Currently down to 3 BMs per day from 12+. I am on 40mg pred which will be helping that too. Seeing small improvements daily with urgency and formation. Had my first formed stool today since June....
Hi All, Very early update. I have only been to the loo twice since the fecal transplant! That's twice in say 18 hours! Just now, I did the best looking, best smelling BM I've had since June! It's...
After three recurrent bouts of c-diff which really inflamed my pancolitis, I just today had my first fecal transplant via NG tube! At the moment, I've been weaned off IV hydrocortisone and I am on...
I know - it's really frustrating the way things are being done! They tried me on Fidaxomin after the Vanc and took me off it after 24 hours as I was spiking temperatures which is ridiculous as I am...
I'm battling my third consecutive round of severe c-diff which has made my UC and colon totally inflamed! (Pan-colitis). In Ireland, they don't treat c-diff and UC at same time so the last two times,...
Thank you for the replies. Got the call today to confirm my gut-instinct was right and the c-diff is back after testing negative 10 days ago! Devastated. I'm highly allergic to the Flagyl and the...
Hi All, I've just gotten over a bought of really bad C-Diff. Last test was negative and going to do another stool sample tomorrow just to be sure it's not back. I am now trying to battle a flare-up....
Thanks, bowels started moving again - dodgily but still movement!...
I've just been reduced from 400mg IV hydrocortisone to 100mg to now 40mg oral pred daily. Since yesterday, my CRPs are down to 5 - they had been in the 200s. But I feel so bloated and constipated and...
Ok, so the holiday to Europe went out the window - instead ended up in A&E. In hosp three weeks now. The Flagyl and Vancomycin made me even more ill than the c-diff itself! I was violently vomiting...
I take buscopan for pain for bowel spasms and bloating! It's a life-saver! You need a prescription for it !...
This is the start of Day 4 on Vancomycin 250ml 4 times a day. So far, I can eat a thing and I'm so nauseous and keep reaching as a side-effect. I'm currently on Infliximab every 8 weeks. Last...
Ok, so instead of travelling to Europe on my holidays, I'm in hospital with C-diff. Really really unwell at the moment. The 400mg 3 times daily of Flagyl literally poisoned me so they've moved me...
Thanks for the replies all. Does anyone know why my doctor has taken me off steroids? I'm only on Flagyl for the next two to four weeks depending how it goes. I'm going away on holidays to Europe in...
Hi All, So it turns out the flare-up I've been experiencing the last 6-7 weeks is actual to C-Difficile! Results came back positive today! Annoyed at myself I didn't get tested for it sooner as I had...
You'd think my lowest would have been my first flare-up which was incredibly severe and lasted 3 years.. I finally got into remission by Remicade which lasted three amazing years. I'm currently...
Hi, Currently experiencing a mild, antibiotic-induced flare-up for the first time since 2013. I'm currently on 2.4g Mezavant XL and 8-week infusions of Infliximab. I came off Imuran in January. I'm...
Hi All, Long time no post. I've been happily in remission (totally symptom-free since October 2013). After a very severe three-year flare-up, I began Remicade in Oct 2013 and never looked back!...
Hi All, It's been a while since I've posted on this site! I had extremely severe UC for 3 years before Remicade put me into remission after trying and failing every other alternative from medication...
Hi all, I'm never on here anymore so I thought I'd post a quick update for anyone contemplating Infliximab/Remicade. I am in remission for over one year now from Remicade after trying and failing...
Thanks for the reply. I think I might take 10mg twice daily for the next few days to see if it helps!...
I am currently taking L-glutamine powder (which I find great - particularly for form), slippery elm (2 x 270mg tablets daily) and probiotics (2 capsules). My L-Glutamine powder has 3.5g (3,500mg) per...
Thanks everyone - never thought I'd find relief! Long may it last!...
I've been pretty much absent from Healing Well all year. After 3 horrendous years with this disease and no sign of a break - only whilst on steroids - Remicade/Infliximab has been my saviour. I began...
Thanks contentprof. Going to start back using them for a few more months before tapering just to keep that angry inflammation at bay!...
