I live in Southern California. The only reason I can even consider surgery at this point is the idea of getting my life back. I have had so many accidents and flares the past year I just cant do it anymore. It still scares me, and my youngest child is 10 – which motivates me a little. I could have fun with them again instead of staying in or having accidents. I am a teacher and go back to work in August. I need to have it under control before then. Good luck to you, I hope you can get better instead!!
Your answers gave me quite a few laughs! But seriously, wahoo to your positive attitude and acceptance. Many wishes for continued healing and many awesome sick-free adventures. Your courage is inspirational!
I’m glad I could help.
Thanks, Peter, for sharing your experience with surgery. Helpful. Adam, in the future could you consolidate the questions? We all have busy lives, so one question/response for “Was it painful?” or “How many times a day do you empty the bag?” is quite sufficient. Thanks.
Hi Peter and others – thanks so much for the helpful Q and A. I wanted to weigh in as a follower of Adam’s blog for several years, and as a parent whose 18 yo son had the same surgery in 2012. Like Peter, my son was much improved upon waking up from the surgery. The very first night he commented on finally having a good, sound, pain free sleep. He was able to go to his grad ceremony 4 days later and felt so good, that he was the last to leave – stayed out all night! This was after years of being bed-ridden and severely sick and anemic. He had tried all diets and meds, including remicade, but nothing brought any relief. He did not ever get well enough to experience a flare up if you know what I mean as his life was a constant flareup. Like Peter, he did not want the surgery, but eventually had no choice. He resumed a ‘normal’ life pretty much immediately, after being basically bedridden.
He had a lot of the same reactions as Peter. Some bloody poops but his reduced over time, and he does not care too much what other people think about the bag. Although he empties the bag several times a day, he only changes it a couple of times a week. He has resumed a fully normal diet, and in fact, the more refined food, the easier it passes, so he is able to eat pretty much anything. He is pain free and has no regrets on having the surgery, although like Peter, he wishes he never had UC. Like Peter, he no longer farts, but at least he can always honestly say “it wasn’t me” in the car!
The gross factor dissipates quickly, and I find the poopy liquid really just smells more like a barnyard than a poop (he eats meat). We became interested in the science of it – pickles and carrots produce interesting results! My son experiences an occasional pain that we have been told may be a temporary blockage. He puts a hot water bottle on his gut and it passes within 20 mins or so. I’d say he experiences that about 4 times a year.
A lot of people seem to be struggling with whether to have the surgery or not. For my son (like Peter), he really had no choice as he was too sick to live anything like a normal life and had missed much of his teenage years as he was bedridden so much of the time. He therefore has no regrets as he did not really have any other option. I would say that having severe UC certainly gave him a strong, survivor-type character though.
In spring of 2013, he had the second surgery to create the J-pouch. That wasn’t quite as straightforward as having the colon removal, but he got through it. Like Peter, he has not been in a hurry to rush through the surgeries.
In a few weeks, he will have the final surgery to connect the J-pouch. Fingers crossed that losing his bag will give him an even more improved lifestyle.
Thank you so much for sharing your son’s story. It gives me hope and courage to even consider surgery. Being a mother of 3, a teacher, and wife, UC has made my life such a challenge. I had so many years without flares that I keep fighting, thinking I can get back to those stages where all I took was maintenance meds. But its not happening. Thank you again.
All the best for your journey, Kira. And if you have any questions in the future, don’t hesitate to ask. Sending you positive energy, Wendy
I scanned the answers but do not see where you were treated with
Infliximab, Remicade or Humira, which are now being used when
the drugs you took do not work…as a last resort. Perhaps I missed something
but I thought they were standard protocol now after drugs like
Prednisone and Cyclosporine do not work.
Yeah yeah nah, scan again and you’ll see that my colon was rooted, was in a bad flare and had emergency surgery. I’ll dig out some photos of colonoscopy showing the extent of how poked the old colon was.
That stuff wasn’t gonna reverse the damage seen
Thank you for the time you took to share your experience with all of us. I have ileostomy surgery scheduled for May 19 and I have been so frightened. Weepy and wishing UC would disappear. Not likely, but your assurance that life will improve on a steady curve and living drug free is sweet has helped me tremendously. I’ve had three babies I guess I can stand a little pain. God bless. Debra Sue
Hi Debra Sue,
Just relax and let the experts look after you. Procedure will only take a few hours and they knock you out anyway. Keep an eye out for the photos I have sent to Adam when they are posted, you will see that the surgery incisions are tiny. I felt fine when I woke up and ate my entire dinner. I didn’t experience much pain and you will be prescribed drugs that are delivered every few hours. At the beginning I was hooked up to a device that injected morphine on demand at the push of a button. No sweat dude. This is only a small a step onwards towards the rest of your life.
Drop me a line if I can help with anything else.
Your answer’s were very helpful wish you the best of luck Larry.
This website has been very helpfull for me.
I have had Crohn’s Colitis for three years.
Always had blood in my poo. Have seen the
Doctor loads of times. Last Sunday out of
The blue about 5pints of blood came from my bottom. I phoned the Ambulance and they were there in 10 min. I felt myself becoming
Very weak. Anyway I had surgery a few hours
Later. I am know recovering. When I go to the loo now I still pass a little blood. I don’t. Know
What is going to happen .
Very very great stuff here! Everyone keep plugging along. I had my surgery about 7 weeks ago and I’ve been back to doing yard work and starting to workout now too. Very slowly. Gained weight from the pred and have to shed it but it takes time. Attitude is absolutely everything with this procedure. It can go bad quick if you don’t have your head on straight and remember how the surgery saved your life!
Nice one Jake,
Yup, if you go into this with a bad attitude you won’t enjoy it anywhere as much as I have.
Thank you for all your kind comments and replies, especially yours Marlee – truly splendid!
I’ve sent a load of photos to Adam that illustrate what we have been talking about and what happens. They really should help to illustrate just how simple the procedure is. They will also show how bad the bleeding I was experiencing and how surgery was inevitable (it wouldn’t stop). Please accept my apologies for being a slow in doing this.
I still have some bleeding from my arse and will be seeing my delightful surgeon this Monday to see if we can determine whats going on and what to do about it.
Chins up and chill out,
It was great reading your responses now I just need to get my son to take a look too. Two years ago at the young age of 16 he had his colon removed in March (on my 50th birthday) he too had no choice the medications were not working and he was loosing so much blood that he needed blood transfusions every week and this was only after being diagnosed just six months earlier. He was now disease free and looking forward to having the J-pouch surgery a few months later. He returned to school just 3 weeks after the surgery and finished out the school year with great strength knowing the bag would soon be gone made it easier. The surgeon was confident the second of three surgeries would go well but did advise there was a 10% chance that it may not. Well he fell into that 10% and now is living life with his bag. Things will never be what they used to be but he is moving on with his life looking forward to his high school graduation, college, finding a girlfriend and living life pain free. I am proud of the man he is becoming and the strength he has shown through all he has had to endure.
(Just wanted to add I was born in Christchurch NZ moved to the USA in 1970 and will be making my second trip to visit family down under this July with my mum and three sisters we are counting the days. Wish my son was coming would have been great to possibly meet you)
It has been several weeks. How are you? What did the surgeon say about your bleeding? I hope it was a minor fix Thinking of you and hoping the best. Debra Sue
Been a while indeed. The doctors reckon colitis spread to previously uninfected region of rectum. The “cure” is to simply chop that out as part of the next stage of the J Pouch. So away we go with stage 2 of 3.
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