Suggestions on medication, both prescribed and alternative

Hi Ben

im sorry to hear that you are going through a difficult time with your ulcerative colitis.

I was 57 when diagnosed with the same in August 2013 & my symptons were also exactly the same as yours during what you will come to understand & eventually accept is a 'flare up'( when your condition is active from mild to severe). I say laccept as you will go through a long period initially where you are in denial of your IBD. You have to accept that you will have IBD now BUT it WILL be under control or manageable throughout your life. When my colitis first flared up I didn't go out of the house even past the front door for a long time because as soon as I got there I had to turn around & head back the the loo! It was a real physical condition but obviously just the thought of having an accident while out cause a lot of stress as well.

I don't know what strength your steroids or anti inflammatory drugs are & what level your flare up is. I assume you've had a camera inside & your doctors are in touch with you at the moment.

There are several things you can do. Wear special pads if you have to go out ' just in case' & no one need know. Important-Ring your IBD clinic tomorrow & speak to the nurses or leave a massage for them to get back to you. Or ring your own doctor for an appointment in the next few days. Very helpful-Go onto the website Crohn's colitis UK where there is a helpline & advise. 

Fatigue is awful as well. You may be getting dehydrated & I guess you're losing weight. 

Remember you don't have to struggle on alone. 

 

Hi ben I've just read a few more of the replies to you & thought of some other things to say. When I went on to steroids in September 2013 I was on 10x 5mg oral daily for a few weeks reducing gradually & everytime I got to say 4x 5mg I bled so had to restart the steroids. This happened 3 times over a period of 13 months. Eventually they also introduced Humira in July  to wean me off the steroids. Anyway it sounds to me from what you said about being great on 40 mg that perhaps you have come off them or reduced them too soon.

i wouldn't have high fibre diet. Can you imagine having an excruciatingly  sore throat & eating crisps! Things like tin peaches in syrup ,rice krispnes ,no wheat, white bread a little. No cabbage broccoli etc. fish is good, chicken. Remember you still need a balanced diet especially if you're loosing weight. Once your bowel settled ask the IBD clinic for dietary advice. I don't know where you're posting from & how near or helpful your hospital IBD  clinic is.

if you join Crohns colitis UK £15 adult per year & free I think if under 19. They will send you a welcome pack newsletters & a 'can't wait card' to carry with you & show in various shops etc if you need you use their loo urgently.( I'm not connected to this organisation at all just a member.)

Make sure you have change on you as some loos charge entry, found that out on my first outing & was desperate! Check out where all loos are. I carry a small wash bag in my handbag, I know it's easier for a woman I guess, in it I have spare pants andrex wipes, tissues & disposable gloves. A male friend of mind just carries a loo roll in pocket. I used to think my freedom had been taken away & that I would  never again be able to go for a walk in the countryside. Actually it was a lot easier I went on a 2 hour walk when I had the energy & when I needed the loo I descreetly went!

if you have to go out then wear something pads or incontinence pads. You don't need any one to know & having very nearly gone in my pants the other day at the shops I wished I worn some. I doesn't mean you're incontinent now & it's just peace of mind.

Well hope all this helps.

Hi Ben, I have just recently found out I have UC although have suffered the symptoms on and off for over 15 years, I am going back on Tuesday for another colonoscopy on Tuesday to see how far it's spread (so scared!!) I am a single mother of two one aged 11 and one aged 2years, I really struggle with the fatigue side of things and driving on the school run in the morning is my biggest nightmare and I'm sometimes in tears running through the front door to get to the loo on the way home, I had my first night out a while ago and did actually have a accident, I just couldn't get to the loo in time, hadn't even got to the bar for a drink!!! Lol had to ring a friend to go to my house get me a change of clothes off the baby sitter and bring them to the pub toilets......I was mortified!!! Since finding out about the UC after this accident, I have changed my eating habits and it is making a big difference so far, but there is still lots I need to find out myself. I find being on this site helps so much, just knowing I'm not the only person suffering this way and I'm not alone is very comforting!!

I don't eat fruit, never have but I like veg, but I used to eat it raw mainly, like salad, so I'm trying to stay away from that and have it cooked. Steering clear of processed foods, switched to green tea, not drinking fizzy.avoiding whole grand and fried foods, Trying to work out if it's safe to eat peanut butter??? Other than that probiotic drinks and yogurts and eating little and often 😂 I hope you get to grips with this. I'm wondering what medication they will try me on. Has anyone tried any alternative therapies?? Chin up peeps xx

Hi Ben, I have replied to some others and I have only 1 year of experience of UC but have learned alot. My son was diagnosed at 27 and went straight to severe, he ended up hospitalised as he got so weak from weight loss, going to the loo 15x a day. He had intravenous meds and hydration and feeding. There is one important piece of advice I would tell anyone with a serious disease and that is find a great hospital and Consultant and an experienced team. Anyone can ask for a referral from their GP. We can say very good things about John Radcliffe Hospital Oxford and we Know that St Marks Hospital is very good.

Also vitamins and minerals are also important as you absorb badly on a flare up, esp Vitamin B complex  and potassium.

Good luck to everyone! 

Hi newbie here just wondering 10th day on pentasa supps 1g when they may begin to work to stop/reduce bleeding?  Found out last nite fizzy drink and a bar of chocolate does not agree with proctitis!!!  No idea when ill be sent appt to see cons at hosp or whatother meds they may try so at the mo only on the supps and paracetamol