I've had uc from the age of 16, i'm now 52. my life consisted of meds, pain and lots of hospital stays until 3 years ago when i had my stoma fitted. since then i've been able to get on with my life pain and meds free so imagine my shock at my last checkup to be told i need another op....
View 7 RepliesI had total colectomy and ileostomy five weeks ago and even though I do have some help from my ostomy nurse, I’m now left alone to take care of my stoma bag and I immediately ran into one simple question – how often should I change the wafer? I’ve been changing the bag every three days and when I changed it last time I noticed skin underneath the wafer is reddish, so I’m wondering if I’m changing the wafer too rarely, or am I doing something else wrong? I do first put the protective powder, then the wafer then the pouch, but like I said, the skin underneath the wafer is red and maybe I’m supposed to change it more often?
View 1 RepliesMy mom had emergency surgery that almost cost her her life. She had her bowels rupture into her stomach and she almost died. She went septic and it was really bad and scary. She has a colostomy and it will be reversed in six months. Her surgeon said to see a special doctor that specializes in reversals. She is 71 years old and they said she will make the decision to reverse or just end up keeping it. I know it is major surgery again and your age is a risk factor and your health etc. They also said if she were to decide to reverse it, she would need a colonoscopy done first. It scares me, because we almost lost her once. She is doing well with the colostomy and I actually helped her with it and we did well our first time on our own. I was proud.
The one thing she does do all the time is pull her pants down to check it all the time. Is this something that is normal in the beginning? I will be standing in the room and she has her pants down checking it.
I am a US citizen living in Costa Rica the last 10 years. I had my second child on Nov. 28th at age 40. It was a difficult birth and the wall between my anus and vagina was torn 10 cm. They had to do emergency surgery to repair the wall and also did a colostomy in order to prevent infections to the repaired wall.
The stoma education provided in a third world country is lacking in every way possible. If it wasn't for the internet I wouldn't have survived the first difficult weeks. Eventually I was able to live a pretty normal life, even with a colostomy bag.
It is six months later, and I am scheduled for my colostomy reversal in two days. I have started a clear liquid diet. What can I expect? Is it a painful recovery? How soon will I have a bowel movement?
I have a 38 year old developmentally handicapped son who had emergency abdominal surgery due to Fournier's Gangrene last August which resulted in a temporary transverse colostomy in order to give his rectal area a change to heal. There was infection around his sphincter muscles and that is why the colostomy was done. We are now contemplating have this reversed. The surgeon says that his sphincter muscles are working but not as good as they should and she is afraid she may render him incontinent if she reverses it and he will be unhappy but he cannot be more unhappy than he is right now.His transverse is in a terrible place and we encounter a lot of flange changes as it doesn't stick even with paste, etc. and is bowel is prolapsed which is very upsetting to him. Another option is to move it down lower in his abdomen but we are considering having it reversed and seeing if he can control his muscles. We are believing that we have to try. Are there others out there with the same issue of weak sphincter muscles who have opted for a reversal?.
View 6 RepliesI 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.
I 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 RepliesAnother thing to ask as I am trying to find out who has what with UC and who doesn't as it helps to talk to others.
Anyone had any problems with horrible feeling sick before eating or after eating? Or and this is the even sillier part feeling hungry and sick at the same time?
It is a vicious circle eat, feel sick, can't eat, still feel sick. It lasts around 2 hours or sometimes half the day and it is one of the many symptoms this annoying thing does.