I was diagnosed about 18 months ago after suffering for about 2 years silently. I had a big flare in January and was hospitalised after 3 days of constant bleeding, dr's sort of got things under control and I left hospital 4 days later and have just finished 56 days of prednisone but I really don't feel they'd done much good. I'm still loosing a little blood, feel shattered and am now short of breath.
View 3 RepliesI have been on prednisone for 62 days I am finally off of it today and scared as hell as to what to expect now... I have been reading as much as I can but am still unsure of a lot of things . like will I loose a bunch of weight now ?(the weight that i gained on that dreadful medication) or will it be better once i know my triggers? I have figured out some things that have bothered me and i have been staying away from those things I have no family that i know that is dealing with this feeling really alone.
View 1 RepliesI'm currently undergoing a flare up at the min I'm on 5mg of prednisone and 1g of asacol but it's having no effect.
I'm getting a Lil worries but my Dr seems to put it off. In the morning I'm having bad stomach cramping which feels like it's in my lower back too.
Also I've got a few mouth ulcers and 1 on the side of my tongue. I've also noticed I'm getting a lot of spots on my face and back I'm covered.
Is there any suggestions what to do? I've had blood in the stool for 7 months now and the stomach cramping is unbearable in the morning. I'd just want to get sorted.
All just wondering does anyone else have mild flare ups that are like two or three days you are ok then a few days where you are up and down. And also got to be careful when passing wind. And your tummy is rumbling like hell.
View 1 RepliesI'm 23 and I got diagnosed with ulcerative colitis almost a year ago. Whilst being diagnosed and since my diagnosis my work have been really great and supportive, which is amazing! The problem is I'm having too many sick days due to flare ups, fatigue, etc. They're now talking about possibly cutting down my hours so I'm not tiring myself out by working full time, and hopefully have less time off sick. I really can't afford to cut my hours and also can't choose when I am and when I'm not sick!!
View 2 RepliesI have been on azathioprine for 9 months now for my UC and is well under control now.
I have recently been having episodes of extreme abdo pain (not bowel) that comes on all of a sudden and lasts for a few hours..also these episodes include vomiting and passing blood in my urine (last one looked like there was sand in it).
So I'm thinking this is my body trying to pass kidney stones??
Has anyone had this experience after taking azathioprine?? Maybe I'm not drinking enough to flush the toxins through from the meds?
I started getting the following symptoms 6 weeks ago, explosive diarrhea, blood loss, mucus in poo, constipation, 7-10 bm's a day, bloating, cramps, loss of appetite, severe fatigue.... I left it 4 weeks as thought it was a bug & have a very hectic lifestyle so didn't have chance to give it a great deal of thought but went to the docs & she said she's pretty sure it's ulcerative colitis. She was quite concerned & requested I had an urgent colonoscopy within 1 week but I have to wait 6 weeks for this to happen. My doc wasn't happy but said there is nothing she can do to expedite this. I was at my wits end yesterday so my hubby took me to a & e but again they were reluctant to run any tests as I'm already booked in to have a colonoscopy. They did the standard tests which were all normal. I'm now waiting to call a private hospital to get an appointment so that I can get this procedure done ASAP as my family are so concerned. I can't believe that I've got to pay £2k to get this issue checked out? I thought that losing blood for 6 weeks would be classed as urgent but I guess not?
Sorry if tmi but I noticed veg in my stools this morning & that was from a meal I had last Tuesday?
Does this his sound like ulcerative colitis to anyone or could it possibly be crohn's?
I have UC and have had this for the last three years. At the moment it is quite settled however my anxiety and my social fear is taking over my life. I have a fear of not making it to the loo on time when I am out and am constantly thinking of where the nearest toilet is, and although I don’t require it I work myself up so much that I do. This mostly happens when I am stuck in traffic or if the train just randomly stops for a while- as I then get scared that I need the toilet. This brings me very down as my life has changed as I am always fearful and feel low and depressed at time.
Any help or advice will truly be appreciated please as I am longing to have a normal life with my family and friends without having a fear of needing the toilet.
Many thanks in advance.
I am a Diabetic and have been for over 10 years. Since then I have also been diagnosed with Ulcerative colitis, cervical Osteoarthritis, and recently Diverticulosis. I had a fusion and discectomy on C5/C6 August 2014. Since the operation I have had such a bad flare up and I have trouble controlling it. I am now on steroids and hopefully this will take some control. And now I have been told I have high Potassium levels, not sure why this is, could this be because of infection?
View 3 Replies21 year old female diagnosed with left sided UC after 2 colonoscopies over a 6 month period.
I went from 3 to 4 capsules of Apriso daily, which isn't working, to now having just done my 4th Remicade treatment. I still have diarrhea all the time, and occasionally with blood in the stool. I spoke to the Gastro who has said our next steps might be to increase the Apriso (I have one friend who takes 8 capsules daily!), or to try stopping the Apriso all together and seeing how I do. I have tried to get my stress under control-I am a full time student that travels between two campuses and work about 30 hours a week, and even dumped a boyfriend because he added too much stress to my life, lol. I have found stress makes me flare up quite bad.
Is anyone else on Apriso? How much were you prescribed?
