[Decadence]

Hi

This weekend my wife was taken into hospital and told that she has to have some of her intestine removed and will need a colostomy bag. She has suffered with an illness called Ulcerative Colitis for 3 years but recently it has got quite bad. I don't know what to do or say. She's only 26 years old and it is our son's 1st birthday on Sunday which she will now miss due to her being in hospital.

The thing is that I do not think her consultant has exhausted every line of treatment to help her before diving straight in and telling her she must have the operation. It just doesn't seem right. I don't know whether it is just me in denial but she has never been allowed to finish a course of whatever treatment he put her on. She would try something for a bit and if it didn't work very well he would switch her to something else, it was all a bit too hasty. I am going to question it more when I go to see her this afternoon but at the same time I still need to come to terms with the fact that my beautiful wife is going to need a colostomy bag for the rest of her life...

I know it isn't about me at the moment, of course I will be there for her every step of the way as she means the world to me but there is nobody I can talk to about this and I feel like my head is about to explode with all the questions, feelings, fear and emotions inside it...at the same time I feel bad for thinking of myself because there really is no time to do it.

I have no experience with this type of procedure...or living with someone who has a stoma (the name given to the piece of intestine which will be on the outside of her body).

Anyway...this post is all over the place and not too legible so I will give it a rest...it's easier to type something than it is to talk to people you know sometimes...any help or advice would be very much appreciated.

Thanks.

[Mr_Wistles]

Mate,

What do you say? A horrible thing to come to terms with but you need to be strong for your missus.

Are you nhs? have you seen a private consultant for other possible alternatives?

[RichardK]

Have a look on this site: http://www.nacc.org.uk there's probably a support group somewhere near you.

I suffer from similar problems to your wife, and I've tried many different treatments to try and fix things, and at first many of them improve things, but unfortunately the fix is only short term, and often things then become worse than they were without the treatment. If this is happening for your wife then it would explain why each of the treatments aren't being tried for long.

You need to try and see past the bag and look at quality of life. Living with colitis can completely ruin the quality of life, and having a bag can result in a much better quality of life.

[PoochJD]

Deacdence,

My sincerest condolences on the situation you and your wife are currently in. As Russell, above, has said, though, you need to be strong for your wife. As for her missing your Son's first birthday, he is unlikely to remember it, and you can always have/do something once your wife is out of hospital (or at least in a more comfortable state).

As for the doctors, I would talk to them again, ask for a second or even third opinion, just in case. But, they may be pressing for her to have the operation, rather than risk a delay by trying other medications and treatments, which may only delay the inevitable operation. So, maybe they are actually looking after your wife's interests. But, like I said, discuss things with them, because I don't know anything about the condition.

With regards to help and advice, there are a few websites that may help you out. I've done a quick check, and the following appear to be legitimate, reliable sites, rather than dogy ones. I do hope you can find a bit of time to have a scan of them, as they may prove very helpful.

Ulcerative Colitis UK - LINK
(This site also has a forum, which should be really helpful for you and your relatives, if you want to get information on coping with the illness, and how you can deal with it too.)

Bupa Factsheet - LINK

NACC Website - LINK
National Association for Colitis and Crohns Disease

BBC Helath Site - LINK

Best of luck, and don't forgot we're all standing behind you and your family, at this difficult moment in time. Keep a strong face on, okay?


Pooch

[Decadence]

Yeah...I know I can look past the bag, dealing with the effects of surgery is going to be tough but we'll get through it. But there is a gnawing thing in me that says I should get a 2nd opinion or something...we are on the NHS and my parents have said that they will pay for a private assessment if we want one...I just don't know where to start...my wife is far too weak and ill to fight this so has almost resigned herself to her consultant's decision...I don't think it is right...the operation is not for a while as she has to have counselling and talk to specialists so there might be time enough to look at other options (or clutch at more straws)...

[Pat_C]

I think it helps to consider that although this may be unpleasant and undesirable, it doesn't sound life threatening - which would obviously be far worse. Try to focus her thinking on the up side of (presumably) getting rid of pain and/or discomfort, and just having to adapt to the change. I expect there are many people who are now glad they have had this done.

Try not to add to her fears and anxieties by displaying your own, and remember that they will be greatly compounded by the initial shock of this news.

[johntheexpat]

Originally Posted by Decadence

Hi



I know it isn't about me at the moment, ........
but there is nobody I can talk to about this and I feel like my head is about to explode with all the questions, feelings, fear and emotions inside it...at the same time I feel bad for thinking of myself

Who cares for the carers? Well we do for a start. Stop worrying about bending our collective ear because we're here for you.

