Husband has crohns

[kimbo]

hi there,my husband was told in 2009 that he has crohns.he was 22 years old.weve been 2geva since we were 15.it was such a shock as no one else had it in the family.its straining at times.since then weve tried to get on with life,got married & had our daughter who is nearly two.my husband didnt want to believe it for awhile that he had crohns & it was a very touchy subject.i still cant really talk to him about it.only wen he wants to.hes had on & off flare ups since then.he loves steriods as they make him feel normal again.we even get talking about having our 2nd baby,but as soon as he comes off them hes very tired,miserable & i seem to annoy him & dont mean too.hes currently just started azathioprine.anyone on these? do they work? would be lovely to hear from you all.i feel im on my own at times & cant help my husband.kind regards kim x

 

[acoop]

Hey kimbo, I was diagnosed with crohn's 6 years ago, and can I just say it's one crappy disease lol. I haven't actually heard of azathioprine, and I don't recall taking it, but I used to take 28 pills a day so I just knew em by colors. I can say that Remicade/Infliximab works, I've heard of people actually going into remission with it. I am not in remission but it's the only thing really keeping me in college. I think when people are first diagnosed with something like this it's just a shock and you feel embarassed, I wouldn't let my mom tell anyone when I was diagnosed. It took me until now to really become more open about it and accept it more. It's hard when you have to make so many changes, I won't even go on about the changes I've had to make and deal with haha. Sometimes the best thing you can do for someone when you feel like you can't help them, is to hug them, be close to them. Thats definitely the best thing, you feel like someone is there for you, and thats all I need sometimes, even if it doesn't take the pain away, it can warm a heart.

 

[kimbo]

thank you so much for your reply.im very greatful.i cant imagine what youve been through but only how it makes my hubby feel.hes looks very thin at times.it looks tough.i think your right with a hug.a hug can do alot.ive heard ppl who had flare ups & then never had them again & then others arent so lucky.we registered at a charity.im hoping to raise some money by baking & selling cakes.many thanks for your kindness.i hope u r remission very soon. x x

 

[Jer]

Azathioprine is the drug, goes by brand name Imuran and also Azasan .

You never know what's going to work. Everybodys disease reacts different. The doctors usually start you with milder meds and work their way up as meds don't work or stop working.
I hope your husband gets remission from it.


My 2cents as far as being a husband with Crohns. It can get on my nerves when my wife constantly asks how I am or how my stomach is. I know she's just trying to be a good wife and see how I feel, but its very easy for me to be short with her about it. When you feel like shit most of the time, it gets frusturating and hearing her ask the same question all the time can be irritating.

 

[acoop]

no problem, I try, I feel like I can't always help as much because I have never been in remission and I have had two major surgeries. It's sad but I am glad that I lost 7 pounds, I hope my doc looks at my chart and realizes that I'm not making my problems up. Heating pads def help with the pain, but I wouldn't tell your husband to use them excessively because I now have erythema ab igne on my tummy, aka toasted skin syndrome (totally a funny name for it). I hope your husband is in remission soon, no one needs to deal with that kind of pain.

 

[Jmrogers4]

My hubby has Crohn's as well, we started in pretty much the same boat as you, no one in the family with it, didn't even know what it was. Well that was 20 years ago. He was dx'd a few months after getting engaged. We will celebrate our 20th anniversary this year and the best advice I can give is just let him know you will be there when he needs you, follow his lead when he is grumpy and just wants to be left alone, tell him you are there if he needs anything and then go read a book or whatever.

I will tell you I can know tell how bad he is feeling by the level of grumpiness and will often say to him "wow, you gut must really be bothering you" which is also tells him that maybe he is taking it out on me a little too much after all we are people with feelings as well.

My hubby has been on aza for many years and I can tell you it was amazing the difference in how he felt after starting it, he was on Pentasa prior to that and as he said he never felt 100% the most he could achieve was 90%. It does take a while for it to truly start working, several months to achieve theraputic levels.

I have had to step in a few times and insist he see his GI as he also likes to pretend he does not have crohn's but I've been there through the hospital stays and know what happens if you ignore it.

We have two lovely boys (most of the time anyway, one is a teenager (13) with crohn's and the other a tween (11). Stay strong and just be there for him.

