• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Spouses of Crohnies Support Group

Karen

FRIEND 4 1 & ALL
:hug: Sorry that I have NOT been around much but things here are VERY HARD for us right now .. My daughter is going thru somethings right now and I will be wanting to be there for her so ... if you need something just PM ME and I will do my best to get back to U when I get back ... It should be just a few days that I am gone so see you soon !! Also I am glad that I have been able to give some of you HOPE with starting this group !! So, take care and I shall be back soon !!

:hug: :hug: :hug: :hug:
 
Hi all .. just wanted to introduce myself to this group .. i wrote another intro a few days ago and when i went to post it, it somehow disappeared lol .. i just didn't have the heart to re-write it at the time :) :voodoo:

i've been with my hubby over 3 years now, it was a long distance thing until he moved in with me just over a year ago .. he was diagnosed with crohns in '92, had a resection in "99 .. just started remicade on Sept 7th 2013

my hubby rarely complains and like stephensgirl's finace he is pretty tight lipped about everything .. i usually have to guess when he is having a bad time, but its not rocket science to notice when he has increased time in the bathroom, major bloating and is a total cranky pants .. :tongue: he has beautiful pale blue eyes and they grow even paler when he's unwell .... :(

sometimes i wish he would be more forthcoming about how he feels, and talk a little more with me about what he's going through because our relationship is fairly new and we've only been living together just over a year so sometimes i wonder and worry if his moodiness is related to his crohns or to "US" know what i mean ?? ................

i can only imagine what he went through when we first started dating .. he would come and stay for weekends and never told me about his crohns .. how on earth did he hold all that gas in !!!! lol ... when i found out that he was practically making himself sick by not "passing gas" infront of me i rattled his leg one night while we were cuddling and "it was on" after that :rof:
(i'm in no means making fun of the pains they go through with gas but you gotta laugh at stuff right??!!)

i'm still trying to figure out his "trigger" foods (as he says, basically everything) and that of course doesn't help much .. i've got an ap on my iPhone that helps to track food and how he feels but he resents me asking about all he's eaten through the day "sigh" .. so that only lasted about a week before i stopped ..

i'm really hoping that the Remicade will help get him into remission and once he is feeling better i can maybe try again to figure out a healthy food diet for him ..

anyway, thanx for reading and I'm looking forward to getting and giving some support!! :)
 
Hi Summerstorm. Welcome to the forum. If Doug (my hubby) reads this (he is also a forum member), I'm in trouble because he is also a very private person. I just have to tell you something funny, though. Speaking of holding gas in, I always tell Doug that I can tell the second he goes to sleep, because that is when the gas comes out. Poor guy. I think he has tried to control it for so long now, he doesn't even know He is doing it.
in regard to helping them with what they eat, I have learned that their needs, whether physical, or emotional, or both, change constantly, so what they say they can't eat one day, they want another. it also stinks that the diets that are best for most people are not the best for those with an IBD, ie high fiber diets. I do know the things that are most irritating to cronies tummies are things like fibrous fruits and vegetables, especially things like the skins of apples or potatoes, and seeds in things like raspberry jam, tomatoes, as well as onions. Rice is something that most people can tolerate better than other foods, which seems counterintuitive, but had long been known to be mild for the digestion. I think for those who have major illness, all we can do is let them choose how to deal with their body, but support them emotionally and treat them as normally as we can because they get enough reminders they have an illness. And, of course, let them know we have a shoulder if they ever need to lean on it. and do what we can when we know they are not feeling well to make things easier. This is a hard one for me because I have enough health problems of my own, and it gets hard when neither one of us are up to cooking, etc.
We all wish you well though, and I wish all of you well. sometimes I think one of the hardest roles is that if a caretaker, because we feel so helpless. hugs to all. :ghug:
 
I think for those who have major illness, all we can do is let them choose how to deal with their body, but support them emotionally and treat them as normally as we can because they get enough reminders they have an illness. And, of course, let them know we have a shoulder if they ever need to lean on it. and do what we can when we know they are not feeling well to make things easier.


thank you SandyUte for those words !! they really made me sit back and think and you are so right!!! .. i'm so glad you said them!

