Hello
I had UC for 15 yes and had a j pouch for 13 years. It never really worked well and ended up requesting my surgeon to let me go back to a stomach. 2 weeks ago I had the pouch and rectum completely removed, yes it was painful but am off pain killers now and have started walking around the block and a bit further everyday. I am really pleased with my stoma now, it has been the best thing I have ever done, no pain, no rushing for the loo. I can sleep, I have never slept so much. What I want to know is when can I start doing things, you know like lifting the kettle for starters! I haven't been given specific exercises or instructions on when I can do what. I want to get back to normal family, you life with husband and kids, what is everyone else's experience. I have looked on line but tend to end up on sites selling stoma products which aren't really helpful. It would be great to hear from anyone that has been there or going to be there. Thank you in advance. Alison
Hi Alison
I haven't got a permanent but had my op in sept 2015 and have a baby boy who as you can imagine was desperate to pick up still I did as I was told and waited for at least 5 weeks but I would say by the 6th week you will be able to lift the kettle etc what you are doing is great little more day by day just don't over do it as its only been 2 weeks now I'm back to normal sorry to hear the j pouch didn't work for you but great news that you will have no worries and will be able to sleep good luck X
I'm waiting on the same operation...but the surgeons dont seem to think its urgent.
From my previous ops, stoma after my colon removed then the reversal i was up and about after a few weeks, but took things as it came. I wasn't heavy lifting or anything strenous for months afterwards, but was driving after 6 weeks and doing pretty much most normals stuff.
Your body soon tells you if youve over done it...
Hi Alison, hope you are healing well. Did you have open surgery or keyhole? Whatever way I suppose light exercise is in order. Did they say no driving for 6 weeks? My son had open ileostomy surgery so had rather painful recovery as abdo muscles cut. He walked as much as he could, which was what was recommended. He went back to work after about 4 weeks but then he was young and stubborn. I think you need to follow your body and do what you can. My son took painkillers as movement was painful.
There are a few discussions on here post ileostomy.
I am sorry your pouch didn't work out, my son had his connected last July and it is very successful but then I think the treatment has moved on. He only uses toilet 3 to 4 times a day and is pain free and in control. His only problem is remembering to drink enough liquid and avoiding cramps.
I wish you well, this UC business is a bi*ch isn't it?
Sheila
It must have been very hard not picking up your baby, both for you and him. I know it's only two weeks but I am going stir crazy. I have 2 teenagers and it's tricky getting them to behave at the best of times, especially since they know they can get away with stuff☺ pouch surgery has moved on good luck with yours. I think I was just unlucky. If it works it can be life changing. I am really looking forward to making myself a proper brew! Thank you x
Hi sheila, it started as keyhole but I had a lot of adhesions and sepsis so ended up with open surgery. I was a bit surprised when I woke to find a 2 hour op had turned into 8. I had an epidural which worked really well as pain relief for the first couple of days, then morphine am now down to the odd paracetamol, it is amazing how quickly the body recovers if you spend a lot of time sleeping! I am aiming to get back to work in 8 weeks, 6 weeks is impressive, your son must have recovered well. It looks like walking is the thing to do so I will keep up with that.
It's great your sons pouch is working, it can be life changing.
Yes UC is a complete effing bi@ch!
I will look up ileostomy posts thanks.
Alison
Hi Alison
It was very hard as he is my first and was only 6 months at the time of my op still it's given me my life back so just keep in mind once you are recovered you can enjoy life to the full remember early stages of recovery you are more prone for hernias so take it easy I'm normally 100 miles an hour but the thought of more problems made me take my time you can get these support belts I can't say the name on here as it will get blocked but do some research keep us posted on how you get on xx
Good Morning Alison - I've had an Ileostomy but like Rachelle it's not permanent (yet). It sounds like you're making good progress physically and mentally which is terrific to hear. I had my operation in early October and am close to full strength. To be honest I did little until I got a Hernia belt and had seen the Surgeon in January. I can do most things and recently erected a Green House and have spent some limited time digging the Allotment. Having said that I'm very cautious about lifting anything heavy using abdominal muscles. My diet is the same as before but we are a fish, veg, fruit, and unprocessed meat family. It is likely that I'll try to keep the temporary Stoma for as long as I can. I am worried about a Pouch and know someone who has a disaster with one but I'm also worried about having my Rectal Stump (gross expression) removed because it can cause particular problems for men. Sounds like you're on the right road and I'd be interested to hear how things are as you go from Strength to Strength. Best Wishes Chris G-H
Hi Chris, thanks for your message. If I had known then what I know now I would have stuck with the ilesotomy and not had the reversal. I was always hopeful that the pouch would get better but in the end I was living with serious UC symptoms without a colon! I understand your reluctance to get the reversal as you sound like you have your life back. For many, the pouch is a game changer, just not for me. There are lots of posts on here about success and failure, but I have to say mainly successful. I have bought a support belt, but not one of those medical looking ones, it was from a site in Germany. I copied it have made a few myself, they are a godsend. Make walking without holding myself together a whole lot more comfortable. Rectal stump is perhaps the most horrendous phrase in the English language. I had a lot of swelling down there initially but it is healing well. Did have bladder issues for 10 days but all back on track. You should talk to your surgeon if it can impact on men more specifically. Get lots of info before you make your decision, it's good you are not in a rush. I feel positive about my recovery hearing from others on this site. I will defiled you know how I get on. Thank you. Alison
Hi Jon, it's good you can take your time. It really is the best thing I have done. No more rushing to the bathroom, no urgency, no interruptted sleep. Finally I don't have colitis. I can wait 6 weeks before I drive. You are quite right I am just going to take my time. Thanks
Hi there Chris
Glad all is going well for you.. I sort of feel the same some days I think is it worth all the ops to come or just stay as I am ? but then if I don't try I will never know (for me) hard for women as it affects fertility for the next op j pouch so will be holding off for a bit and see what happens ..and if it doesn't then I will be going for the j pouch I know it's not for everyone but even if I get 10/20 years or forever that's got to be worth the process .. Are you in limbo too then ?
