Have you had a successful reversal of ileostomy and now have a j pouch? I would love to hear how you are getting on and any tips. 
Hi Sheila, no, I refuse to go under the knife, and the colitis is under control now. I don't knind outow what a J pouch is. I'll find out, sorry but I wish I could do more. I drink my silicated water, volvic.
Do not think I could cope with surgery and pouch only as a last resort. I know that we are all different and maybe after a while that seems the only option depending how bad the everyday symptoms are and how ill it's making you
Hi Sheila,
I thought I would get back to you in one post - thanks for remembering me on the previous discussion.
How is your son doing? I hope he is progressing well.
The surgery was a success and they found that I was about to perforate and was within minutes of being in a very dangerous place. Since then, I have had a slower than expected recovery due to long term steroid and immunosuppressive therapy and I have been on a vacuum pump for weeks - possibly coming off today.
The only issue is the rectal stump, which has started bleeding a lot. So, as I write this I am in Milton Keynes hospital waiting for an appointment with the consultant to see what's up and perhaps get a scope shoved up there. However, I am mobile, eating normally, driving again and really have zero issues with having an ileostomy and stoma bag.
I will have a JPouch done but as a 'backseat driver' in all of this I have been very picky about the options and where to get it done. My view is there has been a push to JPouch surgery as opposed to W, S or other shapes because they are less evasive on the patient and can be done fairly simply using staples, et cetera, However, I have been looking at the history and success rates and have found that some of the early pouches are 30 years old now and were done sewing the sections together and in open surgery using a 6 inch incision. So, I am looking around for someone who can do something I am comfortable with and that might be our mutual associate at the John Radcliffe, Prof Mortensen.
Stewart and Helena, whilst this can all be done as elective option and many people suffering from bad UC and serious symptoms do so, it is usually a case that surgery chooses you and you don't choose surgery. Also, and I cannot emphasise this point enough, there is a lot to be said for diet in reducing UC symptoms but there is also, frankly, a load of toss out there on the internet, UC has a genetic root (as far as well can tell) and very possibly and environmental trigger (I am actually looking into this now) and when it comes, unfortunately, it comes and in a third of cases it is controllable with drugs, in another third it flares regularly and surgery very well may be an option and for the final third, my lot, it will be surgery no matter what. The whole thing is bloody scary, trust me on that I have been through it but it is a far better option than my two children losing a father and my wife becoming a widow.
Best,
Duncan.
Hi Duncan ,so pleased to hear the surgery has worked for you. My son was in your situation in Jan 14 and as you know his ileostomy was emergency as he had perforated.
He has just left hosp as he is fully reversed now and getting to grips with his new life. It has worked v well so far and his 2 surgeries were performed by Prof Mortenson at JR Oxford. We cannot fault the care and consideration and his 2 stays in hosp were exceptionally good and short. His first was in the existing scar just below the belly button and the second was key hole through the stoma.
As you say there are different types of pouches and these were discussed with him at his referral, some suit better than others.
By the way The Prof is semi-retiring soon and will only work some days, but his team seem to be great.
My son's new plumbing is working well and as he has still got his rectal muscles ( which he has been practising to use to control his toilet going) he is enjoying the changes in his lifestyle. He wants to swim again and get to the gym, both of which he was too self conscious to do.
I was hoping to get some feed back from someone who has gone through this recently to pick up some hints.
Good luck with your choices, as my son said he felt he was one of the lucky ones and was able to have a choice.
He had symptoms like you with discharge from his rectal stump and mucous fistula which were controlled by rectal suppositories, but he was delighted when the stump and fistula were removed in the first reversal surgery.
....then why did you reply?
Only necause I thought my experience with UC might add something.
having had a reversal means there is no UC left! But thanks.
Hi Sheila,
Just to let you know, I had to go back in for pancreatitis for a couple of days - woke up in agony at three this morning and came straight in.
Ho hum, like your son I was very sick and had major surgery - it takes time to recover and problems will, shall and do arise :-)
Best,
Duncan.
Is the pancreatitis related to the UC or the surgery or just something that anyone can get?
Did you take note of Prof M's intended semi retirement?
At least the tennis is on!!
Tennis is being watched!
It appears to be related to either the long term immunosuppressive/steroid therapy or the CMV virus that finally pushed by colon over the edge and turned my UC into a serious form.
We review in 24 hours - I want to go to Kyoto for work in August! Not fair!
Damn bad luck. I hope they let you travel and are well enough to go.
Beware of raw fish!
My son at Wimbledon watching Wawrinka on court 1, hope he enjoys the day and doesn't get dehydrated!
Hi Darren, how are you getting on?
Son still doing very well, no probs with food or the "other end". Really quite amazed how well he is healing, still has a change of dressing every other day but should be healed to the surface by Monday and no more dressing.