I'm a "fixer", thats just my personality .. and sometimes i jump in and try too hard to "help" .. when i first knew about his illness i scoured the internet reading up on everything ... i ordered on line CD's about crohns, i found cook books, i downloaded recipes, i visited various sites ....... lol i felt it was "us" against "it" .... and it is to a certain degree .. BUT i probably drove him crazy with all my suggestions, new ideas and "help" :eek2: :) .. after all he's had the disease since "92 and i'm just a newbee :)

ultimately you are right and he is the one with the disease and i need to step back at times and let him deal with it in his own way .. i will keep that in mind for sure because i know i maybe bug him about things he should and should not be eating ...... :ybatty:

i have however found some good things that have helped him tremendously and he is grateful that i made him try them :)

i found that turmeric helps to calm his tummy (also fennel and ginger) (probably you all know that) .. he doesn't necessarily like to have them in his food and u can't always put them in food so i decided to try and make my own pill forms ... i bought a machine for making pills and i now do a combination of the 3 powders and fill empty capsules for him .. he takes them with meals and it really has helped !!! he swears by them .. says he notices a difference on how he is feeling (and gas) on the days that he forgets to take them .. we spoke with his doc and he says he can't see any problems with him taking them and if it helps by all means go for it :)

SandyUte, thanx for the laugh, your hubby and i are pretty similar ... as soon as i relax and fall asleep i have the same issue, sometimes i even wake myself up lol .. its for all of us "gas imploders" who will not let it out through the day .. its gotta come out sometime lol :ylol2:
 
This is my first time posting on a forum, ever...so I have no idea how this works. But, I came in search of something exactly like this. My husband was diagnosed with Crohn's in 2010 after a couple years of symptoms. He is currently taking Humira and has not seen remission. We have an appointment coming up to have some genetic testing done to see if I am a carrier of Crohn's. It's a concern because my maternal grandmother was diagnosed with it right before she died of liver cancer. With the pain and suffering that my husband has had to endure, he knows that he does not want to have biological children if I'm a carrier. I can't blame him for that, however I have wanted to carry my own babies since I can remember. Has anyone else been in this situation? I love him more than my desire to have babies, but advice is needed, as I feel very alone in this.
 

Karen

FRIEND 4 1 & ALL
:hug: please reply to this ladies and gents ... Who in the family is the one with the Crohn's { yourself or husband or other family member member } with me it is my ~ hubby :kiss:
 
my hubby is the one with crohns ..

MLGKU:

my hubby has 3 biological children from his previous marriage .. they are 27, 22, and 18 .. so far they have shown no signs of having the disease .. i'm unsure of his ex-wife's state of health but i know that she doesn't have the disease (whether or not she is a carrier i dont know) ..

does anyone know what the chances are of having a child with crohns if both parents carry the gene?
 
My boyfriend of 3 years got diagnosed with Crohn's Disease in Feb of last year. He has been to see so many doctors in Las Vegas & he can't seem to find someone here who will assist him and sit down with him and discuss options for treatment like diet paired with pills. They just want to shove meds at him and send him home for 2 months at a time. It has become a time where I feel like I need to take charge! He isn't getting any relief or help and I am so sad to watch him be in pain all the time. We fight sometimes because he says I nag about going to the doctors all the time and I know he is frustrated too and in pain. I don't know what to do and I feel like the more time we let go by the worse off he is getting, but we don't know where to turn for help. This disease is causing a huge issue with our lives and I want to help. In the past month he has had more bowel movements and more pain and it seems to us nothing we have tried so far is working. Someone please help or tell me you have been here before? We don't know where to go from here and need a GOOD doctor!
 
ohh boy i know that feeling, the docs make the diagnosis and send you home with the meds, the meds make things worse and no one seems to listen. I dont really have any wonderful advice just honesty and I hope that ur man gets some relief soon. we are 1 year into a diagnosis with no relief and a few hospital stays, we now dont even share a bed as hubby needs to sleep on his back....usually with his mouth wide open and snoring...and im a light sleeper!!!! not very romantic but sleep is way to important especially with the meds making him so exhausted. good luck i do think u have to be mighty patient when a loved one has Crohns and thankfully this forum is great for letting u express how u feel. xxxx
 