 

[kimbo]

wow what amazing replies.im very touched & relieved at the same time.ur kindness is much apprecuated.i think sometimes its just best to listen & hug one another as saying things can just make things worse.i guess in this kinda situ its goin to be hard either way.for ppl wiv crohns & the loved ones who try & understand.its amazing to hear that ppl have been 2geva for so long & go through it together.thankyou for letting me know about the meds.hubs was on pentasa & then was convinced he didnt need them anymore,i guess at the time he was in denile.now hes on aza med.its bin a month so far.think they said it takes 3 months to kick into your system.im so very gr8ful for your kindness & help.xx

 

[kimbo]

hi there,my husband came bk from wrk this morn. to tell me hes bin avin a flare up in the last week due our lifestyle change,regarding his job.it broke my heart hearing some of things he said.i listened to all ur comments yest & felt very gr8ful for ur support.they r very dark days wen it does happen.my hubs wants to speak to his specialist & get it sorted. thank you so much xxx

 

[ddm]

Hi there, I was diagnosed with Crohns when I was 19, that was 1971. I was on prednisilone for quite some time and then was eventually weaned off it. I went through life thinking all was OK, having the odd relapse, but nothing too terrible. My initial diagnosis showed that nearly all my intestinal tract was infected, from Throat to rectum, so no possibillity of any operation. In 2004 I moved to France and in 2007 I suffered one of my usual bad back attacks, this was so bad that I had to be rushed to hospital, and it was there that I was told this was due to a flare up of my Crohns, I was put on
200mg of prednisilone a day and over the next month this was dropped to 160mg, I was then given Immurol (azathioprine) 350mg a day and was told to reduce my prednisilone over a six month peiod as it takes six months for immurol to take effect, I have taken immurol for 5 year and have just come off it, now I only take Mésalazine 2400mg per day and 600 mg per day of a collesterol drug to help my liver reduce my transaminasses. I have just had my first calprotectine and the result is 44, which looks good and I will be 61 this year. I have had a really great life to date and expect it to continue, so just to let you know that even with very bad Crohns you can survive and have a normal life, apart from regular toilet visits, but you get used to that. When I take Prednisilone, unnoticed by myself, I am informed that I become very moody and depressive, Oh I have two children and three grandchildren, two ex wives and a wonderful partner for the las 20 years, also, believe it or not, I also have rectal collitis and I am drastically overweight, so keep your chins up, it does get better with time

 

[acoop]

aww im so sorry to hear that, I really hope that your husbands GI gives some helpful insight. I know mine hasn't for a while now, so I started my own research and joined this site. All I can say doctor wise, he has got to be his own advocate, when I finally started to get the hang of that, things got done. Is his pain located in a more specific area, and how would he describe the pains, liek crampy sharp stabbing..ect? I never asked this but has he had any surgeries. I had 2 and that's how we figure out that my crohns has now changed to the stricturing type of disease.

I wish you guys the best .

 

[kimbo]

hi there,sadly he dnt tell me where the pain is.he said to me this morn that when he gets stressed out the gases in his stomach start the flare up.he hasnt had surgery.he jus has the regular MRI scans to keep an eye on him.i was wondering does diet make a difference?

 

[kimbo]

im very inspired by your story (ddm) its very reasuring to hear youve come so far & got a wonderful family.parts of me feel relieved to hear these stories but at the same time i feel frustrated cuz my hubs pushes me away.i respect its tough & i cant imagine wat it must b like.i just want want to help.i sometimes feel ur left to deal wiv it on ur own.its like they say uve got this,off u go & live ur life.its like ur left in the dark.im very grateful for u all.im starting to feel less alone.thank you so much xx the hugs def work

 

[acoop]

For me diet makes a huge difference, I mean literally anything I eat or drink makes me sick, but I'd prob be in the hospital if I still ate meat, veggies, fruit, ect. Liquid diets here and there are usually easier on the stomach, tell him to keep a food diary. I hated when people told me to keep one, but it's easy to loose track of what you can and cant eat. I keep a mental one now because I cant eat much, I do keep a symptom diary. So, if anything new happens that I should discuss with my doc and I might forget, i write it in there. I don't know if part of the pain your husband is having is partly from contipation or anything like that, but walking joggin running or biking helps things move, and can help get painful gass and stuff out. I run everyday, and take a high dose of a laxative everyday, it's the only way I'll go. Stress definitely causes symptoms and flares, if he's open to it, suggest meditating or listening to calming music. It helps so much to keep you calm, it lifts the spirit and makes you feel more at ease and one with yourself, if you really get into it.

 

[Clash]

Hi, Kimbo welcome to the forum. Sorry to hear your husband is having a flare right now. My son, tends to become evasive and distant when he is in a flare too. I have to get really creative at keeping the communications lines open with him, he is 16, so being a teen plays a role too, I suppose.

I know at times I struggle with him pushing me away when he is having problems and I bounce between giving space and giving support. It is a fine line to walk and a constant learning process. I do remind him though that I will support him in whatever way he needs but I need him to tell me what those areas are.

I do hope that your husband improves soon and you are able to find a way to open communication lines.

As to your question about diet we do have a Diet Forum(<---click here) you may want to browse through.