Posted , 7 users are following.
I'm 23 years old and have just recently been diagnosed with UC. Feel like my whole world has been turned upside down and feeling very isolated and lonely, could really do with a chat with someone who understands, anyone out there with any advice?
0 likes, 16 replies
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Shal75 sharni2328
Posted
Hi sharni, sorry to hear of your diagnosis but your not alone! This website is great for getting answers to lots of questions and queries and ive found that everyone on here are really supportive. So don't feel alone!
I've had UC for 4 years, flaring on and off and controlled by many different types of medication. But more recently I had to have an ileostomy and is probably the best thing I've ever done. But that's way too early for you yet.
Are you on any medication or enemas? Are you being seen by a consultant at the hospital?
Shal X
sharni2328 Shal75
Posted
I've had quite a few replies already and I already feel much better! Just being able to talk to people who really understand is such a nice feeling!
I'm on Octasa and steriods along with iron replacement theropy. I was also recently using steriod enemas to calm the inflamation, which really seemed to have helped!
Yes I'm being seen by a consultant although not very empathetic! I'm trying to get changed over to someone new at the moment!
Sharni x
Shal75 sharni2328
Posted
I'm glad you're feeling better Sharni, like I said there is a lot of support here and probably these kind of Websites are best for looking things up as Google will just drive you crazy with stories!
I've not been on Octasa before, I was on Pentasa but if it's working for you then that's great, steriods and steriod enemas are good. Keep up with the enemas. I found that at times the Pentasa enemas were all I needed as the enema would go as far up into the colon where the foam steriods only seem to go into the rectum.
Keeping a batch of enemas handy (for any future flares) always helps to reduce inflammation in the first instance.
With your consultant your right to ask for someone else, if you don't feel confident with him then that's just not going to make you feel any better! Out of interest it might be an idea to find out if they have a IBD nurse there too. Most clinics have a IBD nurse and a sort of help line run by the IBD nurses, they are a really great source of support when you can't speak with your consultant.
I hope you start to feel a little better.
Take care.
Shal x
sheila91262 Shal75
Posted
Hi Shal, glad the ileostomy has worked well for you. Have you considered a reversal in the future? My son at 29 had a j pouch reversal and is delighted with the results.
Hi Sharni, sorry for the news, a real shock when you are young. My son was 27 and super fit and never ill. He had surgery quite soon as the meds didn't work for him. We learnt a lot very soon about the disease but the Consultants etc are very varied in their choice of treatments. In retrospect we would have gone to the experts at St Mark's London or John radcliffe London, both NHS hosps are at the top for Gastrointestinal diseases and their treatment. Good luck to you.
pca sharni2328
Posted
Hi Sharni,
. So sorry to hear that you have developed this wretched condition. I am a 63 years old man who was diagnosed with UC five years ago, just a few months before I retired from work. I remember all too well being told by my consultant that I had UC and coming home and 'googling' the disease (I hadn't heard of it before) and what I read on various sites horrified and depressed me, but here I am five years on, still going strong. I haved been on mesalazine ever since the diagnosis in November 2011 and although things have changed for me (due more to other unrelated conditions than the UC) I could be a whole heap worse! So I think what I am trying to say is don't get too downhearted; there will be difficult times, certainly, but hopefully for the majority of the time you will be active and leading a reasonably normal life. You have a whole heap of contacts on this forum who are always ready to encourage and advise, and there are charities, such as the Crohn's and Colitis UK which has a mine of information. Take care and all the very best! Peter x
sharni2328 pca
Posted
Hi Peter,
Thank you for your reply. I'm sorry to hear about your diagnosis. Googling definitely scared me!! Everything seemed so drastic and worst case scenario! So far my condition hasn't been awful, it's no walk in the park but I've read and heard so much worse, so although I feel awful, I've been lucky. Thank you so much for responding and making me feel less alone, it's nice to hear other people's stories first hand, even if they're not exactly fairy tales! Take care of yourself Peter, thank you again! Sharni x
pca sharni2328
Posted
Thank you Sharni for taking the trouble to reply; that's very kind of you. You are right about worst case scenarios. I remember thinking that surely it can't be this bad, as I read story after story - and then I realised that the only story that really affected me was my own and I was then determined to make the best of whatever UC threw at me and to date, it has been more of an inconvenience than anything else. We're all here for you, Sharni, so never hesitate to post any questions you may have, or just to ask questions, and enjoy the support and love of other sufferers. Yes, this is indeed a club of which no oner really wants to be a member!! Best wishes, Peter xx
sharni2328 pca
Posted
No trouble at all! I'm just glad you took the time to reply to me! You're so right! I need to focus on myself and eliminate my stresses and just make me well again! Thank you so much, I'm very glad I found this site and have already managed to pull myself slightly out of the dark hole I felt I was in! Thanks again Peter, Sharni x
pca sharni2328
Posted
You're more than welcome!! Pete x
michelle34409 sharni2328
Posted
Hi I can't offer any advice but I know exactly how you feel . I was diagnosed last week after 3 drs and a consultant assured me I had hemmoroids. If you want a chat feel free to message me
sharni2328 michelle34409
Posted
Hi,
It's all so confusing, especially when you're told to Google it and find out for yourself! I just feel like I needed to speak to someone in my shoes! I'm sorry to hear you're feeling the same! I was diagnosed in July and it's still all feels so new!
michelle34409 sharni2328
Posted
sharni2328 michelle34409
Posted
Yes so was mine, I woke up while the Dr was taking the biopsies! After, he confirmed I had a form of Colitis but would need to wait for the results to confirm if it was Chrones or UC. I waited 2 months for this not knowing! I was given a leaflet and told there was plenty of information online! I think I went into denial because it felt like this can't be happenening to me? Surly they'd explain it better? Being a 'life-long' condition and all! I'm sorry you had an awful time but I'm glad you understand where I'm coming from!
michelle34409 sharni2328
Posted
It really is a awful thing to have but I'm thankful at the minute mine isn't too bad . I decided against telling my 2 children aged 10 and 14 what was wrong with me because I didn't want them to look it up and fear the worst . As far as they're aware it just a bit of inflamation that the suppositories with fix.
stephanie71259 sharni2328
Posted
Don't feel sad and isolated. There's loads of us! Anyway you might not have too much trouble. It can go into remission for ages. And even if you do have a flare there's lots of drugs and help. Your world hasn't turned upsdie down, it's just a bit of a shock. Eventually you accept it and come to terms with it. 23! I'm sure you have loads of happiness and good experiences that will happen like any other 23 year old.
sharni2328 stephanie71259
Posted
So far it's been a bumpy ride, but I've been lucky compared to some of the stories I've heard! It's just getting everything under control and calmed down. I've been up and down on the drugs and other issues but I'm hopnig that this course of steriods will have helped!! Thank you for taking the time to reply to me!