I can't thank you all enough for your encouraging words. It makes me feel better knowing others are going through the same struggles. I know it sounds silly- but it helps keep me sane!! :) :)
 

Karen

FRIEND 4 1 & ALL
Good Morning from Ohio ... Just wanted to STOP in and say HELLO and see how everyone is doing ? Me it's been a busy time here for me. With my daughter working almost every day & that leaves me to do things around the house w/out her I am not here as much so today I am taking time for me and going to visit a friend and then run some errands so I wanted 2 stop and say hello.

And I also wanted to take time time to say ...



To all who have come to join us here !! And, so here in a few days I will share a update of how things look here in our group so be sure to check back in and say hello !! Well it is time for me to head off so see you all soon again !!
 
I can't thank you all enough for your encouraging words. It makes me feel better knowing others are going through the same struggles. I know it sounds silly- but it helps keep me sane!! :) :)
thauck:

i feel your pain and frustration .. its hard to watch someone you love suffer so much and not be able to do anything to make it easier for them ..

i added a food tracker application to my iPhone specifically designed for crohns and tried to keep track of my hubbies food intake to see if we could pin point trigger foods as it is so hard to actually figure out what foods bother him and what do not .. i didn't have much luck with this as my hubby started to resent me always asking him what he ate through the day (he is not in remission and understandably a little cranky at times) .. but the doctor has recommended keeping a food log (when the recommendation comes from authority he is more apt to listen lol) so i am going to approach this with him again when he is feeling a little better (he just started a drug called Remicade and there has been a little improvement in how he feels) ..

if your hubby will cooperate, pin pointing trigger foods and avoiding them is a huge help .. my hubbies doc recommended a gluten free (or gluten reduced) diet .. my hubby loves his lunch sandwiches and crackers and pretzels etc ... and it was a real eye opener to see how much wheat etc was actually in his diet .. maybe try to cut down on gluten in your hubby's diet .. i have just started to look into this so i can't tell you how its working but we are going to try this idea and see if it helps him :)

i can honestly say i sometimes get a little frustrated with him because i try so hard to make meals and send him lunches that are crohns friendly and then when he finally feels better he tends to go back to his old habits of eating food that he loves but he knows triggers him and then we have to start all over again trying to calm the beast .. i try to understand his issues of wanting to eat what he wants when he feels good and in a way yes he is only hurting himself BUT it also does hurt "us" because he starts to not feel well and then he's cranky and tired and unsociable and it takes so long to get him feeling good again ... i suffer too ... does this sound a little selfish on my part?? maybe .. but when he goes off the rails we both go off, know what i mean? ..

as i re-read that last comment i do feel selfish saying it .. because it shouldn't be about me .. but forgive me cause this is a forum for us spouses and i just needed a vent ... :eek: there i'm good now .. thanx for reading
 
Thank you for creating this group Karen. My wife was diagnosed two years ago with Crohn's. I have felt in the dark and been unable to help her. I hope to change that...

Cheers:)
 

Karen

FRIEND 4 1 & ALL
Thank you for creating this group Karen. My wife was diagnosed two years ago with Crohn's. I have felt in the dark and been unable to help her. I hope to change that... Cheers:)

Your most welcome sir ... I am glad to see that some MEN are STEPPING UP and coming and joining us here ... So, I'm here for you as well as the other members and so feel free to send on a request or anything your needing help with and I will do what I can ... so once again WELCOME ABOARD !!!
 
My boyfriend has had Crohn's for 21 years and just finally got approval for a disability pension after fighting for the last 5 years and they told him he would need to revisit in 3 years as according to them you can outgrow it. I laughed at first when he told me but it also made me very angry that people who are dealing with disabled persons has no clue about such a disease and can make such a stupid comment. He has some very good days and some definite bad days with bloating and lesions. The poor man practically lives in the bathroom some days. 10 years ago he had surgery and they removed a lot and I mean a lot he wishes it had been less. I can't do a whole lot for him but what I do do is listen when he needs to vent and I rub in creams and give massages when needed. He also suffers bad back acne from sweating so much as a side effect to his medication so I make sure to help keep his back as clear as possible. We as parners and spouses of those with Crohn's might not be able to do a lot but we can certainly be there in any way they need us and I am thankful for this forum and all the support we get here.
 