Keeping fingers crossed that it continues as well, he wants to start building some muscle again.
He used Asacol to reduce symptoms of Stump with UC but nothing now as no disease!! Yippee.
Not sure which was worse, UC or the drugs.
I'd say it's the drugs! Asacol is vile, gave me wind and couldn't leave home because needed urgently to use loo on Asacol. Changed my water and am normal.
Asacol was useful to reduce the UC symptoms from still having some bowel with UC.
Some mucous like secretions with some blood, took Asacol, secretions reduced.
I'm sure water from a different source can be useful but sometimes the disease has moved on.
Hi Sheila,
Just a quick update. The 'pancreatitis' passed very quickly so it may have been something as simple as a blockage or similar, the amylase was up to 1000 then dropped right down to 100 within twelve houes, a bit quick for pancreatitis. The treatment of IV fluids, liquid diet and rest is the same for both conditions so until a CT scan we won't know much.
I am hoping it is not pancreatitis - if I cannot have the odd beer, fine but then I want to follow my active pursuits instead and these are on hold due to open surgery and waiting for my abdominal muscles to take a year to recover. Life would be fairly boring on a restricted diet and not being able to do outdoorsy things instead :-(
Oh, and I left hospital after a few days and for a couple of those I wasn't sure why I was there at all!
Good News Duncan that you are feeling better and home.
Individuals heal better than others and only you can judge when you are ready to exercise again so maybe you can be out and about and pushing your body earlier than others.
Hope the pancreatitis turns out to be a phantom as you hope. Aren't you on blood thinners and therefore not meant to embibe much anyway?
Take care.
hi shelia i hope im not to late to join your discussion , my son had his J pouch surgery in march 2014 , after spending 2 years with an ileostomy due to the side effect of toxic mega colon from ulcerative coltis , to be honest i was looking for help myself on this forum because since the J pouch surgery it is like he has reverted back to the original ulcerative coltis symptoms , the consultants from the childrens hospital has suggested possible crohns disease , after an endoscopy , the QE has reviewed all his tissue samples and stated that its not crohns its UC still ? he has a macro perianal fistula and ulcer, erythema and ulcerations throughout ;neorectum; small bowel, 30cm from anus, micro with severe active inflammation , granulomata, possible pouchitis, his got tracts below the sphincters, he has persistent diarrhoea and abdominal pain since the J pouch and now and again sickness, when he stands up he instantly needs the toilet , he has not been able to go out for over 1 year , in 2012 he some how developed a condition called acute generalised exanthematous pustulosis / red man syndrome so most antibotics he cant have , his infliximab was stopped 2 weeks ago because of active infection , his azathioprine was stopped due to a previous neutropenic episode in 2011, the antibotic he can have they wont prescribe , and i dont no what to do , is there anything that you had done that improved your outcome i would be willing to try anything at the moment , his own gp will not even see him and tells him he has to see his consultant , i just think there must be something i can do to help him , like diet/ medications / herbal / anything , any help anyone can offer i would be so grateful ,
I am so sorry to hear of your son's medical complications, it is so cruel that he has so much to deal with.
My son had UC for only a short time and the meds were only able to contain the worst symptoms and he was on his last hope of recovery with Infliximab when he perforated in 2 places and had emergency ileostomy, stoma and mucous fistula formed. You son's medical problems are too complicated for me to understand, were they fully recognised when he had the pouch surgery? My son was at first diagnosed as indeterminate for UC or Crohns but the good guys at John Radcliffe Oxford were able to be 100% from his results that it was UC so went ahead after about a year after the first op, in Feb15.
The hospitals, St Marks London and John Radcliffe Oxford are the top in the country for IBD and not only treat but undergo all sorts of reconstruction surgery after cancer etc. We cannot fault JR and I know many people who would recommend St Marks. If you asked a GP who had IBD where they would go it would be to one of them.
That is all that I can help you with I'm sorry, we had poor experience which lead to our complaining to the Ombudsman,after treatment at the local hosp who were not really able to cope with the level of disease my son had. In hindsite I wish we had been referred to the other hospitals as soon as he was diagnosed.
Is QE the one in Birmingham? it has a good reputation but are not necc specialist in IBD.
JR in Oxford told my son that they have no patients who had pouchitis that wasnt completely cured and very low incidence of it anyway. The only thing that we thought he might need was a diet thickening additive which would help him to have more solid output, available on prescription, but so far he hasnt needed it.
He went ahead with the pouch surgery because he was told that the worst case scenario was that if it didnt work for him he could always go back to the stoma.
Have you asked for second opinions? A referral to any other hosp is easily done via your GP.
Good luck to you both, Sheila