Hi Alison
So did you suffer bad before the j pouch and having 13 years was it always difficult to manage that's my fear I was so ill Toliet up to 20 times per day and heavily pregnant which my flare never went until i had my colon removed.. Also did you take any medication as I was on everything and wouldn't ever want to do that again lost my hair had hives night sweats life was a living nightmare.. Having a stoma life is so much easier and stress/ drug free any tips or advice would be great X
Rachelle - Limbo is where I am at. My Consultant has said that at a Conference he attended last Summer the majority of his peers favoured keeping the temporary situation as long as possible with the patient being examined annually. This is Okay for now. The Surgeon who carried out my Ileostomy is keen to carry out a J Pouch operation. When I asked how many him and his colleague carry out it transpired that they do very few although they've been trained for the operation. That worries me some. If I make the bag permanent then removing the Rectum is fraught with danger. I an 58 and recently remarried and although we don't want more children I am scared by the possibility of becoming impotent. The choice is so damn difficult, so, for the time being the status quo is fine. I'm not feeling brave enough to make the decision quite yet.
Hi Rachel le
Yes I was on everything going before my original surgery. At the time treatment for colitis was pretty minimal. Steroids and mesalazine. I was in constant flare, the only time I was well was when I breastfed my youngest. So much so that I kept it up for a year, not sure what was going on but it kept my symptoms at bay. It was only after my second was born that I got seriously ill, I went down to about 36kilos. Not good. Once I got the j pouch I had a few weeks where things improved but then very quickly I got pouch it is. The rectum became very sore and still had ulcers. I think if the rectum had been removed I might have got on better. There wasn't much that could be done other than anti biotic, I was on them almost permanentlyrics, I was going to the toilet 10 to 15 times a day. I found it couldn't sleep at night, anxiety about the pouch failing and just going to the bathroom. I was completely exhausted. Where necessary I asked to go back to a stomach, had to jump through lots of hoops. I took VSL a prebiotic, very hard to get, it didn't work. A period of very intensive antibiotics, ciproflaxen and metronidazole. I felt awful, terrible side effects effects, the worst being constant stomach cramps and nausea. I didn't lose my hair fortunately but I wouldn't want to go back to that period of my life. As you say life with a stomach, even after just 2 weeks or so has changed my life for the better. Obviously I have pain from the surgery but no colitis pain at all. I feel free for the first time in in over a decade. I take 8 loperimide a day but that is no hardship. I have never met in person anyone else with a pouch. So really only my own experience go on. Having the stoma is easy and not to put to fine point on it access is much more straightforward. I can see my skin and look after it more effectively. Some people must have had success i am sure, but for me I wish I had done this sooner. If I were you in would get as much I formation as possible, see if you can find out howhat many pouches your surgeon has done, success rates that sort of thing. It would be good to know whatever you decide, good luck Alison
Progress at my end already! Hassled the surgeons and I now have my pre-op on Thursday for the op next week!
Looking forward to to no more rushing to the toilet and getting some life back again.
Hi Chris
Yes I can totally understand your situation it's a shame we don't know certain things for our future still that's life I thought I'd never cope with a stoma which I was very wrong so that says something for sure.. That's strange your surgeon said that mine said there is a 5% chance of pouchitis and 95 % are pretty much back to normal well up to 7 times per day. But like Sheila's son he goes 3 times per day.. Would you consider another surgeon maybe for me this is so important I was 2 hours from home to get the one I wanted plus two of my friends have had the same and j pouches and live happy life's now so there is always hope !!
Yes!!!! Well done Jon you are nearly there keep strong and wishing you lots of luck and quick recovery for a good life back with your family keep us posted !! 😉
Thank your for sharing your story with me means a lot since being on this forum feel like I've made some faceless friends but great support and advice I wish you all the best xx my friend I've met along the way since my stoma has had hers for 23 years now and lives very happily so no more pain and sleepless nights you have your life back and live it to the full!! Take care X
Hi Guys, Let me update you as I have been reading your latest posts. So difficult for you to have to make such hard decisions. We were having to make those just over a year ago and I worried about whether the pouch surgery was the right decision. But my son was keen as he said it was possible to go back to the stoma if things weren't as expected. He had great chats with the stoma nurse and was reassured about the very low chance of nerve damage which could affect his sex life and chose not to freeze his sperm as he felt confident that all would be good. He was assured that if the worst happened a pill would work! He is fine!! If only we could see into the future, we thought that last year. I am so delighted that he is so well and happy and confident. He still goes 3 to 4 times a day and nothing at night. He worked hard to have good muscle control in his rectum and can delay if on a journey for example. He is a sports coach so being able to run around and not worry about leakage etc was a driving force. Having the fistula and RS ! removed was wonderful, no more symptoms, no more meds. He says he has forgotten it all as he has moved on. He hits the gym, swims and runs and plays all his fav sports without any self consciousness. He has had 33cms of stent fitted in his leg and abdominal vein due to having post surgical DVT so is even better than a year ago. Such a shame that he had all of this cr*p to deal with having had no issues until 2 1/2 years ago. Remember JR Oxford do the pouch surgery all the time, excellent team, brilliant at keeping you informed and after care brill, Prof Mortenson is a hero.
Good luck to you all, Regards, Sheila.