Following up on the Questions that many of you submitted from the newsletter group, Peter has been kind enough to provide answers based on his recent experience with surgery. I emailed all the questions to him shortly after they were submitted and below is a brief intro to one of the original users of the site, and all sorts of answers that I think we all will find interesting and valuable to learn from.
(In May, Kara who has had a colectomy was kind enough to share her answers to the exact same questions below, you can download her responses via her Colectomy Q&A PDF file)
Thanks Peter for sharing with us:
“When I had UC I didn’t at all research or look up “the bag”.
It wouldn’t happen to me, that was for other people, so I went into the procedure pretty much blind. I put my faith in the specialists and surgeons advising it “had to go”. I was really crook. I’d had colitis for 7 years and had on-going terrible flares as soon as I stopped taking prednisone or for no reason at all it seemed sometimes (I’ll post some photos). This last flare was just way full on and even 200mg prednisone was not having an impact. Anyway back to the story…,
So I say “Rip the bastard out” and the doctors do. I’ve never had surgery before and I just wake up, look down and there’s this bag sitting there. Job done. The surgery went seamlessly and I ate dinner when it arrived a few hours later (no shit) and went for a stroll around the ward. I got released after 6 days and that was mainly to prove / ensure I was capable of changing the bags etc. From there all the learning began and I’ll do my best to answer your questions………
At time of writing I have had 1 surgery and have an ileostomy. My colon has been removed and I have a stoma and an appliance (bag). Possibility of further surgery in the future to “hook me back up”. I thought I might be able to help by sharing my experiences. I’m not a doctor so don’t take anything I say as Gospel, but I have found out a few things on the way and I hope I can make the road easier for any other fellas out there.”
What’s life like now?
Life is good, I fell like a chapter is over and I can move forward and get back to being the person I used to be and move on.
What is having a bag REALLY like?
Tricky one to interpret. It’s like a having a bandage that needs to be changed all the time. I sometimes forget it is there already, though. There’s more to it than a bag. There’s the stoma itself (see photo). If you would like to be more specific I’d happy try to answer.
Is it at all embarrassing?
Not at all. I’m not the type of person to be embarrassed by the hand that nature has me. My friends and family have been super supportive around me. Who cares what a random might think?
Does living with a bag outweigh living with UC really?
Would I rather have a bag or keep on struggling with UC? I probably would have struggled on forever battling UC but in the end I didn’t have a choice and had an emergency surgery. When I was first diagnosed I was hospitalized and was a whisker away from colectomy then. I sometimes think it would have been easier if I just had it whipped out there and then. In my case I think I was on so much meds, was so run down, that eventually something had to give. Without the bag I reckon I might’ve been doing worm.
What are the possible side effects, as we know everything has a side effect(s).
Any operation carries risk. They told me 70% of people reckon they are better off after the surgery. There are still a few complications that may strike me along the way and well cross those if/when we come to them. At the moment I haven’t really experienced any major side effects. I have had problems learning to keep fluids up and not get dehydrated (and then not have to get up and piss all night). I have woken up in a pool of shit (yesterday) after eating a big meal late at night and taking a sleeping tablet. Didn’t wake up to empty it and it leaked. Lesson learnt. Haven’t been driving. Told not to work for 3 months.
I don’t endorse looking up things, on the internet, that can go wrong. I’d more look at what can go right. Why worry about something that might never happen? You also can get sucked into some rant from a depressed, pissed of cock, wanting to vent and bring other people down (for reasons only known to themselves). Sure it might not be a bed of roses to begin with but take each thing at a time and she’ll be right. I always remember that there are people out there SO MUCH WORSE OFF THAN ME.
Can you still fart ………
I miss farting. Mostly the humour and hijinks that come with it (blaming my daughter etc.). Farts now come out of the stoma into the bag. Not really any smell unfortunately. Interesting sounds on occasion.
Do you really feel better after getting your colon removed?
Yes, I had very bad colitis. I still get tired but improving slowly.
Also, how is the pain level?
Not much pain at all through the whole process really. I didn’t think about if it would hurt beforehand. They give you pills in the hospital. No ongoing pain. The stoma has no pain receptors so you don’t feel it.
