So it looks like my husband has crohn's

[mrswill]

Hi im Mrswill (kat),
My husband (Will) is very un well at the moment. his doctor suspects its crohn's. He started having symptoms roughly two years ago but has largely been ignored by doctors. its only now he is having a "flair up" that they have sat up and taken notice. The only reason we know what it is is because his mother also has Crohn's and is a fountain of knowledge treating hers solely with diet for the past 15 years with no bowl removal and no scary medication.

As someone who is not a Crohnie and is looking at spending the rest of my life with one i wanted to see and hear other peoples stories.
Are there any other Mr or Mrs of cronies who have advice?
Are there other people on here who have treated the crohn's with diet alone?
Whats the best advice you can give a newly suffering cronie?
Any advice would be welcome.

A bit of background
my husband is 24 very healthy diet mostly veggie. ex smoker not a big drinker fairly physically fit. Has been fine for most of the 10 years i have known him started with bleeding on and off about 2 years ago and now seems to be full blown.

 

[GutlessWonder86]

hi kat,

Before I got married, my husband, then finace', attended the local CCFA support group meetings to educate himself on what Crohn's is, how it's treated, when surgery is a last resort, etc. Plus he met other family members who had someone sick with Crohn's.

He also attended the local ostomy support group to educate himself in case I have a blockage, he'd know what to do.

Knowledge is power. The more you know, the easier it is to deal with Crohn's. This forum has several topics of interest you can search for here.

Yes, it may seem overwhelming, but just take it one step at a time. Feel free to PM me if you have any questions. My husband can answer them for you.

 

[Angrybird]

Hello and welcome to the forum

It's great to see that you have joined to educate yourself about this disease so you can support your fiancee, there is a lot of helpful info here so do have a good look around. Is he still under going testing or are you waiting for the appt to confirm a diagnosis? Everyone is different with what works for them treatment wise and some will be able to keep things settled diet wise but many do require meds and I would say that if meds are required that is still doesn't hurt to look at foods and perhaps keep a food diary so problem areas can still be pinpointed. Also to make sure that his vitamin levels are regularly checked as it is common with crohn's to have deficiencies in this area which can cause a whole host of other problems. We do also have a partner's, family and friends sub forum that you may also like to check out to have a chat with the folks here: http://www.crohnsforum.com/forumdisplay.php?f=90.

Please keep us updated on how things are going.

AB
xx

 

[Karen]

I am also a wife to a Crohnie ... So, I know what your going thru ... yes I agree with what Angrybird said ... A FOOD DIARY is very important thing to have ... My hubby still does it to this day ... even though it has been 7 years for him. So, I am here for you and once you do find your way around the forum and need a support group I have one called SPOUSES w/ Crohn's so do come and join us ... We are a small number but we are strong so do come and be with us ... Have a great day and keep your chin up !!!

 

[mrswill]

Angry bird im trying to get him to keep a food diary but as a man who loves food it just makes him upset at the thought of not being able to eat things he loves! Your right Wonder knowledge is important. We are still waiting for the colonoscapy but were nearly 100% its Crohns or ulcerative colitis and thankfully with his mother having Crohns there a lot of very available knowledge.
How long did you guys have to wait for your colonoscapy's ?(i don't think im spelling that right). How hard did you have to fight for your diagnosis and what impact has it had on your general lives? Im struggling atm with work understanding whats going on. Will is so unwell he can't get out of bed:yfaint: and has already been admitted to hospital and sent home again. Work want me in 40 hours a week and seem unwilling to let me take time off to care for him but he can't even stand for long enough to get something to eat. Has your husband/friends/ you in Karens case had this problem? Where do i stand in trying to look after him? SSoo many questions!!:sorry:

 

[Karen]

Kat ... That is why we are here to HELP OUT !!! As I had told you ... my hubby was told at the GI SPECIALIST OFFICE that he had Crohn's ... so he knew even before he had the colonospy { see after 7 years I cannot even spell it } anyway when they finally did that the day after he saw the GI SPECIALIST ... he knew for sure !!! So, it was like a DAY that he found out ... anyway I am here for you if you need to talk !!!!

 

[Angrybird]

For me I had to wait a couple of months for my scope but both my GP and GI doc were already convinced I had crohn's based on my symptoms and the fact I looked very ill (I had lost a lot of weight and looked quite skinny and pale). Work wise I could not advise as I was not with my husband when first diagnosed and he has not needed to take time off to look after me apart from a few days after my op and he used holiday for this.

