Hi Guys,
Has anybody had the operation to have a colostomy bag fitted? I am getting to the end of my tether with all the flare ups i keep having and am seriously considering having it done. This colitis has put me out of work because of going to the loo so many times. So advise please guys! is it worth having it done and what are the draw backs?
Terry x
Hi Terry
I am in the same situation as you with regards to the UC. I have built up an intolerance to all drugs that I was on and my consultant advised me yesterday that surgery may be my only option. I am currently on 150mg azathioprine and Infliximab, which is given by IV. I have been told that the IV is no longer working as I currently having my worst flare up, whereby steroids have not been able to help with my symptoms. I am due to start adalimumab (injection) for a month and if my sypmtoms do not clear, I will be referred to the another consultant in coloproctolgy. I am also keen to know how people have coped with a 'bag for life'. Out of interest, have you also exhausted all your drug options and do you mind if I follow your thread to see what replies you may have?
Thanks,
Sue
Hi Sue,
Its ghastly isn't it and completly life changing. I was diagnosed just over a year ago and it seems to have got worse. Currently on the loo at least 10 - 15 times during the day and also 3 -5 times during the night and mostly just to pass wind with extras. My meds at the moment are prednisolone, sulfasalazine, lansoprazole, some calcium tablets and non-presrciption charcoal tablets. Its like being the bloody living dead aint it, im soooo fed up with bloody tablets and nothing seems to work. I have to seemy consultant next month and will chat with him on what to do next. You seem to be worse off that me darlin with everything that you have taken and nothing working for you just must be so horrid. Maybe the bag is for you? Rumer has it that once you go for the bag you get your life back but i would like lots of opinions on whether that is true. I do feel for you its absolutely horrid this disease and strange that there is no cure. Please follow me Sue and we can both find out from our fellow sufferers the pros and cons of having the bag fitted.
Terry x
Well,
I'll tell you in 24 hours - I am currently sitting in hospital awaiting test results to see whether my colon can be saved and to be honest after constant pain, drug side effects and shoving enemas up my backside - I'm also a awakward patient as a 'back seat driver' academic/professor type so to speak and perhaps I expected more from the drugs based on my knowledge.
My view is that if the current hydrocortizone injections do not work and my colon still looks like a pizza inside, it is time to be mature about it and part company with my bowel. The majority of people having the procedure will only be on a baf for a short while until a ileal anal anastomosis - J/W/S pouch is created as a colon replacment. Most people speak highly of the results and live a far better life than they did with colitis.
So, if the drugs don't work, life is hard and the consultant agrees then there is no shame in having the procedure done as an elective. Discuss this with your family and doctors to see what their opinion is.
My problem nows is that after yesterday's scan they are now not sure it is crohns or colitis, so I could end up with no colon or part of the colon missing by this time tomorrow! Strangely amused by it all, I've had enough and just want a solution.
Hi,
Sorry to hear how bad things are. The following is just my opinion, I am not qualified in any way and you should always listen to your doctor.
1. Have you tried changes in diet? In my experience diet is the most important thing you can do for UC.
2. Are you able to have a J pouch? Where they make a new bowel out of your upper intestine?
Again just my opinions from experience but going for the bag is a one way street so not something to jump into lightly.
Hi Terry
Thanks for your reply. Yes it is a pain in the rear (excuse the pun). I am like you, as I open my bowels between 10-15 times a day and 2 times on a night. I have the feeling that I want to pass something and that I am 'full' but it usually just wind or blood that I pass.
Unfortunately, I suffered a Pulmonary Embolism in November 2014 and am currently having tests (carried out by Haematology) to see where the clots may have come from. When I spoke with my UC consultant yesterday, I asked him if it is likely that the UC caused this and he said although rare, it could happen. So for me personally, surgery will also elimate the chances of me having another clot, when I come off warfarin. I have tried numerous diets and have found eating plain chicken or salmon, with rice or pasta, or the odd jacket potato without the skin, are foods that lessen my symptoms but I have been suffering with a constant flare up, even if I dont eat anything.
My consultant is adverse to surgery but says that because we have now exhausted all our options, I should consider an operation.