Would you have gotten the surgery done sooner?
No. I was too stoic / stupid?
How big is the bag?
About a TV remote long and 2 TV remotes across. I reckon after it is about 1/3 full it starts to get heavy and you want to empty it (few hundred mls?)
Are you still able to be intimate with your mate? My name is Veronica from Philly.
Thanks for the offer Veronica but I don’t think it work with the distance and all that… luckily I do have a loving wife and yes you can still have a root. I hear you can get smaller appliances (bags) for sports and other activities.
Do you wish you had just done this in the beginning? I am paralleling it to the women who remove their breasts if they find out they have cancer or the gene. It is really worth going through all the meds just have surgery anyway? Jen from California.
Hi Jen, I know what you mean. I slowly but surely escalated up the med chain getting stronger and stronger pills. The last lot was Methotrexate which certainly didn’t agree with me in the end. Same with Azathioprine. But you don’t know till you try / experience. On the other hand both my brother and sister had 1 flare each and never had anything again (years ago now). I think the point just comes when you have either just had enough of dealing with colitis or the organ is just so knackered that it has to come out. I had a colon that was in place but didn’t work. All it did was bleed. AS I said earlier I sometimes think it would have been better if they had whipped it out on first hospitalization.
When did you decide that surgery was the best option?
When medicine failed to treat the flare. I was very sick. Anemic, low haemoglobin, impaired immune system, osteoporosis… the works
Had you tried all possible medications or was surgery something decided on to avoided all the drug taking?
Yup. Prednisone (shitloads) Pentasa, Azathioprine, Cyclosporin, Methotrexate, vitamins, cal D forte, sure there are a few more options but I didn’t have time for those. The next step was to volunteer for drug trials and maybe give Remicade a shot. Also gluten-free vegetarian.
How close to normal is everything “functioning”?
Pretty good I suppose. I eat and it comes out later into the bag. Is that what you mean?
Did you have any complications? See above, not really at this stage.
I am a guy (John from Fort Worth,TX ) and I’m worried about sexual side effects. Have you experienced any of this?
No sexual side effects at all John; still like women and they still like me. Everything working.
Are you glad you had the surgery?
Yes, but I wish I didn’t have to….
How noticable is this to your mate?
They don’t like the bags which are transparent and you can see all the action. I was wearing these in the early stages to get a grip on what was going on. Been hot here in NZ so had shirt off a bit. Other bags are beige and you can’t see anything going on. Under a shirt you can’t really tell.
Not offensive. The discharge doesn’t smell (but I’m a plant eating pussy so can’t vouch for you carnivores!) as, I believe it hasn’t been in your body long and hasn’t been subject to gut processes that the colon used to do.
Would you recommend this surgery to someone who has months of remission in between flares? My Father and Cousin have both had it and are so happy!
Depends on the state of your guts mate, Mine were totally shagged. I also was taking loads of Prednisone and had bad side effects from that.
How painful was it?
Not much at all really. You just take it easy.
How long were you in the hospital?
6 days post-op. Reckon take it easy for 3 months.
How long were you out of work/unable to work?
Depends on your job I guess. I’ve done a bit of computer stuff at home. Definitely no heavy lifting / physical stuff for a few months. I get tired easily and spend the next day recovering.
How big is the bag you have to wear?
About a TV remote long and 2 TV remotes across. I reckon after it is about 1/3 full it starts to get heavy and you want to empty it (few hundred mls?)
How do you sleep with it at night – do you have to sleep in one position to avoid it coming off or getting squished? Shelly Simons Disputanta, Virginia, USA
HI Shelly, It is on my right side just a few centimeters across and down from belly button. I can easily sleep on my side but have found myself sleeping on my stomach.
Was it worth it?
See above. Medical emergency.
Do you have issues with pooping while having your bag? I do and would like to know if there are any good ways to deal with it. Colon out last June, December the reversal failed due to infection, bag back on 6 surgeries later, reversal scheduled for July… Oh yea, USA!!
No problem at all. Good luck for your reattachment, mate.
How long was the recovery?
Still recovering after 5 weeks or so. Recovery has been very smooth. Probably about half way there.
Was it painful?
Not really. But I’m tough as leather! The pills help a lot.
