Help me help my wife please

[perfectpopup]

Hi everybody, hope you dont think i am a fraud but do not suffer with ibd myself ,yet my wife has just been diagnosed.

We are in the early stages of coming to terms with my wifes condition,and am thankful to say at the moment my wife is suffering very few symptoms .

It has taken over a year to get a diagnosis ,and as a couple it has been a very trying year .My wife has lost over two and a half stone and is just over 7st

Cutting to the chase , i feel quiet helpless to do anything and was looking for some ideas and ways in which i can support my wife and actually help her , i now understand alot of what has happened in the past year , but my main worry is my wife has lost all this weight and am now worried in case she has another flare up ,it could leave her in real trouble !!!

Hoping to call on you all for more support and guidance,and look forward to becoming more educated and IBd aware in the future

Many thanks

 

[Astra]

Hiya and welcome to you both

Just know that we're all here for you now, you're not alone with this!
Have a good scoot round the boards and don't hesitate to ask any questions.
First port of call is here


http://www.crohnsforum.com/forumdisplay.php?f=17

there should be advice about gaining weight in there
good luck
Joan xxx

 

[Angrybird]

Hello and welcome to the forum.

We always welcome family who are trying to help their loved ones so do not worry on that score. Out of interest is your wife on any meds now for her crohn's and if so which ones? How often is she seeing the GI doc to see how things are doing?

There is a lot of helpful info and support here so do have a good look around.

AB
xx

 

[newlymarriedtocrohns]

Hello perfectpopup!
You are not alone. I just joined here for my husband too. From my research and experience so far, I've learned that as a spouse you have a very important and vital role in helping your wife! You can be her dose of optimism, her advocate, her caregiver, and her extra set of eyes in researching potential treatments and cures. It is hard--especially in the beginning as both you and she adjust to the condition--but just keep on being patient and hopeful!

If you haven't found it yet, they do have a Support Forum just for Parents, Family, & Friends. Best of luck!

 

[gemarie]

Hi, i am the crohnie half of my house. Feel free to ask the silliest questions you can think of, they will have been wondered if not actually asked before

 

[lola99]

I was diagnosed about a 1 1/2 year ago after suffering undiagnosed for 5-6 years. My husband was very supportive during my flare up and i think thats all you can really expect to be able to do. Be supportive,do nice things for her. Finding a good doctor will help her get the advice she needs to put the weight back on. Maybe try some nutritional drinks that help gain weight. Good luck.

 

[perfectpopup]

wow , what a fantastic response thank you all so much for your kind words and advice!!! it has been a rough ride up to now , mainly the not knowing , but we are beginning to piece the puzzle together ,

We are in the hands of a good consultant and have an appointment to see a IBD nurse, my wife is taking a slow release tablet called "pentasa",4 in the morning ,and 4 at night,and luckly suffering no side effects.

I have disscussed with my wife about keeping a log of things like her weight , bm , diet etc , just so she has something to refer to .

I supppose like most spouses and partners i have felt very helpless , and sometimes probably not helped at all ,but finding forums like this with the help and support and information are going to make things alot easier ,

thanks again...

 

[Angrybird]

If your wife finds it hard to get the weight back on it may be worth asking the doc/nurse about some shakes to have along with food - these may help in getting her calorie in take back up. Usually dieticians precribe these and will monitor how she does on them, they are also easy on the 'ol tum. Has there been any noted any improvement in the Pentesa? Is this the only med she has been put on thus far? I am pleased to hear that you are happy with her doc - it is very important with an illness like this to have a good relationship with them and to be happy with the care she is getting.

 

[nitty]

Welcome!

The diary is a brilliant suggestion.

I was diagnosed this time last year, and I started keeping a diary which has been invaluable. You can guarantee that you never quite remember how things are or how long different symptoms last for.

I just have a small diary that I keep up to date each evening when I go to bed. Your wife will find her own things she wants to keep a record of, but generally it is helpful to make note of:

>what goes in (medicines and food/drink),
>what comes out (frequency and consistency of bowel movements, how urgent it is, whether any blood/mucous is present),
>when and where she has any pain,
>levels of stress/anxiety,
>any other symptoms.

[If she doesn't want to write down a stool description - it's not fun - then she could refer to the Bristol Stool Chart, and she can then just put the relevant number from 1-7 to document it].

All of this will help her to work out any connections, causes and effects, whether medicines are helping etc...

It might sound like a chore, but I have found it to be one of the most useful things to do. It's so much easier to monitor your condition when you can see it on paper (I've even made little graphs with the info to see it really objectively!). Your wife can take the diary to clinic appointments for the doctor/nurse to look at if necessary.

The fact that you are on here demonstrates your wish to support your wife and understand her condition. It's not an easy condition to discuss in detail, so only the two of you can work out what level of openness suits each of you, but as long as you keep the channels of communication open then things will be easier to deal with.

Good luck!

 

[David]

Hi there and welcome to the community. I'm glad you joined

My biggest piece of advice is learn everything you can about Crohn's Disease. As you're going to find, it's a steep slope and there is so much to learn, but your wife needs someone to advocate for her.

The first place I'd start is here. That article discusses mesalamine which is the active ingredient in Pentasa, the medication your wife is on.

All my best to you and your wife.