[RichardK]

The NACC site mentions as an alternative to a bag. '...replacement colon (ileo-anal pouch) is created by the surgeon reshaping the end of the small intestine...' I think you should at least make sure that option has been checked out.

As for a 2nd opinion, its a good idea for, but before paying for a private assessment you should make sure you won't end up seeing the same person as you've already seen on the NHS.

[Decadence]

Originally Posted by RichardK

The NACC site mentions as an alternative to a bag. '...replacement colon (ileo-anal pouch) is created by the surgeon reshaping the end of the small intestine...' I think you should at least make sure that option has been checked out.

Hi, thanks. Yes this option has already been ruled out because they have to be 100% certain that it is not Crohn's disease (similar to UC) because there is a likellihood she may die if they try it unsuccessfully. At the moment they are not 100% certain.

[dBrowne]

That is an awful decision to face. I'm sure you are both going through hell.
I'd have to agree with Russel_Piper. Something as irreversible as this warrants at least a second, private, opinion. I would want to reassure myself that I was being sold the most effective solution rather than the most cost efficient. I take Pooch_JD's point that time may be of the essence, but if not, be sure there are no alternatives. Sorry if I'm belabouring the obvious.
Best of luck to you both.

[Orson]

That's awful news to have been given, and to come to terms with. Obviously there's the second opinion & different doctor option, which I'd certainly utilise, but I'm posting to share my (indirect) experience.

My father - in - law had an illness, and as a result, had to have part of his intestine removed, resulting in a permanent stoma. Now for me, this would have been a nightmare scenario, one which I found the very thought of made me feel physically sick. To me, it would have felt like I'd lost all dignity.

However, in practice...

Firstly, from 'other peoples' point of view, you just don't know that he's wearing one; physically, he looks no different. As far as the general public are concerned, they have no idea that he has a stoma. When he first had it, he wouldn't drive, wouldn't go out shopping or anything, he was to frightened of making a mess. However, this thought lasted less than a week! Once he realised that they don't come off, don't smell, and don't actually make any difference to his appearance when clothed, he soon got used the them, and now carries on his life almost exactly has he did before.

I say almost exactly, as he has had to omit some things from his diet, things that are difficult to digest, but really, these are so few, they don't bother him anyway, and that really really is the only difference. As for what he does physically on a normal day, walking, shopping, driving, gardening, sitting, sleeping etc, he does all that he did before.

Now, don't get me wrong, there have been a couple of 'accidents', due to (careful wording ahead) him wanting to get 'best value' out of the bags - I'm sure he thinks it's wasteful to change them too often! but when I say a couple, I do mean two. Although this was one of his fears, and where the dignity side of it comes in, we've been able to laugh these off - and if you've got a one year old, well, it's only poo when all said and done!

I guess what I wanted to say was that in reality, this procedure makes so little difference to the way you conduct your life, you will be fine with it.

[Kieron]

I really don't have any advice mate (I just don't know anything about the subject/condition) but wanted to say that you and your wife will be in our prayers tonight.

All the best.

Kieron

[dognosh]

I am not religious but I hope that any god/gods you believe in looks favourably on your wife and family

p.s. I have heard of your EVE name,but can't place it

[RuddyRoad]

Hello Decandence

I dont really know you, but I wanted to post to your thread. First I should declare an interest. I have been involved in the care of patients like your wife in the past, so I am speaking from a certain perspective. Also, this is obviously a very real and personal turn of events for yourself and your family, so I would like to commend you for being brave enough to talk about this online.

Conditions such as ulcerative colitis (and Crohn's disease) are always difficult to predict and responses to treatment vary greatly between patients. For these reasons, your wife's doctors will be in the best position to advise you on the best way forward in her situation. Bearing this in mind, I would like to give you a few of my own thoughts:

1. Doctors, despite their best efforts are fallible. They all realise this, so almost never take offence if a patient asks for a second opinion. So, if you or your wife have doubts, exercise your right to get the opinion of another expert. I guess there is a fair chance that opinion will echo the first, but you may feel a bit happier that you've received the best advice. Of course, there is no 100% right or wrong decision in these circumstances.

2. Although surgery and a stoma sounds like a very drastic treatment, this has to be weighed up against the risks of not performing the surgery. Quality of life has been mentioned, but there are other risks: uncontrolled ulcerative colitis can sometimes present as a real emergency, with the colon becoming dangerously enlarged - there's a risk of perforation, infection and a mortality associated with this complication. In the long-term, an inflamed colon can increase the risk of colon cancer - it's still not likely to happen, but a colectomy eliminates this risk. There are other issues, but I won't go into them.

