Recently diagnosed colitis

Nearly three out of four ulcerative colitis (UC) sufferers (73 percent) responding to a new nationwide survey say not feeling well has become a normal part of life. Furthermore, they describe UC as disruptive when it comes to their relationship with a spouse (64 percent), their sexual relations (75 percent) and their emotional state (82 percent).
How do you cope with colitis ? Are you struggling with the emotional effects ? Even if a problem shared isn't a problem halved it may help to discuss it with people in the same situation.
kneedown
Active member
Posts: 7
Joined: Sun Nov 27, 2016 12:25 pm
What is your status: Colitis Sufferer
Date first diagnosed with IBD: 19 Nov 2016

Recently diagnosed colitis

Post by kneedown » Sun Nov 27, 2016 12:51 pm

Hello everyone, I have recently had my biopsy results that confirm I have UC, I believe I have had it for around 8 months. I had the examination 9 weeks ago where biopsy's were taken and was told it was 'suspected' UC and given 500mg Asacol suppositories twice daily, since confirmation and there being no improvement my medication has been changed to 1g asacol suppositorie once daily and 1g asacol granuals once daily. I have only just started researching this decease and had no idea just how serious it is or that it was incurable, to be honest I'm very frightened, I have given up alchohol and with the help of my wife have started a complete new eating regime. I already suffer from depression and this diagnosis has made it much worse, I am having panic attacks again albeit not as bad as I have experienced in the past. On top of all this I have had my ESA removed and as such have no source of income at the moment.
I find myself in a very bad place at this time and would be very grateful for any positive input, many thanks in advance, John.



rogalin47
Power poster
Posts: 1016
Joined: Mon Aug 09, 2010 4:28 pm
What is your status: Colitis Sufferer
Date first diagnosed with IBD: 01 Jul 1992
Location: Hereford

Re: Recently diagnosed colitis

Post by rogalin47 » Sun Nov 27, 2016 7:03 pm

Hi John
Sorry to hear you've had a confirmed diagnosis of uc, it's a horrible disease and yes it's incurable, BUT it's important to focus on the fact that it IS treatable.

There are many many drugs available for the treatment of uc, both in oral form and rectal form....enemas and suppositories. There are a lot of people who live perfectly normal lives whilst also having uc, some people get flare ups regularly and of varying severity but also there are lots of people who only ever get the occasional symptom.

I'm sure what you have read on the internet has scared the living daylights out of you but I expect what you have read was the worst case scenario. I was diagnosed at the age of 24, I'm now 49 and have got married, had three children and held down a job in the last 25 years all whilst living with uc. I had surgery three and a half years ago to remove my bowel. I'm guessing you've also read about colectomy surgery and that has frightened you too but surgery is absolutely last resort and the percentage of uc sufferers who do have to go down that route is very small. Those of us who have are definitely in the minority. Most people find their uc is managed perfectly well with prescription drugs. I'm not going to lie and say life with a bowel disease is a bed of roses because it isn't sometimes.....there will be bad days but the good days far outweigh the bad, believe me you will cope, I have and I'm still around to tell the tale! The most important thing for you now is regular check ups, make sure you take your prescribed meds and try not to worry too much. Try to relax and not stress too much either. And keep in touch on here. There are some amazing guys on this forum who are happy to offer advice and support or to just lend a sympathetic ear. You can ask anything on here, no question is too small, too daft or too rude! We all know what you are going through and if we can help in even the smallest way possible we will.

Hope you start to feel better soon. Keep us posted
Rogalin


21 years of evil UC over on 6th April 2013, welcome to Norman the stoma whose given me my life back!!

kneedown
Active member
Posts: 7
Joined: Sun Nov 27, 2016 12:25 pm
What is your status: Colitis Sufferer
Date first diagnosed with IBD: 19 Nov 2016

