Ulcerative Colitis

[Return of the Rev]

I have suffered from Colits for 4 years now, I try and get on with my life a deal with what it throws at me.
I've been suffering with a bad cold for a couple of weeks and it makes me think maybe it affects me more than I let on.

Just wanted to see if there were any other sufferers on here, I'm yet to meet someone else with it and I think it would be good to chat with other people about it and how it affects likewise I'm sure I can offer advice too!

I'm lucky that its kept under control with medication but a flair up can wipe me out of energy! trying aloe vera juice at the moment! tastes orrible!

 

[Johnny Crumplin Football]

Seeing this thread has freaked me out a bit as I am just going through a flare up, the worst one I have had for while, which has again coincided with me quitting smoking. I have only had one or two minor flare ups since originally being diagnosed with it in 2000. It is much more common than most people think and is not something I would wish on my worst enemy. From the research I have done on the net recently it seems to be triggered in a lot of people when they stop smoking. There is absolutely no way I am going back to that disgusting habit and I am determined just to roll with the punches. Think I am going to have to have a dry run as well as the beers don't help. On Pentasa at the mo and it doesn't seem to be very effective......

 

[perseus]

Probably not relevant but maybe worth checking out. I had the same symptoms (not diagnosed) for most of my childhood. I was intolerant of whey (found in milk and eggs). Just started smoking and stopped drinking milk.

 

[airman]

I've every sympathy for you all. My wife has had Crohn's for some 20 years now and she's been through the ringer with all manner of drugs and the inevitable re-sections. Nearly came a cropper once when her GP wouldn't listen to her (She knew she was blocked, but he thought he knew better), but we insisted on seeing another GP who correctly diagnosed what was happening and we got her in for surgery just in time as the delay had resulted in the gut perforating at the blockage. Poor girl got a nasty infection after the last surgery. Touch wood, it's under some sort of control at the moment, but still grumbles away and she has good days and bad days. When she's poorly she gets very anaemic and loses all energy, plus the pain and the number two trouble. It really has been a nightmare for her, and talking selfishly for a moment - I find it very frustrating to deal with as I want to help but there's nothing I can do.

One word for the NACC - National Association for Colitis and Crohn's. Mrs Airman has been a member for some years now, they provide some good support and info on drug trials, new treatments etc. The newsletter gives her some good ammunition to go to the specialist with ... "Lets try THIS drug - it's available now and having read up on it I think it might be suitable". Which is all good and gives her some 'control' over what she's going through.

Nasty business, I just hope they make a breakthrough with it before too long.

 

[Johnny Crumplin Football]

Can anybody on here tell me roughly know how long the relapses usually last (I know it probably varies depending on the individual)?

 

[Since1982]

I had sudden onset UC in January 2010. I went from being apparently healthy to at deaths door in the space of three weeks - lets be clear, this is not about a food intolerance or stress - its a complete tosser of a disease. I had no choice but to have my colon removed in an emergency op and then had two ileos for a period of 9 months whilst I recovered from the op. Wearing two bags to deal with body waste is not something I'd recommend normally but given the circumstances it was OK. There are thousands who live with this situation. I was able to go abroad on holiday, work and watch the Albion - life doesn't end with an ileo. In November of 2010 I had the first stage of reconstructive surgery with the formation of an ileo-anal pouch and just about a year ago this was connected up in a third operation. I don't have UC anymore because my colon is gone. I now have a bowel movement a minimum of three times a day, sometimes more but this is perfectly manageable and doesn't stop me working, travelling (I am currently in Egypt on holiday), I can pretty much eat and drink want I want. It has never stopped me getting to the Amex. I now go to the loo when I want to, not when my UC tells me I have to.

My outcome is very good, for others the surgery is still a success but they maybe suffer a few more side effects. If the OP wants to PM me I will happily share more info (some of the detail is probably not for public discussion!) and as this thread shows, there are a number of folks around with direct experience of this illness - its just something that tends not to get spoken about too often. I would also recommend the IA Support Group IA - The Ileostomy Internal Pouch Support Group who are a fantastic help and run an excellent online forum for help and advice - if anybody joins you'll see a poster call Super Seagulls, guess who!

 

[Since1982]

Seeing this thread has freaked me out a bit as I am just going through a flare up, the worst one I have had for while, which has again coincided with me quitting smoking. I have only had one or two minor flare ups since originally being diagnosed with it in 2000. It is much more common than most people think and is not something I would wish on my worst enemy. From the research I have done on the net recently it seems to be triggered in a lot of people when they stop smoking.

I understand that it is now widely accepted that smoking can suppress the symptoms of UC. Two consultants have told me this - but better I think to deal with UC than lung cancer.

 

[clompen]

I've suffered from UC for about 10 years now and after 3 years of remission i had a bad flare up last year. After spending a few weeks in hospital being pumped full of prednisone and remicade, the hospital decided to put me forward for an ileostomy. I decided to get a 2nd opinion before moving forward with surgery and was sent to an academic hospital. They've put me forward for a trial of a new medication called anrukinzumab which i should start next week. Feel free to PM me if you want any further info on my experiences of UC or if you want more information on how things are going with the trial...

 

[NMH]

Bollocks.....................thought we had a new signing.

 

[Curious Orange]

Occasionally (twice a month ish) I awake with a bloated stomach and constant abdominal pain. It is difficult to pin point the pain but it is tender from stomach down to testy's. It feels as if I need to pass something but never do. The pain starts mild and builds to be quite painful and then eventually fades away, it can last for hours. The Doctor could not diagnose anything and so I put it down to good old constipation but I'm not convinced.

