Just been diagnosed with Ulcerative Colitis

[Rich101]

Hi, I have posted on various other threads. But would just like to share my experience with others.

I started having symptoms 9-10 weeks ago, at this stage normal stools, but with a slight amount of blood and mucus.

I went to see the doctor who gave a quick examination, and said it was prob piles.He prescribed me stool softeners. DS

So off I went, but the next day I passed a small blood clot, stools were slightly runnier but not diarrhea yet.
Went back to the docs, who then decided it was not piles, and that I required a camera up there for investigation.

The appointment was 4 weeks away and in this time the symptoms became worse, more diarrhea, blood mucus, pain on passing formed stools at times.

Had a consultation at hopital mid june, and they then booked me in for a sigmoidoscopy.

Again during this time my symptoms did not improve, going to the toilet 4/5 times a day by now, blood, mucus, diarrhea, tiredness, urgency, gas.

So roll on another 3 weeks, and finally today I had my sigmoidoscopy, and have been diagnosed with Ulcerative colitis. I am gutted that I have this incurable disease but at the same time relieved it was not worse.

I have been prescribed some drugs to reduce imflamation, so I am going to see how that goes first.

I would really like to speak to people about there experiences and knowledge of Ulcerative colitis, as I am yet to know someone who has..

Rich

[diane07]

Hi Rich,

I haven't got it but i did look after one of my elderly ladies who had the same thing, she took meds every day for it and led a pretty normal life, i do know there were certain medicines she couldnt take because of it.

Nicola who owns NMP has crohns, so she will no doubt be able to understand how you are feeling.

di xx

[nomorepanic]

I have it Rich but you probably don't want to read my story on here about it as it will scare you more.

What drugs are you on?

Can I ask how old you are as well.

I am sorry you have this disease - it is not nice and you will need to make some lifestyle changes to help it as well.

[nomorepanic]

I mean I have Crohn's as Di said not colitis

[Rich101]

Thanks for the replies.

I am 28 now. And have just been prescribed salofalk enemas.

The consultant seemed confident with that medicine, so Im keeping fingers crossed it can ease my symptoms.

I know its going to be a long journey for me, and have done my own bits of research. Its just a minefield of information on the internet. Some of which is quite worrying, but at the same time, I have read some positive stories on the ways people have got into remission.

I have been having symptoms for around 10 weeks now, and praying that it has peaked, and the drugs will start to heal me.

I did mention to my consutant that around 3 years ago I quit smoking, (because I was joining the police force and wanted to be in peak condition), that after that I started to develop mouth ulcers. No other symptoms at this point.

And this still happens now, and she said it is possible that it was the start of my colitis, but did not show any other symptoms, and was of a very mild nature then!!!!! And she went on to say that U.C and quitting smoking has a link and that somehow the smoking can in some way protect the mucosa of the bowel.

And there I was thinking I had quit for health benefits.lol

Im not saying this is the primary reason for my U.C as Im aware it could of happened anyhow. But it would be very interesting to find out more.

How long have you had Crohns Nicola?

Do you have periods of good remission??

[nomorepanic]

Ahh yes I remember now that my Crohn's consultant said that smoking with Crohn's is a No No but with U.C. it is ok. I thought that very odd lol.

I was diagnosed in Dec 2007 and was ok until Sept 2008 when I had a massive flare-up and was in hospital for 2 months, had a drain in my abdomen for 7 months draining abcesses and was off work for 9.5 months. At the same time I had a heart attack so they could not operate as they would have normally done.

I am on some serious medication now that seems to be keeping things at bay.

I was diagnosed very late in life at 41 which is unusual but I think I had it for many years before that.

I am on a low fibre diet as well and cannot eat more than 1 portion of fruit and 1 portion of veg a day and some foods are a complete no-go (like Oranges).

I hope you get a diet sorted that helps yours too.

Happy to chat anytime about it anyway

[Rich101]

Yeah they say its most common between 16 and 30,

It sounds as though you had a really rough ride, hope things carry on improving for you.

I have suffered anxiety before but I dont think it was quite on the same level as yours.

The strange thing is that I feel fine in myself at the moment, and have done for the past 10 weeks with symptoms. Worry and anxiety have probably got me down a bit. And apart from feeling tired I feel okay. So praying it has been caught before it had chance to get worse.

Thanks for chatting

[Rich101]

Hi Lolly,

I must admit the vast differences of peoples experiences is remarkable.

10 years lolly, thats great. Did you ever take medication????

At the moment I am on salofalk, which seems to have helped a little already. fingers crossed. And over the next couple of weeks I am going to cut out insoluble fibre, citrus fruits, spicy foods, and any hard to digest veg like cauliflour, cabbage,sweetcorn, nuts ect.....