As Tony3390 mentions, you can have a j pouch but as my disease started off with proctitis, they will not know till they operate whether I will have a clear bit of rectal stump that could be used to make the pouch. I have read some blogs where poeple are having the operation for a J Pouch (apparently my colorectal nurse says this op is done in 3 stages) that whilst they are recovering from the first operation, the removal of the colon, they start to get used to their temporary stoma. Once the next op comes around, which is up to you how long you want to leave it (within reason of course) that some decide that they dont want to put themselves through surgery again and that they have surprised themselves and coped well with the bag and decide to make it permanent. Like Tony3390 said, once you make that decision, there is no turning back. My colorectal nurse recommends trying the j pouch as the only thing you are likely to suffer from, if you are unlikely, is pouchitis. She said you begin to learn to use your 'new bowel' again but will have mishaps along the way. She said it is best to give it a go as it would be nice, if that is the right word for it, to be able to pass a stool from the backside. I know that if you go for the colostomy, or if that is the only choice you have, they sew up your backside, which makes me cringe for some unknown reason. My IBD nurse is arranging for me to speak to someone who has this done so that I can ask them some personal questions. I don't know why, but I am not that bothered about the bag more about how it will behave and the thought of having to go through airport security and on a plane......will it inflate like a bag of crisps?
So many questions but so little choices....
Suex
Hi DrColenzo
Sorry to hear that you are currently sat in hospital going through all of this.
I hope you get the answers and solution that you want. Let me know how you get on, if that is okay.
Sue x
Hi Doc
Good luck with your op or what ever it is you decide to do. Please let us all know how you got on it is such a big step to make and very scary on what road to take.
God bless you
Terry
Hi Sue
So weird you mention Pulmanary Embolisem! Last week i was called in to hospital after they found a PE in my lung via a CT scan i had done for my COPD. Same as you i am currently taking Warfarin as well as all the other tabs. I will make a point of asking my consultant if they are connected. i never even give it a thought. But you are right, still so many questions and not to many answers or options even! We can only hope for a break through with meds or it looks like its the bag for all of us.
Terry x
Hi Tony,
Yeah i have tried the diet change but dont matter what i eat i am still on the loo. Maybe like you i should persiver with it and try and be strict with what i eat.
I dont understand the J pouch thing. I thought there was only 2 types of colostomy you could have a Loop colostomy or an End colostomy. The Loop one seems to be reversable but im syill not there yet with going through with it it is a huge decision to make.
Can you advise on what is a J pouch please.
Thanks Terry
Hi Terry,
My son is 29 now and is about to have surgery to attach his new jpouch to his rectum so that he wil use his bottom again!! He is fit and a good weight again after a gruesome journey lasting 21 months. I am writing his story as he is busy living his life.
I wish I'd found these forums along time ago. A brief summary, my son was 27 and an athlete and sports coach, super fit, very proud of his muscular and lean body. He was running as he was going in for a half marathon for charity and started to get diarrhea but he coped and thought it was caused by the running. He got much worse and didnt tell anyone and ran the half marathon during a major flare up!
We nagged him about his weight loss and dragged to the GP.He was diagnosed with UC and in 2 weeks he was on large doseages of anti imflammatories, steroids and foam enemas. He responded well and the symptoms reduced so under GP orders he reduced his doseages and all hell broke loose. He was massively anaemic, loosing blood and mucous 20 x in 24 hours. He went to A&E in a state of collapse. He was on a gastro ward and they tried infliximab etc by intra venous drip but it was all too late and his bowel perforated and he had emergency surgery to remove his bowel apart from the last 4 inches or so. This ileostomy left him with a stoma and a mucous fistula. He was at a general hospital and they did their best. He was frustrated by the site of the stoma as it was in the way of his clothes and he couldnt wear jeans for example and also the fistula was close by and got in the way of the stoma bags, esp as it needed a dressing or a small bag too. I dont know how much variation is possible as the stoma nurse measured and marked the site 2 days before perforation, just in case, but didnt talk to my son about lifestyle and clothing etc.
He recovered well and left hosp after 2 weeks. He had a large scar as his abdomen needed cleaning out and keyhole surgery wasnt an option but if you opt for surgery then key hole is good as the recovery is quicker and scarring is small.
My son was told that a third of UC patients recover well with meds, a third require surgery almost straight away and a third require surgery after meds have failed and life is too difficult. On the positive side meds and treatments are being developed all the time so there is light at the end of the tunnel.
