Is This Medicine Making Me Worse

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Ima 24year old female and I was diagnosed with uc in january after being admitted into hospital christmas day in excruciating pain. I was put on asacol 2400mg which made everything a million times worse so I stopped taking it. I didnt receive any treatment for a month and now im going through a flare up. From what I have read its a mild flare up..going toilet 8times a day with blood mucus bloating wind, the usual suspects.

ive been commenced on pentassa 2mg a day which is making me bloated and gassy. It also seems to be acting like a laxative. Im not sure if I should persevere or stop taking it now, it hasnt even been a week yet. HELP!!! is this normal?

I really have no patience or fight left in me for this condition. Im the only person in my family with it so they dont understand how awful it makes you feel. Ive stopped eating carbs at its not worth the pain but im not sure if it actually was making a difference because im now having a flare up.

Im also scared for my job, im a paediatric nurse and they're not very fond of me being off sick so frequently. I feel like I have no control over my life its constantly dictated by uc.

I really would appreciate any advice, tips or tricks to get some normality back in my life

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10 Replies

  • Posted

    hello what works for one may not work for another everybody has there way to control it its a case of finding out what works for you it took me 2 years to get it under control, all I can do is tell you how I control mine and maybe some of it may help you first I avoid alcohol, caffeine, dairy, high fibre foods ie nuts beans ect I control mine by eating small low fibre meals washed down by a complan shake made with water im also on x2 mezaline oral iv gone from 28 toilet trips to 4 aday by doing this
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  • Posted

    It is possible they can make it worse, not common but it can happen. Steroids are normally the best to get control, I hate them but they do work, maybe a high dose short blast may help.

    Go back to your GP don't be scared to say this isn't working for me, there are so many more meds out there, ask if you can be referred to a dietician to talk about your diet, it can take a while to get under control.

    Ask your GP or consultant to write a letter explaining your condition to your boss, I also had hassle at work and the stress of that can exacerbate the condition.

    I have suffered for over 20 years, and you will get control of your life again, but the first year after diagnosis is the worst, but you will learn what makes you worse and get your life back. Milk can be bad for flaring, again Im no dietician but you need carbs but maybe you are eating the wrong type

    Don't lose hope, you will get there, it's very early days for you.

    After 15 years of suffering on and off, I got bowel cancer, I'm 6 years passed that now and still have colitis in the tiny part of bowel I have left, but I still work full time, go on holidays etc etc so you will learn to live with it without it having total control over you, but don't stop communicating with your medical team, you may get meds that work for years then no longer do, so always go and speak to them if you are having problems.

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  • Posted

    I had the first uc attack of my life around the same age forty-five years ago. I was hospitalized for three weeks and then returned to work feeling quite fine. I don't remember what medication I was given, but probably steroids. I felt much better almost immediately. I read up on the disease and found that it could be caused or exacerbated by stress.

    I read a book on relaxation techniques and followed its suggestions on a daily basis. I'd lie down, close my eyes and over a fifteen minute period go through a kind of mantra of "relax your feet, relax your thighs" etc all the way up to the top of my head. But slowly, with eyes closed and trying consciencously relaxing my whole body. During the day I'd be conscious of trying to relax especially my stomach muscles to check on myself.

    I also resolved to reduce the stresses in my life as much as possible ( ailing mother, very young brother). Perhaps miraculously, I didn't have any serious flareups for decades. I'd occasinally gets bouts of diarrhea, probably over-treated by prednisone, but I never missed work after that. Married, have two grown children and just retired after forty-five years. UC did not affect my life very much if at all.

    True, fifteen years ago I was diagnosed with PSC (something related to UC - both autoimmune diseases) six months after first retiring and had a liver transplant. After a year, I returned to a new career, teaching in my field at a community college. And now after twelve years have probably finally retired for good.

    What I want to get across is that you can have a normal life with uc, although perhaps not eveyrone does.