Stephensgirl thank you.
You reminded me what this is all about. You sound like a loving supportive wife and I need to try and be more like you, for my wife.
Cheers
 
I am trying to support my brother's family. His wife is suffering from Crohn's disease and living with it. So this forum is really helpful. Thank you for sharing tips.
 

Karen

FRIEND 4 1 & ALL
Welcome Aboard Armen ... Good to have you here and you will find lots of support here with us ... I am trying to check in with the group every few days so take care and make yourself at home !!

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Everyone here seems so focused on being the support, but who is supporting you? I am really struggling right now. my husband was diagnosed about 8 years ago and we are going through the worst flare up he has ever had. To top it of we are expecting our first child together. He has been in and out of the hospital for the first time ever, he has lots of anxiety do to the disease and the steriods he is on. Through all the pain he works full time and overtime to provide while I work towards a degree i nursing. I do my best to take care of home, our 15 yr old son, two dogs, and make sure he is good with doctors appointments, medications, and just over all emotional support. Lately he is very distant, barely touches me. He comes home from work sits in front of the tv. The other day I tried to talk to him about the baby and how I was feeling a little down and he completley lost it. He even said in anger " F you and the baby. While I understand that he is going through a tough time and the medications can make it difficult to control emotion I am having a difficult time moving past this. I could really use some words of encouragement. I feel like I am doing all I can to be there for him but the pregnancy has just been tough to go through basically alone. :( please help! :sign0085:
 
Mrs.A
I feel your pain sometimes as the supporter you yourself need some support. I have been through periods of severe flare ups with Stephen and he has said a few nasty things nothing to serious but he will also not want to discuss how he is feeling or tell me exactly what is happening with him at that time. That can be very frustrating I can't imagine being pregnant while he was going through a flare. We are here for you. We can listen, offer advice, or just give you a hug and you can be sure you are getting a very big hug from this Canadian girl right now. As for advice you are just going to need to take 1 day at a time and stick with venting to us and sharing your feelings with us. This will pass and I'm sure he will feel terrible about his reaction to your feelings but flares can definitely make someone temperamental just like your pregnancy mood swings. I can also help there as I have 2 kids and have raised foster kids and several nieces and nephews. I know all the ups and downs of pregnancy so feel free to complain about all the swelling, cramping and the emotional rollercoaster that you want to share. You can even PM me if you like. Take care of yourself. Giving all the love and support I can!!!
 
Predisolone could even make Ghandi into a teenage hulk. However, I found that I had to call Craig on it for him to realise what he was saying even when he is in the hospital.

But that is just how we are as a couple. Oh Hun it is hard when they are being such a twonk. Lots of positivity your way.
 
Wow, Mrs A - strong wishes of loving kindness coming your way!!! My husband and I have been married 17 years. We started dating while I was in graduate school. He was born premature, so had asthma, allergies, etc. as a child, and started smoking when he has 12!!! I told him I wasn't going to marry him unless he stopped smoking, because I didn't want to be a widow at age 52. He did stop smoking. He tried to stop the day of our wedding, but we had a small wedding and the reception was in a sports bar !! so I said, please smoke and enjoy today and you can stop tomorrow! And he did!

But, I got pregnant with our daughter 3 months later. When I was 8 months pregnant, he started having trouble with his back. He has had many many problems since then - 2 neck surgeries, 3 sinus surgeries, kidney stones, pleurisy that lasted 6 months, 2 back surgeries, I don't know what else. He still has asthma and severe allergies - he rarely (if ever) feels good, and that is him talking, not me. He was diagnosed with Crohn's last May, but had been having difficulty for at least a year before that. He puts up with so much, I know he was in severe pain for a long time before they diagnosed it, just because he is so used to putting up with physical discomfort. Poor guy.

