anyone recommend surgery?

I am more than happy to answer any questions at any time. I only found this site as it looks like my 21 year old daughter has UC. She will undergo a colonscopy on Wednesday. She will be 3rd generation sufferer so I have made it my mission to make sure we try and keep her as well as possible. Hereditary food intolerances seem to be the key to the disease in our family so she is on a strict lactose/gluten free diet, red cabbage juice 4 times daily, lactose/gluten free protein shakes, soft bland food and good probiotics. This regime has been really succesful so far in reducing flares and allowing the bowel to heal. Once she has had the colonscopy we will have a clearer picture of what we are dealing with.

I'm in Australia so it's mid afternoon here. I'm really happy to have found this site. I was an unofficial counsellor for our local ostomy association for quite a few years so I have spoken to dozens of people contemplating surgery. I am still called upon every now and then to give support and advice. The Australian Govt is initiating mandatory bowel screen kits to be sent out to everyone over 50 as we have such a high incidence of bowel cancer.I have been a guest speaker at several seniors events to discuss life as a "bag" lady.

Hi Louise.....I had my surgery after suffering 26 years....on reflection should had it years ago. I no it's only been month today but already I feel so much better . The bags have been easy to deal with. Having said that wish they would invent one which is easier to clean or I just haven't got the knack yet lol . I'm still trying out different ones. Any hints or tips gratefully accepted.

My 28 year old daughter has just been diagnosed with Crohn's unfortunately.  My son also has ibs but is for undergoing further tests to check if it could be uc or crohns ! They also have miserable time with symtoms albeit not severe at present ! MJ

Hi....u r not having it easy at mo and would u bel beve u about the 6 th person this year I have heard of having broken their wrist. It appears to be something which is easy done and majority if not all I have heard of are mid age or slightly older ! We do not bounce as well ! My sister who is a health professional was saying lot  people who end up at A and E are result of falls and it should be advertised on TV . Another one of those health ads. I think we must tend not to be as careful as we should be as we age with regards to possibility of trips or falls and we definetly should not be climbing up anything without being super careful ! Anyway I hope it heals pretty rapidly as having it will also delay surgery time for u. Give u more preparation and rest time. Having said that am sure u could very well do without having had it happen to urself ! I wish u well with a speedy recovery ! 😊 MJ

Hi maryjo would you believe I had made an urgent toilet stop in the small town where I live parking right outside the loos with my 'can't wait card' displayed in windscreen. The loos had just been cleaned & the floors were wet as I walked out across the pavement to my car few feet away my flat shoes went from under me. The ladies that stopped to help said they heard me hit the ground! I think I swore! Lol On the up side the loos are next to the doctors surgery! I'm coming up for 59 have mild thinning of bones but been on steroids since September 2013 so take calcium tablets( when remember ) & another specific calcium tablet on same day once a week. Will definitely take my calcichews twice a day now! 

It's so gut wrenching when your kids inherit these awful diseases. I always hoped that my girl's would dodge the UC bullet but it's not to be. Although medications have improved over the last 30 years it frustrates me that Dr's don't place more emphasis on healing the bowel through diet instead of just prescribing more and more medications. We're obviously doing something wrong as these diseases are becoming more and more prevalent. Thank goodness for Google as I am learning so much about nutrition and natural anti-inflammatory foods. My daughter Beth is my guinea pig at the moment, and we seem to be having some success with changing her diet etc. If only the pharmaceutical companies were interested in testing natural remedies , but unfortunately they can't make money out of cabbage juice so we just have to rely on anecdotal evidence. When it comes to bags, I only have to change mine every few days. Have only had 4 or 5 accidental blow outs in 28 years! In the early days I used to rinse the bag out whenever I emptied it, I haven't had to do that for 20 years. I used to have a plastic squeezey sauce bottle in the bathroom to fill with warm water and swish around.  You can get those refillable flat plastic drink bottles that fold up flat which you could probably keep in your purse when you go out. Just make sure you have an emergency kit with spare supplies in your purse( I use a make up purse) . I also keep a kit in my glove box. Just be aware that the glue on the appliance can perish with time so I always put a fresh appliance in the bag once a week.

