Dear fellow sufferers I have been on Humira for 2.5 years with Mercaptopurine. I have started to flare due to the usual things eg. stress. Does anyone know what I could add in to stabilise things,...
Hello from UK My uc was mild to moderate for many years with occasional flare ups; however, during the menopause, it got far worse. I questioned this with my consultant at Guys and he found a study...
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My son (24 yrs old) is severely autistic (with constipation) and has the same Chromosome 5 deletion as me. His uncle is high functioning autistic but my autoimmune problems with UC definitely...
Thank you to all - some lovely offerings about our delightful disease! Happy healing to all ... thanks UCyousee - I'm much better on the humira! Cxxx...
After The Sick Rose (William Blake) O Colon thou art sick The invisible gene, That burns through the gut In the flaming bowel: Has found out thy bed Of crimson pain: And its dark secret anger Does...
Thanks Ipoop An incredible array of new drugs .... gives me hope! Cx...
When it comes to ulcerative colitis, I wouldn't rock the boat! I've just started Humira and it's so easy to administer. Great results so far and my energy levels after one month are suddenly so much...
Hello Ariel 44 Sorry you're going through this. It is a terrible disease and has certainly created challenges for me over the last 40 years. I have been in an acute flare up for months and just...
Hi I have been in a severe/acute flare up, which is now resolving on Humira. My uc diet for what it's worth is: Stewed apples with cinnamon and a dollop of coconut yoghurt for breakfast Salmon,...
Interesting! Iv steroids failed for me when I was in hospital. Remicade worked though and hopefully will work for you ... I'm actually looking forward to my next injections on Thursday! Sad ... Get...
Hi Doingmybest I haven't heard about my CRP level, but I suspect it has been very high. Sorry to hear that Humira hasn't worked for you. I am feeling better just one week after loading dose, but...
Thank you Flowers Gal! Much less bleeding and throbbing pain today. Just taking it day by day ... stay well and strong! Cx...
Thanks Mike in Georgia! Glad it's working well for you ... I can see some calming already ... Yippee!! Cx...
Thanks to everyone for your support. After vomiting badly yesterday, I got to the hospital and had 4 loading injections of Humira. I couldn't get them in fast enough. Stomach marginally calmer this...
Thanks for that crumb of hope Mike! Cannot wait til I feel better .... Hope you stay well! Catherine...
Oh thanks UCyousee. I shall try that. I take a bit of chicken broth to help with my salts, but maybe something more targeted would help before I start the biologics. I'm at the stage of thinking...
I had two shots of Astra Zeneca and felt the effects after the second dose. Much happier to have the vaccine. I watched a great video with some of the experts in UC in this country (GB), who all...
Hello and thanks to you all. This is all very helpful! I am struggling a lot with dehydration in spite of drinking tons of water and green tea. I have a bad headache when on the toilet passing the...
Hello Ucers In a horrible flare again with terrible cramping that makes me vomit in the mornings - so bowl is permanently placed by my loo. Lots of bleeding, mucus, exhaustion and the usual panoply...
Hello fellow sufferers Methinks the consultant is talking out of the hole we all use too much! I have spoken to a private consultant, who says there shouldn't be any problem in getting Remicade....
Hi all consultant is equivalent to GI in the states. He is so unpleasant that I consider his personality a disability! The nurses at the hospital when I had my sigmoidoscopy a few weeks ago made a...
Just had another discussion with my consultant (very, very unpleasant man!) who has refused biologics, offered steroids (didn't work last time) and kept talking about fibrosis causing the issues - I...
Thanks so much for the response! I'm really grateful... speaking to the GI tomorrow and they might sanction remicade at the multi disciplinary meeting. I really need something else to give it a boost...
Hi everyone I've been on Mercaptopurine for 10 weeks. Last week's sigmoidoscopy showed acute flare up. I am actually feeling worse now than when I started on this drug. I have had a few false dawns...
