Hey Shelby, Sorry to hear what you are going through. I had horrific joint pain coming off the prednisone (steroids) and that is common I gather. I had the surgery - I was absolutely terrified - but...
I replied this in the UC forum too - just in case you dont see it! I really struggled with the loop ileostomy. I also had the bleeding raw skin - a real nightmare. What I found to work was a...
I was in a flare on a high dose of prednisone and did just fine :)...
I really struggled with the loop ileostomy. I also had the bleeding raw skin - a real nightmare. What I found to work was a convexity type (cone shaped inward towards the stoma) plate 2 piece system...
I was super freaked out too! Take a big breath and look forward to a life not controlled by UC! A low fiber (like no celery, corn, salad, etc) is recommended with the ostomy for most it seems to...
Good riddance! I would run away from a doc who said pred for life unless you get a group of docs, including an endocrinologist, saying that it is the ONLY option....
I have had mild rectal bleeding my whole life and was diagnosed with proctitis as a teenager. Age 30, after quitting smoking, I started a 3.5 year flare that resulted in...
re side effects immunosuppressants (Imuran, 6MP, Azathioprine): -While the side effects compared to prednisone might not be as outwardly obvious - these are still very serious possible complications...
Hi, I had a cortisol test after going off pred and my cortisol level was rediculously low - no wonder I felt awful! They gave me a small dose of hydrocortisone which I was meant to stay on - but did...
Congrats Anthony - fantastic news and fantastic friends :)...
I am newbie - almost 2 months since my takedown and I would do it again in a heartbeat! Make sure you get a really good surgeon :) You are not cheating - I cheated myself out of years being happy and...
Hey Pam, Really sorry to hear about this - you think you get the surgery and that's it then a new disagnosis! How frustrating!!! I hope that at the very least you will now get good treatment that is...
Hi Christine, I never had a colonoscopy by the surgeon. 5 months before step 1 I had one by my GI and she sent it to my surgeon....
Christine, I am pleased that the Ativan helped you. To get to surgery I needed I high dose of prednisone - to deal with the prednisone I needed valium :( Without it I could not sleep or relax and my...
WHen this happened to me after going off prednisone (I had a terribly low morning corstisol level) a GP put me on low dose hydrocortisone for a period and then it seemed to perk up eventually. Its a...
Pam - Yes you definately need better help. At the very least someone who will precribe codeine or tincture of opium. I cannot beleive that they wont given all the evidence that it helps. When you...
Thanks the Capcoddah - I am still happy so its great to hear that I will get even better :):) I am pleased that it was gone so well for you :) Pam - I hate sports drinks too and cant have food...
SueBear - I used to live very near the John Muir Way in East Lothian. Its beautiful there! I hope you get good weather!...
I am 34 - have 2 kids - and love camping, going out to our little hut in the woods where we go to have fun and have just got into cycling. Last summer, with UC, I had constant accidents, could not...
Meant to say - the doc said it was 'skipped ovulation' - where the body is so distressed it does not ovulate (self-protection) but it can, apparently, be easily fixed with hormones. Good luck!...
I did not get my period after my colectomy for over 2 months, then had a period for over a month until my takedown! Now it has finally settled. My doctor told me that I should have done something -...
For me it was bleeding constantly for 3.5 years - getting brutally anemic, trying every single diet and drug (where I was willing to take the risk) plus the dependency on prednisone. Also - very...
Before my surgery - all I could tolerate was: -home made chicken soup (completely home made - so artificial stocks, etc) -chicken -mashed potatoes. No chemicals AT ALL. No food colouring, no...
Congrats!!!! I hope things go well for you and you feel amazing soon!...
Hi Christine, Yes - denial. Before my surgery I also wondered if it was Lymes - my fillings - etc etc etc. I tried everything I could think of. At the end of the day, you just have to decide and...
I had negative test too but still throw up almost every time I eat bread style products - so I haven't eaten bread/yeast/wheat for over 10 years and if I do I always regret it! Good luck to you!...
CONGRATS :):):) I had my takedown 1 month ago - a few blips but I have still never been happier or felt healthier! I am so pleased that you too are thrilled! Friends cannot beleive how healthy I...
I hope you are as happy as I have been with the result! I am glad you dont have to wait too long. Good luck :)...
I agree with the capecoddah. Re food - my point is - if you are intolerant to x,y,z before surgery - you will likely be after too (at least I am). I cannot eat gluten, wheat, yeast, (it makes me...
Well, I am no athlete and have had alot of injuries (broken spine, legs, etc, 22 operations now all together). I am now 4 weeks post takedown - and this week I have cycled every single day between...
If diet can control your UC - then do not get the surgery. That would be silly. If you have that kind of UC - why would you get surgery? I tried all the diets - and even after surgery still need to...
Hey Scott - I lived in Scotland for 11 years - and I cannot remember them having gatorade or similar there. Go to the chemist and ask them for an electrolyte mix - they should have this. It is very...
I have every day: -gastrolyte or pedialyte (a no sugar electrolyte mix) And the following in pill format: -Calcium/Magnesium/Vit D -Potassium -Vit C -Multivitamin And it works a treat. Good luck!...
Also - have they thought about pouchitis?...
Pam, I am on gluten free too. Try making your own gluten free/yeast free rice pancakes and yeast free rice bread - you can buy the mixes from the health food shop. Rice cakes are good - potatoes (I...
Congrats Christine - I hope you are as happy with the outcome of the surgery as I have been :)...
I was never on it (I was not able to take Remicade due to poss. complications with existing neurological probs - however if I had needed it my GI was confident that there were options for getting it...
I live in Alberta, Canada and moved home after living away in the UK for many years. When I moved back, I got a GP who right away sent me to a good GI. After a couple of years of trying everything...
Have to agree with Summerstorm. There can be complications with any surgery. There are also complications with uncontrolled UC. The drugs can cause complications. Do your pros and cons list. Many...
Hey pam Sorry to hear that you are having so much trouble still. Glad to hear that the Gluten free is helping. I have been on gluten free for over 14 years - when I eat bread and yeast I throw up -...
Christine - I would do it ALL again in a second!!! It is SO worth it! I am starting to feel better than I have in YEARS! Good luck, take big breaths and stay hard core!...
Yes - dehydration was an issue here too - I drank 1liter of pedialyte/day, plus 7/8 glasses of water and juice. Now after takedown its not as bad - but i still need to drink electrolytes every day...
The UC alone made me so anemic and exhausted I could not work anymore or do anything really. I would check the meds however - they can cause issues. Good luck!...
Longest flare 3.5 bloody years then had it taken out!! Now in colon free heaven!...
I had patches and they mentioned skips on the colonoscopy before they took out my colon - but after they removed it the pathology report again stated UC. I was confused when they told me about the...
Yes - infact they had to up it to 40mg a few weeks before just to get to the surgery. Even if you get off it having surgery within 6 -12 months after being on it would require them to put you on it...
Hi Teresa - Just wanted to say good luck! We were unsuccessful in getting pregnant after a year - all the tests said that we were fine - but due to my spinal cord injury we did not want to push it...
Well - normally it is a 2 stage proceedure although some have had it in 1 and others in 3 stages. They remove your entire colon and rectum (apart from a couple of cms). They then build a JPouch from...
I hope you get more time to decide on surgery - but as Sue said some peoples case is so serious that that is the best option. I got my surgery after a 3.5 year flare - after becoming unable to work -...