Hi, I'm a new member but I've been reading this forum for 3 years now. It has been and is so informative and immensly supportive so I thought I'd like to be a part of it. Can't think why I did not join before (Actaully do know -I'm superwoman you know -can do anythng and nothing can defeat me, only now it has!)My pouch was formed in 2005 and has never really worked well. For me 20-25 BMs per day is normal -I'm ecstatic when its down to 15. I've recently had 4 serious blockages(in less than a year and half) -hospitalised for all and fortunately they have all been resolved without surgery. They are usually inflamation, air and food. But each one takes me 5 weeks to recover. I'm tired now and fearful of facing the next one. I have two areas where there are pronounced kinks where the intestine almost turns back on itself, adhesions and radiotherapy scarring so little chance of it settling down I suppose. Life is hard - tied to the toilet, exhausting, sore -its all too much now. I work, have a beautiful 8 year old daughter and a wonderful husband who has coped with sick me for years now (I had another cancer before this one so it been 16 years of illness). Maybe going to an ileostomy is the answer but I desperately don't want to -was very unhappy with it in the 2 stage pouch formation. Could not accept it -I know thats pathetic! Also have been told there are no guarantees so could still end up with blockages so not a huge advantage -well, except that I would not be quite so tied to the loo. I'm so tired.... not looking for answers here but just wanted to tell someone who knows how I feel. I'm going to try VSL #3 when I'm better. I take loperamide, codeine to sleep, psyllium husk to help control things during the day, so sometimes its OK but I do 'live' in the toilet. I was told it would change my life - its did - life is much worse than when I had UC and maltoma and so I'm really petrified to have any more surgery. Anyone got any ideas they'd like to share. Thanks in advance for any support.

Welcome to the site and I'm so sorry things are this hard for you. I just had my second surgery and things are going well so far, so I really have no specific advice, just wanted to let you know that someone is at least listening.
Good luck in whatever path you decide to take.
Jenny

Hi Annemarie, I know how you feel, I too had many probs and always sick or controlled by the visits, I just went back to the ileo, I am happy and more importantly my family is happy not seeing me sick all the time,and now I can do things with them without being a distraction, I too dreaded going back to the bag,but guess what? Its is not bad at all,I wish you the best in whatever decision you make!! Be well, Ed

Why wait until "you are better" to add VSL-#3? It just might help resolve some of your frequency. I have found that when I am consistent on VSL, and cut the amount of food I eat down some, I spend less time on or looking for a toilet. I also found once I was diagnosed with fissures and spasms of the sphincter and began to treat those, I have gained more control and feel better. Not a cure. . . but a good maintenance routine.

Debra,

Thanks for your reply. I thought I'd wait as I am only just starting to eat again after the recent hospital visit - does that makes sense or do you think its worth going ahead. Am very thin and on supplements too to try and get the weight on so unusual circumstances and I'd wanted to compare what is ormal for me with me plus VSL. Do you have to eat less with VSL -I don't eat a huge amount as it is, and how many sachets do you use?

Ed,

Your message is encouraging. Can you tell me a little about the surgery - was the recovery time long? Was it keyhole? Do you have an end iloe or loop - can we choose?

Annemarie

Annemarie,

I too had issues with intestinal blockages, and my surgeon encouraged me to undergo laproscopic adhesion removal. There are not guarantees they won't grow back, but for me, I have not had any problems since. Most surgeons will not do this surgery but if I was in your shoes I would find one who did and go for it. Better than living with continual blockages and hospital stays.

And like Debra said, give probiotics a try. They made the biggest difference for me than anything else. Don't start with a huge dose at first though - "ramp up" slowly so you don't have to deal with gas issues.

Steve

Hi Annemarie,

That sounds bloody awful. I know how excrutiatingly painful those blockages can be.

Living on the loo is just insult to injury. I didn't like having an ileostomy which is why I opted to go ahead with j-pouch surgery (after several years of fooling myself in to thinking i'd ever find a convenient time to face my surgical fears). If it doesn't improve my quality of life I will go back to an ileostomy.

Re blockages, if they are that frequent can I suggest that you literally liquify all your food and eat smaller portions, give your gut a rest. Its so draining recovering from a blockage.

I know how scary the prospect of any surgery is. Try the non-surgical suggestions here, if they don't work at some point your going to have to face making a choice. Most people will choose unhappiness over uncertainty.

You know your in the right place to seek advice and support and I'm glad to see you taking action to improve the quality of your life.

Take care,

Dan

You don't have to spend a lot of money for a probiotic..Unless you don't notice any help. I use a brand that is avaiable here in the states at just about any grocery store(PB 8). It costs about 10$ for a month supply...
I too have suffered from blockages. This last time around I have had a total of three partials since January. They certainly are no fun!
It sound like you need to get some of these adhesions taken down..Not loose your pouch..
Julie

Thanks all for your wonderful advice -dealing with yet another impending blockage today so on the chicken soup for a day or two. I'll check out other posts and PB8. I tried Cuturelle and it made things worse which is why I thought I'd try the Rolls Royce version. Going to do everything I can to keep the pouch if I can get an improvement in quality of life. Seems such a long road but I guess things could be worse.