3. There are a number of new treatments for inflammatory bowel disease - they are all injections and fall under the title of "Biologicss" or "Biologicals". Now, it would be wrong of me to make any suggestions regarding their appropriateness for your wife, but it might be something you want to discuss with the specialist.

4. If the surgery does have to be performed, I would echo the sentiments of other forum members. When patients live with a chronic disease, I think they sometimes have forgotten what it is to lead a "relatively" normal life. Constantly taking medications, using enemas and putting up with the tiring nature of managing a chronic condition like UC all take their toll. To adopt a glass is half full approach, it is possible the surgery will give your wife (and yourself) a new lease of life that would never have been possible previously.

Decadence, I would like to give you and your wife my best wishes, and whatever happens, I am in no doubt you will be a supportive husband in the times ahead. You've already demonstrated that with your posts in this thread, and you should be proud of yourself.

Take care,

RR

[pave]

Just want to say sorry about your news,not much I can add...just,hope it all works out ,and my thoughts are with you.......

[shahedz]

sorry to hear about your wife Decadence, my mum has been really ill recently and has caused her to lose ability completly in one of her hands, she has been really , really depressed at not being able to do basic things, open doors, cloth her self etc, slowly by slowly she is learning to be independent again. And has had to adjust her life style to accomodate her disability but none the less life will be back to "normal" for her soon - what i'm trying to say is that although the future looks bleak now it does sort itself out,

best of luck bud

[Decadence]

Thanks guys...I just got back from the hospital.

At the moment my wife is on a drip at the hospital because not eating for a few weeks and visiting the bathroom every 45 minutes for 5 days in a row tends to take it out of you. She is feeling much better compared to yesterday when it really was a very black time.

She has also been visited by a new doctor, a consultant surgeon, who asked her different questions to her usual specialist. He was surprised a couple of times when she told him that she hadn't finished courses of treatment and certain avenues had not been explored before she had been recommended for surgery. He has put her on a course of steroids to bring her condition under control hopefully so she can be out in time for our boy's 1st birthday on Sunday (fingers crossed).

Anyway, we've decided that when she gets out we're going to go back to our local GP, who we have absolute faith in, and ask him what he thinks about the situation and the gaps in treatment...her surgeon has said that although it is reasonably urgent that she is prepared for surgery it won't be for a few weeks in order to give her time to have a few appointments with speciallist care nurses who will tell her what to expect.

I guess this is our small window of opportunity to get other opinions and maybe, if were lucky, some miracle might happen which menas there is a chance she won't have to have the operation...(maybe still in denial but hey...).

Anyay, thanks again for your support, it really means a lot, I am knackered, have a dreadful headache and think I need to sleep.

[PoochJD]

Hi Decadence,

Whenever you get to read this little post, I just want you to know that that's superb news to hear, and I really hope things go okay for you all. Keep us up-to-date, if you can, as we'd all love to know that things go smoothly, whatever action you and your wife decide to take, to combat her illness.

And I hope things go nicely for your son's first birthday too.


Pooch

[Decadence]

Hi Pooch, thank you so much for posting...I don't know why but I keep looking here in the hope that someone will have posted because it is a big help to me and my state of mind.

She came off the drip this morning because it started to make her feel sick, also the steroids are starting to kick in which is affecting her mood and making her feel very down.

She was also meaning to talk to the consultant surgeon with a list of questions she has but when he came round to see her this morning he had a team of students with him and she didn't feel confident enough to ask. Since then she has been visited a couple of times by random students because apparently her case is "interesting"...it's really getting her down because she is confused but too scared to ask for help...

I have been at work this morning because I can't visit her until later this afternoon (not allowed) so will see how she's getting on then.

[PoochJD]

Decadence,

Originally Posted by Decadence

Hi Pooch, thank you so much for posting...I don't know why but I keep looking here in the hope that someone will have posted because it is a big help to me and my state of mind.She was also meaning to talk to the consultant surgeon with a list of questions she has but when he came round to see her this morning he had a team of students with him and she didn't feel confident enough to ask.

