Advice Please

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.

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 😊

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.

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!£"

I promise to Google Hattie's post and have a good look.

We certainly have a few coincidences here, particularly the Maltese Connection. The Maltese are descended from Jewish people in the Med and I am assuming there must be quite an interest in gastro work there as the same genes must produce the same incidence of crohn's and colitis that people such as myself get from our Jewish side. Our place will be in Santornini, Greece, however as I have a certain Greek beach gypsey mentality that my wife compares to Tom Conti in Shirley Valentine!!!!

Feelng a little post pain killer whoozy right now and will post more later but just remember, for all of us whether we are a suffer or relatives of those who suffer there is now real pain, nor real stigma nor real concerns - this can be fixed and lives can be made better and one day this will just be a disease of the past taught about in history classes. For now, however, we just have to get over the hump.

All the best and I will be in touch soon.

Best,

Duncan.