He coped well with the stoma and fistula and realised that as long as you have an informed stoma nurse then life is pretty normal, he was not confident enough to swim however. He was now disease free apart from needing Asacol suppositories in his bottom to slow down the mucous production. As he now could eat and drink without pain he put the weight back on and was able to exercise and build his muscles up again. Eating later than 7pm meant he had to get up in the night to empty the bag but compared to life with UC its ok.
By choice he decided to wait about 12 months and go for jpouch formation, esp as his life is so sporty. This worked well and he has been checked and the healing is great so next step is connecting the pouch to the outside. The surgery was in the original scar to make the pouch and remove the last part of bowel (the fistula). The last step is by keyhole surgery through the stoma and then close that up. All of this is being done by the experts at John Radcliffe hosp Oxford, they are brilliant. They do several sorts of pouches depending on needs.
One more thing he did develope a dvt 2 weeks after the first op as the hosp did not send him home with blood thinning meds. Beware dvt is upto 3x more likely for UC sufferers than normal so get to know the symptoms and ask for heparin if you are immobile such as when in hosp.
Good luck to all.
Hi Sheila
wow....... i am so pleased that your son has come out of this with an almost normal life. i will read all of your comments again and take the best bits with me to my consultant when i see him. Thanks very much for all of information
Terry x
Hi All in this discussion, I forgot to mention that my son wasnt keen on the jpouch op at first as he felt he'd had enough of surgeries and hospitals but then the consultant at JR hosp said he needed the "stump" removed anyway as it is statistically more likely to get cancer than healthly bowel tissue. So once healthy again he was keen to get the jpouch and he was only in hosp for 4 days! so what the heck compared to before its nothing.
Also a PE usually starts as a dvt, there is the UC risk again. Crohns & collitis assoc mention it in info.
Its all a steep learning curve and we need to do our best to keep informed. It can be annoying that people on TV say that the growth in IBD is because of overuse of antibiotics and unhealthy lifestyle, my son had 3 lots of antibios in 27 years and looked like Andy Murray, you dont get to look like that by bad habits.
Keep strong.
Hi guys,
Thanks for the kind words - I am weirdly calm about it as my consultant has been excellent and I am informed about everything.
Sheila, it sounds like your son went through the wars but I am really pleased he has found resolution. I am a healthy forty year old and this came out the blue and has been really bad so having a j pouch will be a relief. I am in Milton Keynes General right now but my consultant and surgeon come from the John Radcliffe. However, I am looking at St Marks for the pouch reconstruction - my UC is genetic from my Jewish grandmother and they are the centre in dealing with that type of UC...or crohn's as after my scope this morning they are uncertain which one I have!
Roll on morning and all will be revealed 😊
Hi DrC, Lots of good wishes for your own success.
My son was indeterminate for months until JR Oxford got hold of him and he was defo UC. Feeling confident in your care is half the battle.
We were initially going to get referral to St Marks but changed to JR as we had a personal recommendation from a friend who had j pouch there under Prof Mortenson and was still great after some years. The Prof is formerly of St Marks and went to Oxford to set up his new department. The Prof did my sons surgery and his care and personal attention was excellent. The wards are excellent too as they have many private patients who bring in the dosh, even the food was super and you could ask for food to be sent up at any time in the 24 hours as being an IBD patient you were used to appetite swings!!
Does it feel better or worse being an insider? At least you can ask all the right questions. The being healthy previously bit is good tho as recovery and healing is so much easier and so is the mental approach to aftercare.
What did you mean by "my consultant and surgeon come from JR", are they on loan or formerly at JR.
Stay confident and make informed choices.
Sheila
Hi everyone,
Quick update as I have limited access but just to let you know they are waiting on a surgical decision until the beginning of the week until I get a second colonoscopy done on Monday. There was some confusion as to whether it was crohn's or colitis due to the nature of the inflamation but histology has confirmed this to be colitis so any surgery will be total as opposed to sectional.
Also, things have been put back somewhat by a hospital chest infection because they didn't take proper procautions with my lower immune system due to the cyclosporine and azerthiaprine! However, this time at the MK General my care has been excellent. It is shame that I can only be stablised with heavy drugs as I feel that my colon is recovering but the moment the cortizone stops I am back at stage one, again!
To answer your question, Sheila, my consultant was former of the excellent JR and my surgeon trained under the best at St Mark's - no matter how (quite literally) crappy this disease is we are lucky to have some excellent hospitals that can treat us in this region.