This weekend will be a experiment too, as I have a stag do!!! So will be having a few beers. And will be interesting to see if this has an effect on my U.C.

To be honest whatever it takes to get this disease into remission, I will do. And I think by next week I will be a bit more informed as to what I can and cant have.

How do you find enough to have in your diet lolly, with the exclusion of breads and pastas. Are you okay with cereal?

[HarvestMoon]

My sister had Ulcerative Colitis. I'm glad you got it checked out and diagnosed because she didn't and was rushed into hospital after collapsing. Touch and go as to whether she would survive for a while but she did. That was probably about 25 years ago and she's still going strong although she did have to make some lifestyle changes.

Good luck.

My god, where did those 25 years go?!

[nomorepanic]

Lolly - I was on sulphasalazine - it made me so ill. I was sick constantly and they had to keep admitting me to hospital as I was that poorly with it so they could put me on a drip to rehydrate me and inject me with anti-sickness drugs.

In the end they had to take me off it.

I am now on a drug that is not even licensed for Crohn's and is used for leukemia!

I am surprised they keep giving you colonoscopies as I have never had a successful one done and they say I don't need one doing.

Can U.C. be cured as such? I know that Crohn's can't.

[Rich101]

Hi Nicola and Lolly.

Ulcerative Colitis cant be cured - like Crohns. It amazes me that the diseases are so similar in appearance/symptoms, yet the diet/lifestyle has to be so different.

In crohns its bad to smoke, yet in Colitis it actually has a calming effect on the bowel.

Nicola - I have a friend who has had Colitis for 21 years, and he is on medication which is used to treat leaukemia too!! I hear the treatments are constantly changing, and suppose this has to be a better outlook for us all, as they can treat each level of disease differently.

I am on salofalk enemas, (only 3 days so far), but remarkably after the first dose, my symptoms have gone.(touching all the reachable wood around me), No blood/mucus, first time in 10 weeks.

The stag do is going to reveal weather or not I can tolerate alcohol.

BTW my friend has been in remission for years too.

[nomorepanic]

Yeah it is odd that the bowel reacts differently to the two different illnesses yet they are similar in some ways.

I am on Mercaptopurine Rich - maybe he is on that.

Sadly I lost a friend to rectal cancer 2 years ago and he had Crohn's since he was 18 so it does scare me and the stats are that I am twice as likely to die from bowel cancer than someone else and also that I am twice as likely to get Leukemia because of the drugs I am on - despite the fact they are used to treat it.

Coupled with the fact I have heart failure I do sometimes feel like I have 2 death sentences hanging over my head but people will tell you that I do not let this worry me and still remain positive.

We have to believe that in our lifetime they can "cure" these IBD's and we can live normal lives.

I hope I haven't depressed you too much but there aren't many people on here with similar illnesses so it is good to share things.

[Rich101]

I have got to say the meds I have been put on salofalk, have do far worked wonders. I have had no blood/mucus for over 5 days. And this was even after a stag weekend including cupious amounts of beer and fry ups. So for the time being I am very happy with the results.

Nicola - I know it can affect everyone differently but there will be people out there who have had crohns 40+ years, as with any illness/disease genetics play a certain part to everything but is not a life sentance.

I wish you all the best for the future, and btw this site you created helps so many different people, in so many different ways. I am quite an open person and not affraid to talk about problems/health issues or concerns. But this website has enabled me to talk to other people in similar circumstances and reach to a further audience where I couldnt possibly expect anyone I know to understand what I am going through.

So give yourself a pat on the back, and look forward to a long happy future, as you deserve it.

[nomorepanic]

Thank You Rich.

Sometimes I get really down over things. The heart failure is more likely to kill me than the Crohn's and I have to not think about things sometimes or I get very down over it all.

Then the next minute I am positive and upbeat!

Anyway this post is not about me it is about you and U.C. and I am glad the drugs are helping you and things are looking good.

[AlexandriaUK]

Hi sorry have just seen this and like you have only known what it was for deffinate 2 weeks, this is a good site so hope it can be posted, PM or email me if you want to chat.
I too quit smoking 20 months ago.
http://www.ulcerativecolitis.org.uk/colitisforum/search.php?t=1368

[chococat]

Hi i have not been a member of this site for very long but i have Ulcerative Colitis. I have suffered from it for 5 years now, when i was diagnosed i had never heard of it either. There is a good site to look at that will help a lot it is http://www.nacc.org.uk/content/home.asp where there is lots of information or if you want to ask anything pm me and i will try to help.