Re: Recently diagnosed colitis

Post by kneedown » Mon Nov 28, 2016 12:51 pm

Hi Rogalin, many thanks for your reply, I find your response quite reassuring and yes I beleive I am being very negative at the moment, the life changes are a lot to take in, things like dietry changes I think I can eventually get used to but until I started to realise how what I preveously took for granted like going out for a meal, snacking, having a fish & chip and a pint whenever I felt like it all has to change. The thing I am finding most difficult to cope with is the changes in my social life, I'm 64 years old and for most my adult life I've enjoyed going out for a pint virtualy every evening and enjoying a chat with friends, my wife also enjoyed joining me albeit only a couple of nights a week, at the moment I'm just staying in and finding that very depressing, I do have quite good willpower but I now realise that going for a pint was a big part of my life which has now gone.
I hope I can adjust and am going to try to take each day as it comes, I have an appointment with my consultant on the 7th Dec and maybe something positive with come from that.
I know its early days and I think that joining this forum will be invaluable, it has to be positive to be able to talk to people that understand what I'm facing, again thank you for your reply Rogalin and all the best to you and your family, regards, John.



rogalin47
Power poster
Posts: 1016
Joined: Mon Aug 09, 2010 4:28 pm
What is your status: Colitis Sufferer
Date first diagnosed with IBD: 01 Jul 1992
Location: Hereford

Re: Recently diagnosed colitis

Post by rogalin47 » Mon Nov 28, 2016 9:13 pm

Sometimes just being able to share your fears and concerns with others who know exactly what you are going through and feeling can be a real comfort, it helps to know you are not alone in dealing with these issues. You've taken the first step in dealing with the emotional side of uc by reaching out to people on here, doctors deal with the physical aspects of this disease but can't possibly understand how it can affect us mentally and emotionally unless they too suffer from it so just offloading your worries to people who do understand can be such a great help.

As regards your social life you will get it back, its definitely not over. Once your symptoms are under control and you have regained your confidence there is absolutely no reason why you can't enjoy your trips out and your pints down the pub. You're doing exactly the right thing by not looking too far ahead and taking life one day at a time. In a few weeks you'll be able to look back and see how much progress you have made.....even baby steps can come a long way.

Before your appointment with the consultant write down everything that concerns you, frequency and consistency of bm's, questions about meds....everything and take it with you. That way you won't forget anything. Let us know how you get on too
Rogalin x


21 years of evil UC over on 6th April 2013, welcome to Norman the stoma whose given me my life back!!

kneedown
Active member
Posts: 7
Joined: Sun Nov 27, 2016 12:25 pm
What is your status: Colitis Sufferer
Date first diagnosed with IBD: 19 Nov 2016

Re: Recently diagnosed colitis

Post by kneedown » Tue Nov 29, 2016 12:52 am

Hi Rogalin, I cant thank you enough for your kind and reassuring words, I'm finding it a great comfort and my confidence in the future is growing thanks to your knowledge and inspiring replies. My wife and I went to our local tonight, after several nights in I found it quite a relief just to get out of the house, also it meant I had something to look forward to, I drank only orange squash but I got to say hi to friends and my wife and I had a game of darts.
I will take on board what you suggest about writing down the numerous questions I have and let you know the responses I get, mentally I think I'm getting stronger and my symptoms are no worse, if anything I believe I may be improving slightly.
To hear your words of getting my social life back in the future and the thoughts of being able to sample a pint of real ale again fills me with hope, of course I realise that I will have to make changes to my lifestyle which I am prepared for, I will keep all informed of my hopeful improvement, once again many thanks, John.



rogalin47
Power poster
Posts: 1016
Joined: Mon Aug 09, 2010 4:28 pm
What is your status: Colitis Sufferer
Date first diagnosed with IBD: 01 Jul 1992
Location: Hereford

Re: Recently diagnosed colitis

Post by rogalin47 » Tue Nov 29, 2016 4:55 pm

Hi John, great news that you felt up to going out, a night socialising with friends does wonders for your self esteem doesn't it. A game of darts and friendly banter sounds as though it's done you the world of good. :great:

Thank you for your kind words too, glad I've been able to help a little. This is a fantastic forum and I've had a lot of help and support from some of the amazing members on it.......you know who you are guys (Karen tops the list) .....It's nice to think I've been able to give a little bit back.
:love: :love:


21 years of evil UC over on 6th April 2013, welcome to Norman the stoma whose given me my life back!!

kneedown
Active member
Posts: 7
Joined: Sun Nov 27, 2016 12:25 pm
What is your status: Colitis Sufferer
Date first diagnosed with IBD: 19 Nov 2016

Re: Recently diagnosed colitis

Post by kneedown » Thu Dec 01, 2016 4:16 pm

Thank you for your recent reply Rogalin, I seem to be doing a little better each day, I suppose its good news that I seem to be a little constipated at the moment but it has to be better than the alternative, the great news is that I've had my ESA claim re-instated :party: this will take a great deal of stress off me, I feel now that I can concentrate all my efforts on getting to a point of managing this decease instead of suffering it, I've only just opened the letter and its difficult to descibe the relief I'm feeling at the moment.
I hope you and all the other forum members are doing well and that as I learn more I will be able to contibute to the forum and help others as I am being helped and supported, regards, John.