I have had extraordinary results with cannibis oil. My friend grows it and makes the oil himself with full content of CBD/THC to help with his cancer. As soon as I took it, my bowel was calm and...
Good to hear - we need it licensed as a proper medication now in the UK! Miraculous for me alongside Balasalazide. Cheers Kevin...
Just to say to all UCers - I have recently tried proper cannabis oil made by a friend treating his cancer. It worked immediately and I am much better than on immune suppressants!...
Hello! I've just started taking cannabis oil made up by a friend and without wanting to sound too excited, my gut feels calmer already! I'm taking in the evening before bed and don't notice too many...
Hi Happier I had a long spell of dizziness on Aza. I have been on 150mg since last February. The colitis is very well controlled - amazing after so many years of struggle but the side effects are...
Thanks to all for response! I have never felt quite so fatigued and suspect that the imuran is partly to blame. It is a clear difference compared to my usual response to a flare up. The disease no...
Hello fellow sufferers I have been on azathiorpine for 7 months and my colon feels better than it has felt in about the last 7 years! This is what real remission feels like. However, the only thing...
Hi Jessa I'm also based in the uk. I had a serious flare at xmas but my employer has been really understanding. My uc is classed as a disability - it might be worth checking this out and letting your...
Hiya Thanks for the responses! I have a hospital review coming up so will try and find out what is going on. The colon is happier than it's been in years, which is something at least! I really need...
Hi Can anyone help? I have been on imuran/aza 150mg for 6 months and my colon is very happy - down to 1 to 3 bms per day. I have suffered hair loss and fatigue, but recently my usual aches,...
The more you practise mindfulness, the easier it is to switch the stress off. It helps you to control your breathing and slows everything down including the bowel. I have found it invaluable when I...
Anxiety and stress are major triggers made worse of course by having ulcerative colitis. I have to take a train journey to London twice a week and use mindfulness as a way of slowing my breathing and...
Let's just hope that blond ambition doesn't succeed in the US. Those in the UK will have to live with yet another old Etonian! Sad day for Britain. :confused:...
Hi all I have been on imuran for around 5 months and have lost around two thirds of my hair now. I had a week when it seemed to slow down and have been taking priorin and using priorin shampoo and...
Yep! I got steroid-induced diabetes - took them so much that even iv steroids in hospital didn't work! No history of diabetes in my family but kept putting on weight with steroids and then losing it...
I have just realised that I am much more tired than usual! I've been on azathioprine for 3 months plus now and doing really well on the uc front, but I get home and crash. It's almost like blacking...
Hi all. Quincy - I was genetically tested along with my son and his father. Apparently, some autism is associated with an issue on Chromosome 5, but stumbled across the diseases associated with...
Hi all I just found out today that I have a mutation/deletion with chromosome 5, found during testing for my son who is severely autistic and who also has a deletion on chromosome 5. Under the list...
Thanks Dikid and Ipoop. They are running more blood work and I have an appointment with the IBD nurse soon. I definitely don't want to come off the Imuran feeling so well after so many years of...
I posted a few weeks ago that I was losing lots of hair. I have lost about half an head with no signs of it stopping. My colon is in much better nick but impending baldness seems a hard trade-off....
Hi. I've been a lecturer and teacher for many years. I've generally found that performance anxiety makes me go a great deal beforehand. I've used immodium after going to the toilet a lot, which tends...
Hi Quincy I'm seeing my hairdresser today so hopefully she can take a close look. Hope it's not the azathioprine! I'm sure I have had hair loss before when withdrawing from steroids, though not as...
Thanks very much for all the advice. I have low calcium and probably low Vitamin D at the moment after the high steroid use. I'm now properly steroid resistant. Off for a colonoscopy on Friday...
Hello Taben I have just got through a terrible taper from iv steroids and high doses for a long time! It is hell and I am now struggling with hair loss on top of all the other side effects. All I can...
I started azathioprine two and half months ago. I'm responding well but my doctor said it can take up to 6 months. I would not reduce the steroids anymore. Have you tried biologics. I had 3 infusions...