Just had my 6th infusion - all has been going well so far. I have been off pred 7 months which is insane! I introduced L-glutamine powder to help with form as that was one thing i was having trouble...
I was thinking that too InSoFla. So hard to know! I just bought L-glutamine powder today! Starting on 5g daily!...
Thanks soy stud! I agree! Meat, bone broth and booked carrots for the next two days! Lucky me ha!...
I know what you mean Gary, I wanted to try Paleo after researching as there aren't actually many differences between the two diets - mainly Paleo omits all dairy. But I think I need the healing intro...
Hi Gary, I started SCD last year when I was flaring. Did it for over 5 weeks - within 3 days of starting it, I had gone from 15 BMs a day to 2 healthy looking BMs per day so my body does respond well...
Thanks banana girl! Do you stick to resistant starches? (I don't even know what they are!) I had sweet potato fries with my steak this evening! I'm definitely gonna scale it right back to no fruit or...
Hi all, Starting Paleo this week. I'm on Day 4. I definitely had too much fruit yesterday (something I would usually avoid, other than bananas). I also had two Nak'd bars a day (only ingredients are...
BananaGirl - I literally just got my DEXA results. Bone mineral density all came back clear. I'm so surprised as my bones are aching as I type! Must be just part of the UC. I met a girl in the hosp...
I'm off pred nearly 20 weeks now. Am heading towards my usually slippery flare-slope with symptoms slowly but steadily creeping in. At the moment, I have increased urgency and no real form - very...
I'm convinced the people that voted 'never had it' have either always had larger, overweight faces or else they just can't notice the difference in their face! 🙊...
I know how you feel! I despise moonface! I've been on steroids so much over the last three years - it really gets me down! I don't put on weight anywhere else, but my face puffs out all round and...
Wow, I think I've had even more pred than you :-/ Scary! Will let you know when I get my results! Will probably be Thursday or Friday!...
So sorry to hear that B-girl! Have they given you any suggestions? I had my first DEXA scan two days ago, results not back for a week! :-/ Did you feel like you had weakened bones? How much steroids...
Thanks Judy2, it's been 3 years of UC with symptom-free periods only when I'm on steroids! My face has diablo resumed to normal from all the pred! Did it take you long to see pre-UC BMs?? Hope I...
Just had my fourth Remicade infusion. Am off steroids 14 weeks. (Longest I've lasted off steroids without symptoms is 16 weeks). Still no idea if Remicade is working or not. BMs are 1 a day, the odd...
Sorry to hear you're having such a rough time woof-woof! Can I ask what it is about the j-pouch that is making you feel like this? I hope you can find some help somewhere! It will get better!...
Thanks for all the input! It's crazy how different everyone's experience is with this disease! I'm finished pred 6 weeks ago now. Tried SCD diet again for a week but I just find it impossible!...
I had my third Remicade infusion two days ago. I finished pred 5 weeks ago today. Usually, I begin to go downhill once I come off pred and I generally end up in a major flare after 8-12 weeks off...
Thank you for all your replies! It keeps me hopeful. It seems to be successful for so many people.. I really hope I'm one of them! Will keep you updated :-)...
Starting Remicade in Oct - finally got a date! Steroid-dependant, currently on 30mg Pred (tapering from 45mg). On Imuran (100mg) and stopped Humira as it didn't work for me. On Mezavant XL 4.8g and...
I would go with Remicade. I was on Humira for 8 months and I don't think it even worked for me - possibly helped for three months! I started to develop severe injection-site reactions and had to stop...
Hang in there on the diet! It's a tough one! His cravings will go after 10 days! Go easy on introducing the nut flours etc! I'm starting back on the diet this week once I start to reduce my steroids!...
Thinking of you Bananagirl! You will get through this and come out fighting (and healthier!) on the other side! Best wishes! x...
Pluot and NiceCupOfTea - thank you so much for the advice! Very informative - I really appreciate it! In Ireland, the three surgeries take a minimum of a year here. We're quite slow ha. I'm...
Thanks all. It's comforting to hear that you can all relate! Nicecupoftea, I didn't know the J-pouch failure rate was so low! That makes me feel a bit better about it. When I said 'not normal', I...