1 - Glad to be of help. It's the least we can all do here.
2 - If your wife has a doctor, consultant surgeon or whomever come visit her again, and they come with a group of other people, a) she has the right to ask the others to leave the room, ward or area, and to ask questions whilst the students aren't there - irrespective of whether or not her illness is an "interesting case". But also, more importantly, b) you yourself can also ask, that the students go away if you or your wife wish to discuss something in confidence. Like many of us have said, don't let other people take anything away, from your wife's (or your) ability to ask whatever you need to ask, to the right person, no matter how silly the question may seem. If it's important to you two, then the question/matter should be raised and dealt with as soon as possible/practicable without intrusion from others.

Keep your chin-up. There's a light at the end of the tunnel, even if it is just a pillock with a 3 volt pen-torch!


Pooch

[RuddyRoad]

Decadence

The students are probably doing what they have been told to. Have a quiet word with the ward sister and ask that for the time being your wife isn't exposed to any more students. Next, phone up or go round to see the consultant's secretary and ask to make an appointment with the consultant with enough time for you and your wife to chat about all the things you need explaining. A busy ward round is not always the best time to discuss these matters, and of course the surgeon may be difficult to catch (saving lives in theatre, golf outings etc). Your best bet is to go through the secretary, who should know when the consultant will be available and tends to be fearless.

Remember to go out for a pint or two with your mates, if that's your thing. It's a good release valve to get away from everything for a little while, and may help to keep your spirits up.

Obviously, feel free to ignore this advice

RR

[UrbanT]

Decadence, you have my sympathy. I've lived with Crohns for over 15 years, and have had some very bad times. I've fought tooth and nail for that time not to have an operation, but its not been easy living with the condition as your quality of life will be effected. Without the op, every single thing you do will be focused around the illness, where you go, what you eat, where the nearest toilet is etc.

What I'm trying to say is that you will, in time, consider the operation to be a positive thing as not only could it save your wifes life, but undoubtedly your quality of life will be better too.

[IronGiant]

A friend of mine at Uni had Crohn's but because as he was still a young man he didn't want a stoma. We met up every few years or so afterwards, and each time was quite depressing because each time it was quite obvious that he was going downhill. The last time we met he had had one done and the difference was astonishing, he'd put lots of weight back on and his quality of life was so improved he was adamant that he wished he'd had it done when it was first suggested to him, as he felt he had wasted 10 years of his life avoiding the treatment that would have helped him.

Obviously the two conditions are not the same and individual cases are not the same but it changed his life for the good.

HTH

Dave

Edit: UrbanT, as I was typing this you posted yours so mine is not a reply to yours, though they do seem to fit

[jason g]

just wanted to wish your wife well mate and hope things get better soon, and also try to get some sleep if u can.

by the way a mate of mine on here is a nurse so ask him if he has any advice, his gamertag is KOPCHOIR.

[Decadence]

Thank you so much guys...it's been a bit of a nothing day after all the fuss of the students earlier...she's been left alone for the rest of the day and is feeling a lot better again. I saw her this evening and she had had a bad night with cold sweats and strange things going on in her head.

She was convinced that the nurses had injected something into her drip, even remembered that the name of it began with "Z", which caused bad stomach pains, and even remembered seeing the nurse do it and that as she was injecting her she was commenting that my wife stank...we both found it funny because it was obviously a waking dream but at the time she said it was terrifying, she was dripping with sweat and feverish around 3am but did not want to tell any nurses because she was convinced they were trying to hurt her. Anyway, just in case she did smell she took a 30 minute shower!

The next time she sees the surgeon doing his rounds she is going to ask him for a chat, he seems like a nice guy and always takes the time to explain things (except when surrounded by students)...now that we know the surgery is not imminent (within the next few weeks) we have a lot more time to get used to it and maybe find some alternative from 2nd, 3rd and 4th opinions.

Another rambling post, a bit all over the place but thank you for your replies, it means a great deal.

[Decadence]

Just a quick update...my wife has been seeing the consultant suregeon and he has decided not to proceed with the operation for the time being as he feels that all avenues of treatment have not been explored. He has overruled her original consultant and she is now restarting medical treatment.

It doesn't mean that she will never need to be operated on but at least now there is someone who she feels confident is looking out for her best interests.

Strange that a surgeon wants to treat her and a consultant wants her to be operated on...she is already feeling a lot better and there is a possibility that she may be home in time for our son's 1st birthday on Sunday.

[shahedz]

excellent news

[Mr_Wistles]

Excellent, good luck, and keep your chin up.

[deanym]

Its great to hear a positive turn in your wifes case, I hope all goes well, I was talking about this last night with my partner and we both wish you both all the happiness and contentment as you go on through this.

Dean

[Orson]

Excellent news!

At least you both now have some confidence going forwards.

And I hope you enjoy your sons 1st.