Does a J-Pouch feel like a rectum?
I haven’t got a J pouch. That may be an option in the future.
Hello my name is Harun in Atlanta (Olympic City) GA. USofA!!! I have recently had “most” of my colon removed the first in a three part J-pouch. If your surgery has left you with any part of the rectum do you still have problems from colitis (my doctors now call it proctitis but i still have many of the other symptoms of UC as well)? If so have you found any relief and how?
Yes! Good on ya sport for writing in. I have some of my rectum left (stapled shut) as colonoscopy revealed that it was intact from colitis. I have noticed that I am still going to the toilet and a small amount of bloody, pinky stuff comes out. I was told this was “normal” at my follow up outpatient clinic. I’m beginning to think I have haemroids (have had them before) and this is the bleeding. I have started using “Proctosedyl” suppositories in just the last few days. I had them left over from previous flares. These have helped reduced discomfort in the past. I’ll be following up in my next out patient clinic in a few months.
I’ve been considering surgery. One of my biggest issues right now is urgency and I’m trying to decide if I were to have the surgery right now and do 2-stage j-pouch route, if I would still have the same issues?
I’ve only had the 1 surgery and have a bag. No urgency anymore with that.
Was this a concern for you or something that played into your decision making process?
I had no choice as colon was wrecked.
What triggered your decision to go ahead with surgery, will you have to have more than one surgery (i.e. is this done in 2 or 3 stages), and now that you have taken that step are you still convinced it was the right thing for you to do?
Colon was stuffed. Didn’t work, just bled. I’m just taking things slowly and not committing to further surgery just yet. I have an appt. with surgeon to discuss next steps. I work away from toilets a lot so need to be sure that reconnection is right for me. The bag is fine to live with so far.
Are you a candidate for J Pouch surgery? If so, are you going to consider it? Rosemary – in Maryland, USA
Yes and yes, Rosemary. But I’m in no rush. Why rush it? I have to get over this first anyway. Let’s see how it p[lays out.
I understand that after surgery you now have a multitude of issues/problems that you didn’t have before. These may include, but are not limited to, an ostomy or j-pouch infection and the fact you’re still going to the restroom 10+ times a day!
I have been sweet as so far – so no I don’t have a multitude of issues/problems that I didn’t have before. Don’t know where this idea came from, sorry. I wouldn’t look at the potential bad things. Sure shit can happen but it doesn’t always. I don’t have J pouch, just a bag.
Are you still happy you had surgery ?
Well I had no choice, but I’ll say I’m feeling a lot better and I wish I didn’t have colitis in the first place. It’s a funny thing because when the cut it out it ain’t coming back. But mine was rooted anyway and didn’t work.
My name is Kara and I am actually scheduled to have my colon taken out in April. I have had a loop ileostomy for the past 6 months due to an anal abscess that when drained turned to a fistula. This was all during a huge flare. I was down to 93 lbs in. The hospital but now back to my normal weight and feel great. What is your best piece of advice when facing surgery to prepare physically / Emotionally?
Good question Kara. The first thing I’d say is be POSITIVE and think about how great it will be to have all this bleeding/flares eliminated. This is just a standard operation that happens everyday. You will wake up with no more colitis. I always remind myself that I’m lucky and there are so many people who would love to be in my situation right now. Next, I’d just say go with the flow. Good luck, you’ll be fine I’m sure.
I have UC and was in a flare for over a year with meds failing me. I am welcoming my surgery because I’ve seen what life can be like again when I feel good. Even though it means having a permanent stoma.
Same boat as me. A stoma isn’t that much of an issue for me.
Hi There, I’d just like to know how painful is it when you come around from the surgery?
Did not really hurt much. Was keyhole surgery with one larger cut to remove the organ. I wouldn’t be worried about pain if I was facing surgery, mate.
What kind of pain do you experience?
Not much. They give you pills.
Where is the pain?
From the incisions.
How long does the pain last?
This is something that I really need to consider before opting for the surgery if and when that time comes. Regards Hayley (Birmingham, England).
Hi Hayley, Good luck with it. Don’t worry about pain. Look at my photos and you will see I wasn’t cut right down the middle. I lived in Birmingham 10 years ago. Had a great time there!