    Try to reduce any stresses in your life. Put yourself first, at least for now. Definitely go back to a specialist and don't give up. Try to take charge of your condition. Find a doctor you can talk to who listens and have a positive attitude (if possible). This may be the worst it ever gets. Good luck

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  • Posted

    I have suffered from uc for 25 years with periodic flare ups over this time and I felt I had to share my latest re it in case this is remotely beneficial to any other sufferer. Am just recovering from most recent flare. I lost about 1 and half stones in 6 week period. I commenced steroids taking asacol [ had been recently changed to Pentasa but that has got to be worst mistake I ever made. I was crippled with wind for about 5 days which obviously exacerbated uc even more. Realised Pentasa was a problem and stopped it. Within 24 hours the awful wind pains resolved. I am at present on steroids . Asacol, bovine cholesterol, serrapeptase , bone broth [have been taking it for about a month ] various vitamins. However I believe what has been most beneficial for me this time has been the introduction of 1 teaspoon of lepicol or similiar - I am using the one with probiotics in it - 1 teaspoon of psyllium seed [ it has an influential effect surrounding release and utilisation of butyric acid which is beneficial for uc ] and it has got to be the seed. The only place I could source in the uk was online ' Just Ingredients' , 1 teaspoon of hemp seed. I also put couple of tablespoons of kefir in it for probiotics. I take it twice a day. I make up the concoction night before and let it sit overnight to let it gel, have it about half hour before breakfast and then add kefir just before I drink it. Just make sure to stir it all very well. I then make my second glass and have it before dinner in evening. I must say my recovery from uc has never been so rapid. I have had no trouble from foul smelling wind which would have been a major problem . I hope this info is of some use to some fellow sufferers cos I have lost so many years of my

    Iife to uc.

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    • Posted

      Hi just come across your post about the hemp seeds etc is this still working for you and can I add the seeds u suggested in a probiotic drink or yoghurt?? And i read kefir is high in fibre and I thought with this disease high fibre is a big no no any other suggestions you have would be great on suffering so bad only steroids help all other tablets and suppositories make me feel like I have morning sickness all day haven't eating anything but half a bowl of soup in days and even drinking water makes me want to hurl
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  • Posted

    Hi, sorry to hear you've been having a rough time of it. I can't be much help but just wanted to reply because I am also a paediatric nurse! Fortunately I have a great boss who's very understanding but then again aside from being off for 3 weeks when I was diagnosed 2 years ago (although had to be off on my Xmas day shift- usually a big no no lol) I haven't taken any time off since.

    It does sound like you need steroids, I'm currently flaring and using pred suppositories and pred foam. This is in addition to taking 4g pentasa orally. Do you know how much of your colon is involved?

    X

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  • Posted

    Thank you all for your replies its comforting to know someone understands how I feel. After a good cry I took myself to hospital and have been on steroids which seem to be helping. Im trying to be optimistic about my condition and I think educating myself will be the first step.

    thank you all again, you've given me hope.

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  • Posted

    I too have been diagnosed with PSC and autoimmune hepatitis and I have sjorgrens syndrome and thyroid disease, as well as the UC, and I'm told I will need a liver transplant in my future. If there are UC sufferers who seem to be having other problems, be worth asking about immune system disorders. Like gabe99 I have had and still have really awful times but they pass and I then can carry on as normal. Try to put yourself first when you feel bad and concentrate on healing.
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  • Posted

    Steph, the thing to watch out for with PSC is a rise in blood pressure from blocked liver arteries (veins?) which can cause further life-threatening complications. The most serious is leeking of blood vessels in the esophagus which can result in death due to blood loss if not recognized and treated. I was warned about it and one day found my pulse racing, a flushed feeling with no fever and dark stools (from blood in the stomach/intestines). Went to the hospital immediately and had to have the vessels cauterized. Not a pleasant procedure. That's when I was put on the transplant list. Hemorrhoids may also develop due to the increase in blood pressure.

    Stay aware of these possible complications and go to emergency immediately.

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  • Posted

    Has anyone heard of this form of treatment?

    Whipworm Therapy

    An interesting observation is that infection with the pig whipworm may be effective treatment for ulcerative colitis. Scientists believe that the worms that inhabit the colon alter the immune response and thereby reduce the inflammation. In one study, 43% of patients with ulcerative colitis improved after ingesting pig whipworm eggs for 12 weeks. The impetus for investigating treatment with the whipworm came from the observation that ulcerative colitis was not common in developing countries where intestinal parasitic diseases are common.

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