Anyone else?

Could be diverticular disease, they'd need to stick a camera up your bum to be sure though. It isn't treatable, so you'd always have a certain amount of discomfort, but the symptoms can be controlled with a high fibre diet.

Diverticular disease is quite common among the older generation, so you can imagine how irritated I was to be diagnosed in my mid thirties!

:[

 

[Jim Van Winkle]

I'm lucky that its kept under control with medication but a flair up can wipe me out of energy! trying aloe vera juice at the moment! tastes orrible!

Have you ever tried goats milk works really well for me? When i was first diagnosed their was a strong link to Crohn's and Ulcerative Colitis in the enzymes in cows milk.

 

[Jim Van Winkle]

Can anybody on here tell me roughly know how long the relapses usually last (I know it probably varies depending on the individual)?

How long is a piece of string? You've answered your own question.

I've been taking Pentasa now for 14 years has worked really well for me. That good in fact that when i get the odd flare up don't either bother seeing the Dr just self medicate the dosage. I mean i've seen enough Dr's now to know what each one is gunna say "you're doing well start reducing the dosage", " time for your annual colonoscopy", "when did you have your last set of bloods", "would you like to take part in a trial for a new drug?".

As a i mentioned in a previous post i've tried goats milk which has helped. Also have you tried plain natural goats yogurt it contains good bacteria for your gut, don't use the flavoured variety as the sugar from the fruit harms the friendly bacteria.

Would also recommend giving Lepicol psyllium husk a try (website below).

Home - Lepicol

 

[SK1NT]

My Step mum had it badly and was on loads of steroids but it is much better now for her...

 

[Return of the Rev]

Have you ever tried goats milk works really well for me? When i was first diagnosed their was a strong link to Crohn's and Ulcerative Colitis in the enzymes in cows milk.

Not tried goats milk,very lucky at the moment with regular medication its just every now and then i feel wiped out,don't really drink much, wine is a big no no and curries best avoided,might try avoiding milk and see how i get on. thanks

 

[User removed 4]

I suffer from Crohn's Disease. Thankfully it's pretty well controlled these days. I think it probably does tire me out quite a lot.

So does my mum, she got crohns in the sixties , apparently it was sparked off by me being born, the local gp just kept telling her she needed to "buck up" when she went down to 6 stone and crohns was finally diagnosed he couldnt do enough for her.

 

[ridda]

Suffer from IBS have done since my teens, am now using manuka honey 22+ seems to help and also Buscopan for when it becomes inflamed,
Hardly ever drink now either, and avoid spicy foods and milk.

 

[Jambo Seagull]

I've suffered from Crohn's disease from the age of 11 am now 30. Had a ileostomy and a reversal at the age of 17. Before the surgery i had my worst flare up was pumped full of steriods and my body didn't respond. My weight ended up dropping to 7 1/2 stone before my bowel exploded and then they operated. Even had the priest round to give me my last rites. My quality of life (knock on wood) has been better since the surgery. Have been on constant medication since with the odd flare up. But never as bad as the one before the surgery. The only down side is using the bathroom 3-4 times a day and losing my hair through the side effects of the medication. But i can take that for a relatively normal life.

My younger brother who is 24 was diagnosed with Crohn's as well last year and had to have a bag fitted straight away. He has really struggled emotionally to come to terms with the illness. It's been a big adjustment in his life from someone who was constantly out boozing and partying to totally changing his lifestyle from not drinking, not smoking and changing his diet.

I've just caught up with this thread and on reading some of the posts, the above in particular, I need to be thankful that nothing like this has happened to me. I got diagnosed almost 29 years ago not long after my 17th birthday. Bizarrely I first started having symptoms on the day of the trip to Anfield for the cup game in '83! I had to go in to the Sick Kids just up from David Rose Sports at Seven Dials to have a massive carbuncle removed from my rectum. The consultant thought I was suffering from cancer (although I only found out about that later!) and it wasnt until I went in to the Royal Sussex to have an impacted wisdom tooth which was showing up on dental x-rays but wasnt giving me any gyp that the oral surgeon sussed that I was suffering from Crohn's Disease. I was then started on Prednisolone and Salazopyrine as well as loperamide.

I've had a few flare-ups over the years, the worst one resulting in me being kept in hospital over a weekend but really I've been very lucky by the sounds of things. I now take Azathioprine and Pentasa as well as Loperamide to cope with the inevitable shits. I've been on Azathioprine for about 5 years and it really is a wonder drug. I suffer from eczema as well as CD and this has really cleared up my eczema. Unfortunately I'm going to have to give it up soon as you can't be on it long term as there are some indicators towards cancer etc.

I live a very normal life. I drink (to excess at times) and eat curries and all manner of food. I know if I go on a bender I will feel like shit(ting) the next day and that I will be spending a lot of time on the bog but all in all, I can't complain.

 

[ben andrews' girlfriend]

Currently going through investigations for UC amongst other things. My large bowel is fine but I'm vitamin b12 deficient so they want to see whether I have the disease in my small bowel. Not huge fun to say the least!

 

[Shropshire Seagull]

Anyone under [was] Mr Farrands?
He's just [or about to] retire.
He did my wife's first op out of the Hove Nuffield and her pouch reversal at Sussex County - seriosuly nice bloke.

 

[Since1982]

Anyone under [was] Mr Farrands?
He's just [or about to] retire.
He did my wife's first op out of the Hove Nuffield and her pouch reversal at Sussex County - seriosuly nice bloke.

He did my pouch formation and takedown and yes, he has now retired. Just met my new consultant Mr Clarke who is taking on his list - another very impressive bloke as well.