I am considering an ileostomy since I have been unable to reach any remission without steroids. I am frightened of being cut open and having a bag attached to my body for the rest of my life. How did you face the realities of your surgery without a ton of anxiety?
I just accepted that it had to happen and to move on. Once I admitted the organ was knackered I found it far more easy to just get on with it / even look forward to it. I just said “rip the bastard out” and it felt like a weight had been lifted off my shoulders.
How is it to empty the bag?
Very easy. Just undo the bottom and squeeze it out like toothpaste. If I’m going for a walk or something, and need to change it, I just squeeze it into someone’s letterbox as they are the perfect height…just kidding! I carry a small bag with some supplies in case of leakage or needing to change the bag in an emergency or something. Haven’t needed it once yet.
How long before you felt even slightly back to normal? Thank you for taking the time to care about us. Debra Sue
Hi Debra Sue, reckon I felt heaps better after just a day or 2. After 5 weeks I’m getting better everyday.
How do you feel?
Sweet. No more nasty flares and no more meds….
Compared to living with the symptoms you had – is it worth it?
See above. The symptoms were becoming intolerable as the organ was stuffed and medicine didn’t work.
Does having a colostomy bag beat going to the loo 20 times a day?
No blood no meds. Still emptying the bag about 10 times a day but it’s very easy and quick. Have to do it during the night.
How long between surgeries to you have to heal. ?
Was advised at least 3 months.
Do you feel surgery improved your quality of life?
In my case at this stage I certainly do.
Did you have a drastic improvement in your pain level after the procedure?
No colon + no colon pain. Immediately.
Would you recommend it to others with severe UC?
Yup. I’d definitely talk to a surgeon about it. A day may come, when like me, the flare just won’t stop and the meds don’t work anymore. Why not be prepared?
How did you pick your surgeon?
Public hospital / emergency procedure. I had health insurance and with the luxury of time could have spent time choosing someone. I didn’t have time. Auckland hospital was fantastic! Thank you! I could have chosen the same surgeon anyway as he works in the private sector as well.
What medications had you tried to manage your UC before the surgery?
See above – most of them.
Did you have pancolitis?
Yes. Whole organ riddled with inflammation, scar tissue and pseudopolyps. I was awake for colonoscopy and even I could tell the writing was on the wall.
What is the capital of Belgium?
PART 2: the dawn of blood…..
“Ok so we were cruising along quite nicely it seemed. It is now 8 weeks since the operation. There was some discharge from my arse but the doctors said this as to be expected and I had the remains of a blood clot in my rectum. However, the bleeding got (and still is quite) significant. I am actually sitting on the toilet in the morning and having a shit of blood (remember I have had my entire colon removed). This happens up to four times a day. The result of this has left me tired and disappointed. Still positive though and I’ll go see the docs about it. I’d say it’s not unheard of.
What I now realise is that I wasn’t recovering from a simple (though major) surgical procedure, I am also recovering from years of anemia, prednisone, being unfit,.. all those things colitis symptoms. So I will now slow down a bit.
Righto, you little feckers; on with the questions….”
How many surgeries did you have and over what period of time?
1 eight weeks ago. No colon now.
The surgeon we consulted with told us they would do 2-3 surgeries over the course of 8 weeks.
That’s tight. Mine said every 3 months or so.
Did you attend school or work between procedures?
Did you tell classmates or coworkers about your procedure?
Yes, I tried to hide colitis for 7 years and I think this was the wrong thing to do
How long did it take to recover from the surgery?
Still recovering but pretty good now, except for anal bleeding. I can do a 30 km bike ride ok – tired next day but! Swimming is fine
Did you have surgery complications?
A small cut under stoma did not heal as fast as the others. Keeping my eye on it. Might need stitches, I dunno.
Did you have problems with urgency after the procedure?
No, you just empty the bag
How soon afterwards did you resume participation in sports (including contact sports)?
I was walking around the same day as surgery. I reckon leave it about 6 weeks and start easy
How many times a day do you use the bathroom as compared to before the surgery?
Before surgery up to 30 per day. Empty bag now 5-6 day or so.
Did you have incontinence issues after surgery?
