Elective colectomy for UC

Not yet maxine. Not sure it is happening now. See above 😣

Oh Karen am so sorry for you. Hopefully they may now what is causing all your symptoms. I know what it's like when are going through all the testing and the fear it causes in your mind.You are obviously a very strong woman to have been going through all you have been through and I know you get sick of people telling you that but it is true. I truly feel your pain hang in there and keep fighting for answers. You can cope with most things once you know what you are dealing with. Thinking of you I won't tell you to be strong because I know you are. Good luck keep in touch. 💙💚💛

When i have taken probiotics in the past it has gone through too fast to leave anything behind, that is that the capsule is still whole when it exits.

I have been asking to see someone in regards to a fecal transplant as the studies i have seen show great results for both UC and c diff infections.

My dr says he doesnt think i am a suitable candidate but I figure its worth a shot. I have nothing to lose!

Hi Karn...just read re capsule coming out whole.....ur gut must b working over tomDid u try any of the anti diarrhohea capsules to slo a sit. I had to use them fairly often for that purpose. I too tried did the transplant myself from my grand daughters stool and yes it did work for a while but I on reflection feel mine was too far gone to have any mega useful effect. I did it myself...theres plenty of info out there on how to do it. If u want any details re mine u can private mail me . MJ

sorry Karen reading over my reply and realised predictive writing took over.lol.  Should read over time and next one should have read. ....to slow the transit but u poss worked that out. MJ

You can open the capsule (pull it apart) and empty contents into yoghurt or a drink. There are very good brands - billions of bacteria in each capsule. One I use is designed so it can be pulled apart but you could cut open if not. Our microrobes do a lot for us.

Hi Stewart...hav u tried private mailing Karen....u mite b able to get info that way to her without deletion ?MJ

Hi Stewart

Thank you for your advice I agree if I drink tap water it doesn't help I have been drinking filtered water but maybe bottled is the way forward is there a reason it's volvic ?

I have had ulcerative colitis and Crohn's for 11 years now always had it under control and was taking pentasa then when I was 7 months pregnant last dec 2014 I got my flare which to this day has not gone i was on prednislone for 6 months which didn't help just gave me to awful side affects and now my bones and joints hurt so much I'm 34 and feel 74 with caring for my baby it's tough I am lucky to have a great supportive husband and my dad and bro to help but no one can really understand unless u have this disease it's evil!

I am now on mercaptopurine and humira injections both are immunosuppressive drugs which aren't helping since them had the hives rash and my hair is falling out and been on them since April the next stage would be infliximab in hospital which I don't want to do I am tired of being on this hamster wheel and not getting anywhere.. I have tried numerous diets which I agree food definitely plays a big part in our bodies to eat right but where my flare is so bad it just cannot be controlled by food only reason I was asking about surgery it's not something I want to go through however I feel I'm running out of options and I am

Missing precious time with my baby and husband.

I used to be able to run half marathon now I can just about walk for 20 mins just want to feel normal again.

I will try the water and thank u how long have u been in remission ?

Hi Rachelle. 

I am so sorry to hear you are having trouble  

It is interesting that everyone I have spoken to is always worse after pregnancy.

i have not had surgery. My new specialist (who I actually trust) doesnt actually think my symptoms are from my UC despite presenting basically the same. i will be spending a few days in hospital next week to run some tests and hopefully find out what is happening.

while I very much appreciate trying all kinds of things before surgery, if you are suffering really badly you are only going to end up having surgery anyway, so it might be worth doing it now and enjoying the next say 5 years rather than being only slightly better.

whatever your feelings are, a good surgeon will not operate if they do not believe it is in your best interest. 

The surgeon i saw said that his patients have gone from a 40% quality of life to 90-95% quality after surgery. Can you even imagine life being so good?! I burst into tears at the thought! 

If you are in Australia, I highly recommend Professor Soloman at RPA. He is lovely and very knowledgable. 

Please see whoever you need to in order to get answers, dont be afraid to jump up and down, or get second opinion. You and your family deserve better than having you suffering all the time.

pleas keep us posted with how you get on.

 

Hi Karen

Thank you for your reply how are you coping are you any better now or still going 10 times per day?

It's great news to hear you trust your specialist I hope they get to the bottom of your condition good luck!! 😊

Yes I agree no point having surgery if not needed however I feel like I am running out of options still Im like a dog with a bone so I will persist with the docs to help me x

Arh that's good to know but I'm on the other side in the UK thank you though..

I will let u know what the outcome is thanks for your support and to Stewart it's lonesome when you feel like your the only one still this forum has helped me be positive x

Before I started my elemental diet (which is supposed to last 6 weeks) i was going 15 times a day, with the elemental diet I go twice but am losing a massive amout of weight, 25kgs in 6 weeks (from the start of my last hospital admission to date, 3.5 weeks on elemental).

Perhaps this might be an option to at least give your colon a rest. It is a really hard diet to stick too and tastes awful but the relief from pain and less loo visits makes it worth while.

Yes I will give anything a go what can u eat and what can't u eat ?

I spoke with my nutrionist and she put be on like a baby food diet everything blended and lots of cooked fish and boiled chicken I did it and it helped my colon but I was the same losing so much weight but was still going at least 8 times per day and found it so depressing after 3 weeks x

This is very depressing too. But about 3hours in i could feel a difference.

I drink pepteman junior. It is kind of like baby formula. It had all your vitamins and minerals in it and is partly digested so your body a rest. It also makes it easier for your body to get what it needs to heal. It is the product one of the leading childrens hospitals use for kids with UC and crohns. In kids they are getting around 12 months remission. It is less effective as you get older but still good results.

That is good to know Karen I will ask my doc about this how long u been doing it now ?

I am 3.5 weeks in. It is extremely difficult because i am feeling pretty good at the moment which makes me want to eat more.

I get really tied by about 4pm but otherwise have more energy than I djd previously.

That's great but I can imagine the cravings!! Glad fingers crossed for you x