That was dreadul and so easy done.im sure u swore ! I would done plenty of it lol. Re bones I actually have osteoporosis.....I take calcium and magnesium mix tablet. From googling one is advised to take half the amount of magnesium to calcium, Vit K andVit D for processing and building up matrix in bone. Re the one a week I took it for while but used to get pains in bones. After googling it ...it had more bad things going for it than good so quit it. If u google that lot on alternate type supplements for osteopoenia and osteporosis u will get lots of info. Actually last time I was up with consultant who deals with it they are now advising patients routinely re Vit D . Rebounding on the mini exercise trampoline is also good for bone building. It's actually got a host of benefits if u google it. Anyway I hope u get better soon .Big birthday due soon ! Lol I had mine last year ! 😀 Take care MJ 

I know...u hate to c them with any of them as u know what u urself have been through. Mind u I suppose more in latter days as there was not the Internet early days of my disease I discovered re diet and alternate stuff. There is so much out there now. I had quite lot of food sensitivities....I wouldn't been able to take cabbage juice...Prob cos my bowel was in such bad shape. My surgeon said when he had taken it out he wondered how I'd any toilet function whatsoever as it was so badly inflamed ! Couldn't take yogurts or fruit either amongst other things. I take u r using the double system bag. I am trying out the drainable bag u change every 2 days at mo. We get our scripts free here luckily...as these things r very expensive. Was thinking of trying the other type as my skin is sensitive to some of the adhesives used. Do u change appliance once a week that is adhered to ur skin...didn't quite understand the last sentence re it . Have u read up on psyllium husk and psyllium seeds re ur daughter. I found mix of them was good antiinflammatory when I still had my bowel MJ

Your skin will be sensitive for a while. I use a drain able bag which I can either stick straight on or I add a round wafer like adhesive ring which I stick on to the skin first then the bag just sticks on to that. I just peel the bag off my skin every 3-4 days. You can feel when it starts to come away from your skin as you can get leakage which burns/irritates the skin. Our products are provided free as well, thank goodness, and there are always new products you can try. A word of warning, too much roughage will cause a lot of discomfort around the stoma and can cause your appliance bag to come adrift. Raw apples are a big no no for me, especially the skin. Corn chips, corn raw veggies can also cause problems. It's trial and error. You'll also be losing a lot of fluid until your bowel settles down so stay well hydrated!

I would had previously had sensitivity to band aid type material anyway. It only seems to be certain adhesives . Understand re ring now. Do u find ring more convenient or is it for reason .i keep bag on for 2 days. Yeah i was told to stay on low residue diet for 6 weeks which I have more or less adhered to. I had first piece of fruit last nite ..a pear but I peeled it and don't seem to hav had any after effects yet anyway lol . My fluid loss does not appear to be too bad but I drink a lotta lotta tea lol . I must get the plastic type bottle thing . Have not got small bag or purse yet for emergency kit. Have just thrown spare bag in my handbag so must put one together ASAP .thanks for that .MJ

I use the ring because my stoma doesn't stick out as much as it did and if it sits too flush with the skin I had more leakage. The ring helps with this. The only thing I can put it down to was losing a fair bit of weight last year.  It's been a really stressful week, so off to bed. At least my girl's are home from uni for the weekend, looking forward to Mother/ Daughter time tomorrow. Looking forward to hearing of your progress, no doubt we'll be in touch now I've found this forum.

yeah have read about that. ..mine has got quite long spout. My stomanurse says it's a beautiful stoma lol. Long may it stay that way...I live in fear of getting a hernia so am trying to be careful re lifting and gentle exercises. Anyway nice chatting ,talk soon and have a good sleep ! MJ

and enjoy ur time with ur daughters tomoro ! 😀MJ

Hi All, just a reminder that IBD patients have stickier blood so do watch out for DVTs especially if you have had a trauma such as a break.

Good luck to all.