How did you have to change your diet after the procedure? -TEAM USA
Drink more fluids, exclude alcohol
Do you still have to watch what you eat it and how many bm a day after surgery?
They give you a list of good/bad foods etc. I find simple plain food is all I feel like just now. No desire for salad at all. I weigh 77 kg and don’t eat a terrible amount, so I empty bag half a dozen times a day on a good day
I just had my colon out 3 wks ago. The surgeon is going to do a 3 part surgery with a JPouch pull thru over a 6 mos period. I had severe UC. Had it for 12 yrs with it getting severe the last 2 yrs. tried remicaid for 2 years, no help. My question is how do you go out in public and empty the bag? Mine has the worse odor. Also I can’t bend down over the toilet to empty
I just dump it in the toilet and wipe up any excess with toilet paper, takes about a minute. I have no unpleasant odours at all – but I don’t eat junk food or meat, give that a try, maaaate.
You could try sitting facing the other way on the toilet? Or tip into something else first and bin it or wash it out
I’ve had my colon removed due to 33 years of ongoing UC in May 2012. I’ve gained a lot of weight with prednisone – 30 lbs before surgery while in hospital. My most excellent surgeon told me that I must lose a lot of weight before a resection. I’m 5’8″ and 215 lbs. How much weight should I take off? Any hints to hurry it along? Jennifer from Calgary
Hi Jennifer from Calgary. I’m about 5’10” and 170 pounds in Calgarian Weirdness Units. If it was me I’d ditch the car, cut the junk food (sugar and fat) and just do stuff. Start slow and keep your goal in mind
HAve the pros outweighed the cons in doing so?
Yes, I believe so. I’m in a much better place now.
I wonder what made you finally decide that surgery was the answer. I am 67 and was diagnosed with severe UC three years ago. I have been on Remicade for a year with marginal results (I still have emergencies too often and don’t eat any meals too far from a bathroom). My friends have all said I should have the surgery-I just don’t know! Carol-United States
Well Carol I was very sick for many years and the old colon just gave up the ghost mate.
florida RoseAnn Fischer
Are the doctors going to hook you up to the J pouch so no more need for the bag?
I haven’t decided yet RoseAnn. It has been discussed but I’m no hurry
Something as basic as what is life like after the surgery, is it difficult to live with and are all symtoms gone. Canada
Life is good. The bag is easy once you get used to it
Will you lose a lot of weight and can not get it back.
Weight been stable but now I’m not sick I’m doing things and getting fitter and stronger
Do you have the j-pouch if so how is it working.
No J pouch –bag instead
How long did it take to get back a little normalcy.
Dose your stomach sink in.
Are all your problem’s gone.
Nope, see above
How much pain.
The pain of the procedure wasn’t outrageous if that is what some of you are thinking – think like a caesarean a mother might have. It doesn’t last long and isn’t that much of an issue
Are you cured or still have problems.
Still bleeding from remains of rectum – see above
Anything else you think will be helpful please let us know.
Be nice to your family
Do you have bad scar’s.
Nah, just a few little key hole nips and one about where my belt goes that is about 100mm long.
My 12 yr old son is scheduled to have his first of two surgeries next week. We have tried every med with no luck because his UC is very aggressive. We are scarred about his pain factor and how long it will take him to feel less pain after the first surgery.
The pain is fine to deal with – good luck
How bad were your flare ups and how much medication were you on that prompted you to opt for surgery?
My doctor who has been treating colitis for 20 years reckons I’m the worst he’s seen. From how quick a flare develops to the extent of the inflammation to how sick I get. I have taken 1000’s of pills. Eventually the colon just had to go.
I am from Ireland and making enquiries on behalf of my 20 year old son who is on humira and would be little in denial. My question is if he had surgery would he play football sport again as this is his life and at presently is unable to play any sport. . He has low energy and seeing some hair loss. Thanks from worried parent!! I love to get the emails so well done on all you work to date. Pauline
Pauline, I was so anemic with colitis I couldn’t do feck all. Now I can do HEAPS more and its only been 8 weeks. I expect to be able to do anything I want once I’m fully healed. Football should be fine as long as he practices and perfects his falling over in the penalty box……
Having removed your colon are you now required to carry a bag?