Thanks for anyone's experience and wisdom you can share. My Mom and I are about at our wits end trying to find a balance for my life that lets me heal and still lead a somewhat normal life.
I was just wondering if anyone has found any particular types of exercise that help flare ups? Or help to ease the pain... I read swimming is good but is there anything I could do at home?
View 1 RepliesEvening all I was told I had colitis back in April
Was given mes 1g 4 to be taken daily.
They said I had not mild colitis but couldn't confirm
If it was colitis or crohn's. Anyway I do get blood mucus tummy pain when I go toilet. But no pain
Which I am thankful of. I am have a flare now which I meds are not helping they can't seem to kick it. So I am awaiting steroids.
The thing is my tummy makes some loud rimming noises. Is this normal with colitis. Little bit peed off
That they can't say it's colitis or crohn's.
I have been taking prednisolone since August following a severe UC flare up (my first!!) which landed me in hospital for a week. I was on a slowish taper (starting on 40 mg per day and reducing by 5mg every fortnight). I am due to take my last 5mg tablet tomorrow (I am also on 8×pentasa a day at the moment) and am worried about withdrawal/side effects. Anyone experienced any from gradually stopping the steroids?
View 2 RepliesI have recently started working in a salon and we sell the Aloe Vera range including a gel which is supposedly good for colitis? Has anyone tried it and seen improvement? I am on mesalamine oral tablets and mesalazine enemas - only been diagnosed a few weeks.
View 1 RepliesI have left sided colitis and have been on azathioprine 75mg x 2 daily and two 5mg prednisolone tablets. Have been on the full dosage of azathioprine for four weeks and now suffer from constant constipation to the point where I have to take laxatives and eat prunes. Has anybody else had this problem? Have purchased a tub of benefiber but unsure as to whether I should use it.
View 10 RepliesI've been diagnosed with ulcerative colitis yesterday and was given 30 x 500 mg suppositories but the consultant said I would have my next appointment in 3 months time.I have to use one per night.Do I use them just for 30 days or should I ask my doctor for some more after 30 days ? It's all very new to me.
View 5 RepliesI was first diagnosed with UC in my early 20's, no real problems until I gave up smoking when I found out I was pregnant at 33 years. Major problems throughout pregnancy, but symptoms stopped almost immediately when I started smoking again after the birth. 7 years later I decided I wanted to give up smoking and did so successfully - until the UC returned with a vengeance - my consultant was at his wits end what to do until I came right out and asked him - would my symptoms stop if I start smoking again. He knew I had done some research into the link between smoking and UC and indeed confirmed that although he could not advise me to start smoking again, there was documented evidence to support that smoking in patients with UC can be beneficial.
I AM IN NO WAY ADVOCATING THAT ANYONE START SMOKING
I want to know if anyone has any experience of this as I feel someone should be doing more research into what it is exactly in cigarettes that is helping with UC, as I have previously tried patches, herbal cigs, etc etc and nothing worked. I hate being a smoker but I would rather suffer the consequences of smoking at a later date than suffer the horror that I endured when I was not in remission.
Anyone on here been diagnosed with ibs as well as ulcerative colitis? I have been getting daily abdo pains and doc thinks I have Ibs alongside
uc which hopefully is in remission! Sometimes food relieves pain and sometimes a bm stops the pain but I cannot pin down any reason for the pains. I have been prescribed Mebeverine 135 but so far hasn't stopped pains. Would be pleased to hear from anyone else with IBS and UC and what their symptoms/ treatment are?
I am 25 yrs old and I was diagnosed with UC when I was 16. I am currently on 2000 mg Pentasa twice daily and 75 mg Imuran ( azathioprine) once daily. I haven't had a flare up in over a year. So all is good only now my partner and I would like to try for a baby.
I have discussed this with my consultant and she advised not to come off any medication as a flare up would be worse for the baby than the meds.
The only thing is, I have been looking into the effects of Imuran and it gives awful side effects including miscarriage and fetal deformities.
I am just looking to see if anyone has any info on what I should do. And if any women out there have taken this medication through pregnancy.
Just wondering how long it took people to get any kind of improvement in their colitis symptoms with renicade. I had my first loading dose today and the dr said it would take some time to see any kind of result.
Also did you experience any itching or headaches after? About two hours after i started expiencing itchy eyes and started to get a headache, now 8 hrs after the infusion finished my hands, arms and face are itchy. My eyes are still itchy and my headache is still there.
I had an allergic reaction to 6mp but it was far more intense itching than this.
I have recently been diagnosed with Ulcerative Colitis after a bad flare up that put me into hospital for a a few weeks and then off work for a couple of months. Much better now, but I am knocked out on cyclosporine and will be taking azathioprine for the next few years, which in itself can be unpleasant and has associated risks/lifestyle changes such as avoiding sunshine because of the increased risk of skin cancer.
Does anyone know about this new drug coming forward called Vedolizumab? Apparently it is much easier going on the system and doesn't act a general immunosuppressant but rather targets the specific response that causes Ulcerative Colitis and Crohn's. I can see it'll take time to get accepted into the UK because of the NICE (ironic name) bureaucracy, but what are the stories coming out of the US about this drug?
I am on a LOT of medication and whilst most will taper off in the next couple of months, I could do with a one hit drug for UC and I have been tole Vedolizumab might just be ut.