ive had uc for 5 years white blood count is through the roof tried every med and now i need surgery

Hi Jason - please don’t despair. I had UC for 5 years during which time the drugs were ramped up. After 2 severe flairs I had an infusion of Infliximab which had no effect. Left with no alternative I had an Ileostomy two and a half years ago. It’s a five hours operation, serious surgery and the recovery is slow. Having said that I’m fully recovered, in good shape and have said goodbye to all the drugs some of which can have nasty side effects. I’m a 60 year old man and am very active; dog walking, gardening and busy with various Societies in our Village including erecting Marquees. The Stoma Bag is not a big deal for me and in some respects is more hygienic than going to the toilet conventionally. The downside, I suppose, is the inevitable fact that you have a bag stuck to your abdomen which can affect you mentally and have an impact on relationships.  At a later stage you need to deal with what’s glamorous termed the Rectal Stump which is the short bit left inside your anus. It is possible to have this reconnected which has pros and cons; you should read about this. It is called a Pouch. For a number of reasons I decided not to have a pouch and have the Rectal Stump removed. It another five hour operation but you’ve normally a couple of years to decide.

When I look back to the illness, treatment, drugs and misery I suffered with UC I feel the surgery has given me my life back.

Hi jasonjason

Very well put Darasdad1! 

My story Very similar to Darasdad1 except I’m a 61 year old female. 5 years of meds with no remission. Op Feb 2017 for bowel removal & Stoma bag & a second op just 3 weeks ago today(!) for removal of the rectal stump so now  I have a permanent bag. I’m excited about the future without feeling so ill & never being able to plan anything.

I wrote on this forum about my first op so if you look back to Feb 17 under my name you can hopefully read about it.

If you decide to go ahead then my advice would be, Ask loads of questions to the colorectal surgery team & ask to see the Stoma nurse & discuss. Also ask for trial Stoma bags to wear on abdomen before op, which you can filled with crystals that swell slightly, simulating a working bag. . I have very sensitive skin so that was invaluable to me. I got through about 8 on the trial before finding the one that didn’t react with my skin & that’s the type  I’m still using 13 months later.   I also wore them out to family & friend occasions & then before going home asked if anybody noticed anything different about me? After the had your haircut? Lost weight? Etc I said No I’m wearing a Stoma bag. They had absolutely No idea.

 I’m happy to answer any more questions you may have. B 

Thanks ever so much for your replies. Is it possible to have the stump removed at the same time as the bowel? What did you find hardest after surgery? 

I think it’s unusual to have everything removed at once, not unheard of, but unusual. I’m my case I was weak because I’d been so ill and that combined with surgery made me feel flat and fragile. Having said that I walked the dog for an hour 2 weeks later and drove the car then too. I got used to The Stoma quickly, especially with the help of the local Stoma Nurses. I always felt as though I was in good hands. I wish you the very best of luck and if you do have surgery hope you’ll find yourself in the same place as myself in a years time.

my mother has had her colon removed, she is doing ok though its best if you find a doctor who can do the whole surgery in one instance.  for my mother the surgeon gave her a bag while her insides healed to then do 2nd surgery for reattachment of intestine to rectum.  She had a nightmare with the bag and it was hard to see her suffer.  Not sure if the Dr had to do it in 2 parts since later that year I knew a gal at work who had cancer of the colon and got the whole thing done in one surgery!

might be too late for you to avoid surgery but this is what got me in to remission for 5 years now,

Hi,

ask for mesalamine enema from doctor to get rid of blood, do some googling on enemas to familiarize yourself with them, there no big deal!  If the dr says he wants to give you suppositories instead, refuse and ask for enema...DO NOT GET cortisteroid enema, stick with mesalamine! don't take the oral prednisone they will try to prescribe you or oral mesalamine, etc..

don't use bathroom for enema administering like most folks say to....tell spouse to stay out of room, lie on your bed, with trashcan nearby or windowsill for used enema bottle....put 1-2 pillows under the pelvis and a towel on the bed for spillage, a little extra vaseline is fine, go to sleep.....once you are able to keep one in overnight, try and keep it in, in the morning, and then put another one in....you may have to work up to this do a headstand to use gravity to pull that stuff in to your intestine and not just the rectum, just walk your feet up the wall of your bedroom while on your bed. If you aren't able to hold one in even for the night or even 30 minutes, don't get discouraged, keep trying! It will happen!

but after you are able to keep one in overnight, if you see improvements, like pink instead of red, then you are on the right track

if you do see improvements, 1st off try not eating red meat..

drink natural coconut water 1-2 liters per day, served cold from the fridge and then over ice, makes it sweeter tasting

eat 2--3 coconut milk yogurts per day

get 2 bottles of inner-eco coconut water with live probiotics from whole foods and use about one bottle per month a sip a day...if you start to run for the border or it cleans you out, then take a week off and then start back up again, eventually it will just keep you maintained

reduce fiber intake!!

watch for other foods that may be irritating you and remove them from your diet, dairy, salt, cured meats, maybe gluten, 

eat soft foods like eggs, avacados, berries, yogurt...no citrus

If you find this all works for you then maintain the quantities for up to a year, except the bottle of inner-eco, you can back off to one every other month or maybe even one every 3 months, just listen to your body...after a year lower quantities of coconut water, and yogurt but keep them in your regular diet!

stay vigilent, don't just think you are all better and throw caution to the wind, but after a year you will be able to eat some of the things you used to, just don't go coo coo crazy  I didn't eat red meat for approximately 3 years, but ground turkey thigh is good and chicken still on the menu, laid off pork for a good while, lamb seemed to be acceptable to my system.....

good luck, god bless