So glad that the good guys are looking after you! Good luck with the decisions. My son's hospital was only 20 miles down the road but it felt like 50 years! the surgeon was ok but the nursing care was pathetic. As I mentioned above he had 9 days critical care, 5 days on ward and then home but developed a massive dvt in his left leg, 28 days post surgery. I'm sure that a lot of his problems were because he was so weak before the op and it was emergency as he had a perforated bowel. An elective surgery will be so much better for you if it comes to it. Have you had a good chat with the stoma nurse about the siting of it, my son's problem was his waistband went over it.
More to the point I'm sure you are knowledgeable about vte risk assessment and so when you go home you will have information about poss dvt s and anti coagulation. The hospital didn't give out anti coagulation meds or info hence the dvt. It wasn't even mentioned. They have changed their policy now for IBD patients due to our complaints so at least we hope to have helped others.
My son is attending Guy's and St Thomas hosp vascular clinic in London for post thrombotic syndrome and is due for stenting in June in the ileo femoral vein. Mr Stephen Black will perform the procedure and we are really hopeful that it will cure his symptoms. This is the only place in UK to do this.
We are very positive about the NHS as long as it works well as i'm sure it will for you.
Hello everyone,
I guess we can now talk about Stoma bags I broke my virginity with one last week!
Just a quick update, my condition went rapidly down and I was operated on with full open surgery and my wife and I found out immediately afterwards I only had hours and minutes before a lethal perforation. My excellent Maltese consultant, Dr Lazlon Miller put it very well after the hassle it took to get me into hospital, 'Frankly, without this your eight year old son would have found you dead in the garden because of your stubborness'. I owe him everything as I have a beautiful wife, son and daughter and realise what I and they would have lost.
So, coming out the surgery was all euphoria and lucky to be alive and it has worked well, but I had a very adverse reaction to the morphine and anaestethic that created my first and only psycotic episode and I asked for a forced twelve hour cold turkey before going onto low dose oral morphine. It is pain you cannot imagine but for some people such as myself who are 'rugger buggers' we have large frames and statistically have this issue more than most.
Let's back to the bag and please allow me to misquote Morgan Freeman as the convict Red in the film the Shawshank redemption as this is how I feel:
"Stigma? It's just a BS word. I'm just gonna go on and change my stoma everyday, it's easy and I'll stop wasting my time. worrying about what might have been Because to tell you the truth, I'm very happy to be alive I don't give a sh!£"
So glad to hear you came through it! Were you separated at birth from my relatives or is it male thing!!
Also my son went in to A&E and was told he was close to death but he hadnt wanted to be in over Christmas so had ignored how bad he looked and felt. Guess where he spent Christmas?! critical care post op, but compared to the rest of the hosp it was brilliant. His first meal was hosp jelly then mash and gravy and then plain ice cream, onto normalish food. By day 9 post op his girlfriend was bringing in pizza as a treat. The digestion process was painful for him as was moving around but as morphine made him sick he swapped to other meds. He was grateful for the morphine pump at first though. Hopefully as you didnt actually perforate you wont develop pneumonia and abcesses.
When my son came home I stayed off work to care for him as his girlfriend had just started her new job. His diet was normal but obviously avoided too much fibre and indigestible items like peanuts, sweetcorn and onions. As he was so skinny due to UC he had snacks such as complan with whole milk. I read up that B vitamins are needed as an extra as poorly absorbed without a large bowel, they are good too for hair and skin as my son's hair was weak because of steroids, anaemia and lack of food.
By the way weird but my son's favourite film is Shawshank and he would watch it at night when he couldnt sleep because of the steroids. He can quote it too. He was born by caesarian and the surgeon was Maltese! We bought a flat there years ago and go on hol there every year!! WTF!
Emis Moderator comment: I have removed the link as it was to a site unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.
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So glad you came through it and are well. I have sent you a long post but as I included a different blog site it requires moderation, darn.
A young girl named hattie writes about her new stoma, puts things back into perspective, if she can do it then so can anyone. Google it for uplifting messages.
My son is now 18 months down the line and eats and drinks anything and doesnt worry about gaps between food and drink and fizzy drinks etc. The windyness is not a problem now. So basically the stoma settles down and doesnt block or fart after a while. It also doesnt smell unless in desparate need for emptying!