I don't know what to do.

[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.......