Yup, it sticks to your belly
Are you experiencing any serious side effect or other problems?
Yes, I still bleed from anus – not sure how serious –will see doc and find out. Otherwise all good.
Would you suggest other UCers to get the surgery if they are well controlled on Asacol ?
that’s one for the surgeons to answer. I’d say no if it were me but that drug didn’t work
Is it true that once you have sugery that your butt has to be sewn up ?
depends how naughty you have been! Mine wasn’t. I hear that sometimes that is an option
Did your doctors make you feel pressured to get your colon removed? -Teanna from Canada
They reckoned that one day it would go and they were correct. They didn’t pressure me but kept me closely monitored
Is there an odor from the bag?
No, but it can make noise
How often do you have to empty or change the bag?
½ dozen times a day
How hard is it to get a seal on the bag and finally,
Easy as Aunty, you just stick the bag on and away you go. If you are lumpy or have loads of folds in your skin it might take awhile to sort out what is best. They offer many different types and shapes of appliance.
how long before you felt better after surgery?
After trying every medicine under the sun with no success, I’ve been told my only remaining option is surgery. I’m not sure if we are talking total cholectomy or just resection. My question is – has anyone ever gone into remission with no meds needed by just having a resection ? And for those who have had the j pouch surgery – are you happy with the results and are you still on meds? I’ve heard some people say they still have to go to the bathroom multiple times a day even with their j pouch and that they still have the same problems as before in terms of urgency, frequency and diarrhea.
My guys told me it was total colon gone or nothing. They used to only take a bit out like 30 years ago but that has largely been discontinued here.
I no longer have a colon that can bleed.
How is sex after surgery?
The same for us
Is there leakage from the butt after surgery. I always imagine the worst.
I’m getting a bit of blood from my arse but it is not leaking. I have the urge to go poop and some blood comes out.
Do you have any regrets?
I once sold a bike I wish I had kept now
Multiple part question(s):
Why did you choose surgery
I was fucked – surgery chose me
how bad were your uc symptoms
the worst I’d ever seen or heard of
how long did you have uc and symptoms
did you exhaust all other options)?
I reckon so, sure there’s always something else but was sick of the rollercoaster of remissioni / flare remission / prednisone, and I was very sick
I’m scheduled for J pouch surgery end of next month. How long till I’ll be able to work out again?
Light stuff pretty quickly but I don’t work out
or go swim?
Couple a weeks
Is it ok to go to the beach?
Sure, I went last weekend in the surf
Do you still have symptoms and pain?
No pain really, some anal bleeding
How long was your recovery?
8 weeks and counting
Do you have a pouch or a bag?
How did you find the right surgeon?
Hospital was full of them
Did you try everything first?
No, but I did try a shit load
All drugs including newest drugs?
Plenty – I was sick of them and they made me sick too
Did you feel like normal now?
Are you glad you had the surgery?
What medications / alternatives did you try before opting for surgery?
Drugs – prednisone was the best but that is….you know
How many years did you have UC for before going in for surgery?
How is your lifestyle now after surgery?
Better every day, new energy, new, drive, more enthusiasm
What is the recovery period?
After 8 weeks I can do heaps but am very tired next day – sleep a lot
What precautions must one take before the surgery?
Same as any surgery I guess. I took none myself
How much pain are you in after the surgery, and for how long?
Not much pain at all, don’t even worry about it
Also, with the bag, what happens to “passing gas”?
there is a small charcoal filter on the bag that lets gas out
My question is the folowing: is it possible to participate in intense physical activity (hockey;running; even swimming). That you so much. Jean-FranÃ§ois Bayouk from Montreal Quebec Canada
Yeah mate, you’ll be sweet as. Take precautions to prevent hernia and cover/protect the stoma. I intend to play cricket again and that is probably the most vicious game there is both mentally and physically.
And that concludes the marathon Q&A session from Peter NZ.
Thank you to all of the participants from the newsletter group who entered questions for Peter to answer, and most of all,
THANK YOU THANK YOU to Peter down in the New Z for answering everyone’s questions.
We are all wishing you the very best in your continued recovery and for sure keep us posted on how things turn out for you moving forward.