Karencraig
Power poster
Posts: 1596
Joined: Fri Apr 15, 2011 9:51 am
What is your status: Colitis Sufferer
Date first diagnosed with IBD: 08 Jan 2010
Location: Rochdale Lancs

Re: Recently diagnosed colitis

Post by Karencraig » Tue Dec 06, 2016 8:34 pm

Wonderful news on your ESA, that takes a worry off you.
Don't forget you are at the start of a journey. You have been diagnosed, and asacol is the first thing you are given. As Rogalin said there are loads of different drugs out there to help bring your UC under control. Flare ups should not be the norm. Like Rogalin I had my bowel out because flare ups where the norm for me. There are LOADS of people where meds work really effectively. and even if the first one doenst particularly work, theres the next one, and the next one. (PS surgery for me was a life changer - it just got better)

Hope you've a list ready for tomorrow. Write down everything you can think of to say or ask. I tended to just hand it over and let my consultant read it.
Don't underestimate your symptoms, tell him as it is.

Think about getting a radar key. It gives you access to disabled toilets, including those in pubs. Some councils have a charge, others don't. You can also order one off the RADAR site. worth their weight in gold and give you confidence to go out without having to worry about queuing.

Best of luck tomorrow


EX UC sufferer,surgery on 1 March 2012!!! Marvin (Stoma) became my life enhancer.

kneedown
Active member
Posts: 7
Joined: Sun Nov 27, 2016 12:25 pm
What is your status: Colitis Sufferer
Date first diagnosed with IBD: 19 Nov 2016

Re: Recently diagnosed colitis

Post by kneedown » Wed Dec 07, 2016 10:33 am

Hi everyone and a special thank you to 'Karencraig' for your reassuring reply, well its my first consultation with my specialist today and I do feel a little aprehensive, I'm experiencing mood swings at the moment, up one minute down the next, yes I have a lot of questions and my wifes coming with me to ask the questions I've not thought of, at present I'm concerned about constipation and also the terrible pain in my left shoulder, hip and upper leg and my feet are aslo very painful, I'm scared of taking pain killers, I dont even use 'Ibuleve' anymore. I have been going out a little more and having a couple of pints which helps a lot.
I'm trying to stay positive and hope today will bring some clarity as to how I better manage this horrible decease. Maybe my next post will bring some good news. I have read so much on this forum and I do realise that there are people on here much worse of than myself so I'm going to stop 'bellyaching' :lol: and face this challenge head on.
I find all of your experiences inspirational and I shall endevour to follow your positivity, best wishes to you all, John.



philayl63
Power poster
Posts: 217
Joined: Wed Aug 25, 2010 6:07 pm
Date first diagnosed with IBD: 0- 2-2001

Re: Recently diagnosed colitis

Post by philayl63 » Wed Dec 07, 2016 5:04 pm

Hi John, some great advice from Karencraig and Rogalin, then again I wouldn't expect anything less from the "Dynamic Duo" of the Colitis world :lol: I suffered for over 12 years before deciding that enough was enough and opting to take the damn colon away, but that's another story or two! Have you tried drinking bitter or lager shandy, this is what I did, it looks the same as beer so no one knows any different unless of course you can get them to buy all your drinks, and if you can let me know and I'll join you! Your best friend is Loperamide if you have to keep dashing to the Loo, they allowed me to go practically anywhere without a problem, even though towards the end of having to cope with the disease I could take anywhere up to 17 tablets a day. I would definitely go down the route suggested by Karencraig and get a radar key, even having one gives you some confidence that there is a place to "run" to if needed, and they are often cleaner and have a supply of toilet paper, saves you tearing up the morning paper :whistle: You will find someone on here will be able to answer nearly all questions you have, we have all been through it so you are not alone (God I'm starting to sound like the advert for 118 118 :shock:) Good luck and happy drinking, Phil



Post Reply