 

[KayleighMeek]

Hello,
Sorry to hear that your husband is ill at the moment but its lovely to see that you are so supportive.
Have you asked your work about carers leave? They should have something set up to make sure you can take a certain amount of days off to help your husband.
I had only been with my partner a few months when I got very ill and was diagnosed. The best thing he ever did and still does for me is just to be there for support and to listen. I think I have had this disease since childhood as I always had problems but it suddenly got a lot worse, it took me around a year to get diagnosed but no one else in my family has crohn's.
Hope you get answers soon so your husband can start to get better x

 

[Ya noy]

My husband was diagnosed with chronic colitis, and never got more of a diagnosis than that. His mom had the same and recently died of stomach cancer, and crohns , UC and other related digestive disorders run in his family.

My husband was on various meds and hospitalized several times in the past, but he hasn't had any flares or problems now for years. We've become dietary fanatics, cook everything from scratch, including making our own kefir and other probiotic enriched foods, but diet doesn't work for everyone and actually, my husband was recently hospitalized with an allergic reaction to his heart meds, developing a skin condition called Stevens-Johnson syndrome, which is potentially fatal, and he also developed TENS, (toxic epidermal necrosis, meaning all his skin burnt off and died) which is even worse, but he actually recovered quickly and seems to be ok.

We grow, can, freeze our own veggies, buy organic, grass fed, free range meats, eggs, raw milk, etc. My husband wasn't that enthusiastic at first, but after my kefir provided better relief than his meds, he came on board. He now bakes all our bread, and instead of commercial yeast, he's even developed his own "starter" that he feeds and nurtures. He's really getting into probiotic cooking and is currently fermenting some sauerbraten.

We're not vegetarians, mainly paleos. Others with crohns report improvement by following the SCD (specific carbohydrate diet) or GAPS (gut and psychology syndrome) diet, and there's several others. Which is best depends on what food groups your husband's system tolerates best, although I don't believe there's definitive proof that diet necessarily even helps. There's also a number of supplements that many utilize. For additional info on supplements and diets, there's a sub-forum on this board.

 

[mrswill]

Thanks for sharing your story y a noy! Seems like its been a tough few years for your Mr! I think more research needs to be done into diet. Wills mum takes no medication at all for crohns and has been in remission for years. I think different diets for different people. Wills mum cant eat anything gluten or milk based and in the past few days Will has cut these things out too and does seem to be in a lot less pain. I think crohnies should try and put forward the diet idea to there doctors more. Im not saying no one should ever take meds tho. Diet is imporant for everyone weather they are ill or not. We cook from scratch amd eat mostly organic anyway so we have a good starting point. My main worry is we ar supposed to be going to the USA so will cam study at Berklee but the food is soo bad out there amd full of stiff bannrd in the uk and when we went over we found decent fresh produce really hard to buy amd very expensive...

 

[mrswill]

Ps sorry about the type o's im using a phone lol

 

[Ya noy]

Thanks for sharing your story y a noy! Seems like its been a tough few years for your Mr! I think more research needs to be done into diet. Wills mum takes no medication at all for crohns and has been in remission for years. I think different diets for different people. Wills mum cant eat anything gluten or milk based and in the past few days Will has cut these things out too and does seem to be in a lot less pain. I think crohnies should try and put forward the diet idea to there doctors more. Im not saying no one should ever take meds tho. Diet is imporant for everyone weather they are ill or not. We cook from scratch amd eat mostly organic anyway so we have a good starting point. My main worry is we ar supposed to be going to the USA so will cam study at Berklee but the food is soo bad out there amd full of stiff bannrd in the uk and when we went over we found decent fresh produce really hard to buy amd very expensive...

We live in the U.S., in The great Midwest of Chicagoland, and there's lots of organic farmers out here. I believe there's a good number in California as well, but yes, especially there, I would imagine it's more costly.

My husband tends to minimize and trivialize his condition, refusing to accept, oh, anything that contradicts what he wants to believe. he's been butting heads with his doctors on so many levels, I can't even keep up with it any longer. He is doing a lot better though. His skin's cleared up, his blood pressure is way down and all the results of the allergy testing that's now being conducted on him are basically indicating what we thought they would.

With everything else that's been going on, I was afraid it would trigger a flare, but hasn't yet. So far, so good.

I wish I had better advice, but I don't know enough and have been in a perpetual state of confusion lately, so I wish you and your husband all the best!