Looking for advice on how to help my partner with impending diagnosis

[Viola08]

Hi everyone,

I'm wondering if anyone can give me some advice - I am a 24 year old London lady looking for advice on how to help my boyfriend, who is currently in hospital awaiting a formal diagnosis.

He was admitted to hospital yesterday following weeks of pain and doctors suspected appendicitis. However, since he was admitted, scans have shown an inflammation of the bowel and doctors are now running further tests as they think he has Crohn's. Obviously he hasn't been formally diagnosed just yet but I wanted to ask for some advice so we are prepared to help him in any way we can if he is diagnosed.

I have fairly limited knowledge of Crohn's disease although I am aware of the key symptoms and complications associated with the disease - I also know a few people who have it although I don't know which treatments they use.

Any advice anyone can give me on helping a loved one deal with diagnosis, initial steps to take to help him feel better, how you coped if you are a sufferer, etc, that would be greatly appreciated. He is otherwise extremely fit and healthy and is understandably very upset and frightened about the prospect of a lifelong condition (as are we!)

Thanks!

 

[Axelfl3333]

The first thing to remember with crohns is it eventually gets better the meds aren't,t magic bullets they take time to work.be wary of dr google it's good to be informed but he never delivers good news!i found taking a note of food which causes issues then avoiding them helped but it's good to have as varied a diet as possible,exercise is a common theme seems to help when he,s able.i personally have found being regimented with taking meds if it's 9am it's always 9am.if he,s a smoker,stop!build a relationship with your clinic nurse generally fountains of knowledge and usually more approachable than consultants most of whom have the personal skills of dead fish(sorry dead fish).alcohol wise treat with caution I find lager horrible but spirits and alcopops fine,we all need a night out!good luck all the best

 

[Viola08]

Thanks so much - very helpful!

 

[astarks]

I would say for me, having a support group in person, if possible, or online like this forum, if not, can be really helpful. I felt quite alone after I first was diagnosed, especially as a child, and it was hard to understand why other people could go off and do all kinds of things that I was forbidden to do - that never 100% goes away.

Be patient with the doctors and the meds. Sometimes you have to go through a lot of drug and diet regimens before you find one that works, but try to keep in mind that the doctors are (for the most part) doing their best. They want you to get better. But sometimes the treatments have to be very powerful, which can cause other difficulties. Keep the lines of communication with medical personnel open.

Even though it's extremely difficult, don't use the disease as an excuse to be unhealthy. If he's too weak to do true exercise, just start with stretching or walking. Even though "unhealthy" foods can sometimes be the ones which seems to cause the least pain, remember that too much processed junk food, sugar, etc., can also cause major problems in the long term (at least for me, although diet is pretty case by case).

Probably the hardest, and maybe also the most important, share his frustrations about the disease with as many people as he feels comfortable with. After I was diagnosed, I bottled everything up - still do, to some extent. I went years of being questioned and told I was lying about being sick pre-diagnosis, so it's hard for me to trust people to react well. But, bottling things up causes emotional stress, which causes flares in most if not all Crohn's & colitis patients.

Crohn's can be frightening, but if you take things day by day, step by step, you can stop it from being totally overwhelming. It is possible to live a full life even with a chronic illness. As an example, I moved from America and spent 6 months earlier this year living in Morocco, all without major complications. Once things are under control, he'll likely still be able to do a lot. Maybe he'll have to check with doctors and make more considerations than before, but I've found that with the right amount of preparation, most things are possible. And, on the really bright side, I can say that it keeps me from wasting my time on things that aren't truly important to me.

I'm sure I can think of plenty of other things, but those were the first off the top of my head. Hope it helps! And I hope that you get good news, whatever that might mean, about his health.

 

[Viola08]

Thank you so much for your help on this - starting to understand it a bit more.

He has to have an exam in 8 weeks' time to confirm whether or not it is Crohn's - he has had appendicitis and they weren't sure if the inflammation of the bowel and intestine they found was linked to this - as he had left the infection for a few weeks! He's recovering now and should be out of hospital in the next couple of days, then they will test him for Crohn's.

Really appreciate all the help - and glad to hear your stories and that you are able to live full and happy lives and manage your Crohn's - thanks all!