Anyway, we had significant marriage problems about 10 years ago, and both of us learned to work on having a positive attitude and we turned our marriage around. BUT, as Lozzie said, prednizone can make anyone into an ogre. And that doesn't even take into account what feeling miserable and being worried about your future can do!! I know you have so much on your plate right now - being in school, being pregnant, and putting up with a miserable grouch. Glad you found this support group - hope you have other support people in your life, too, though I think it can be difficult as a woman with so much responsibility to find real time to connect with real people!!

If I can do it, so can you...I like the title of the book I saw someone on this site has - this is my first day on this site, and I can't find who it was now... but i think it was "You are stronger than you think." I guess we all are.

Glad to have this thread. I am exhausted now - but I do feel better. Thanks to all of you for being here.

Jeanine :hug:
 

Karen

FRIEND 4 1 & ALL


I am so VERY HAPPY HAPPY HAPPY { yes a quote from Duck Dynasty } to see our little support group GROW ... so please pass the word around and so if anyone is wanting a friend feel free to pass one along ... So, I am here to wish each of you a blessed ~ week ahead ... sending you all lots of prayers and blessings !!

So welcome to all those NEW MEMBERS that have come aboard !! As I said we are a very supportive group here so let us all be there for each other !!

:ghug: :ghug: :ghug: :ghug: :ghug:
 
I could really use some words of encouragement. I feel like I am doing all I can to be there for him but the pregnancy has just been tough to go through basically alone. :( please help! :sign0085:
Best thoughts to you Mrs. A, that sounds very tough. Of course, you have this forum for words of encouragement.

You might also see if there is some live and in-person help in your town. Even if there isn't a support group of spouses of Crohnies, there might be some general support groups for caregivers and similar. You might ask your doctor or his about it.

There may also be a local chapter of the Crohns & Colitis foundation that could help.

Best of luck.
 

Karen

FRIEND 4 1 & ALL


I am HERE to WISH each and everyone A HAPPY THANKSGIVING ... I am sure that it will be a little early but I'm going 2 VERY BUSY this next week so I wanted 2 get this up before I forgot ... so wishing you all a great day w/ your families and loved ones. So, be sure to come back and share with us how your day went !! So, till then take care and see you soon !!


:ghug: :ghug:
 
Hello :)

I am here for help supporting my husband. He has been suffering since he was 19 and has never really had a grasp on the condition. Emergency surgery has come and gone and i now need to know how to help him as much as possible. He is suffering from depression and pain and isn't well enough to help himself. So im going to do everything i can to be there for him. I look forward to getting support from this group. We are still young and have our whole lives ahead. Married for almost 5 years and in our late 20's...we still have a lot of living to do and i want to do it as healthy as possible.
 

Karen

FRIEND 4 1 & ALL
sjm18 ... Welcome Aboard and thanks for coming into our little corner of the FORUM ... I am sure that you will get lots of tips and lots of support here so do come back and share with us from time to time !!
 
I just wanted to say hey. I joined the forum because I'm actually the person with crohns but I thought that if I joined this thread my husband might be willing to read and speak with others who are in his situation. I know he feels helpless and that's hard for a man. Sometimes I feel responsible for him being depressed which stresses me out more and makes everything worse. Just as I need support he does too. I just don't know what to do for him to make him feel better. He's never seen anyone as sick as I am a she doesn't know how to react or treat me.
 

Karen

FRIEND 4 1 & ALL
Welcome Aboard Megan !! It is good to see you here !! I am sure that you will find lots of LOVE & SUPPORT here in the group. If your needing someone to talk with I'm a CLICK AWAY ... I might not be here that much but I do stop in from time to time to welcome new members to the group ... so have a great time here and be careful ~ over Thanksgiving !!

:ghug: :ghug: :ghug:
 

Karen

FRIEND 4 1 & ALL
:ghug: Monday is the 8 year Crohnnie Anniversary for my husband ... It may not show on my ticker ... but today 8 years ago he went into the HOSPITAL and found out that he has Crohns & so he is doing much better compared to back then ... Here is a few things ...

* Weight ... 2005 = 165 / 2013 = 210
* Eating ... Pretty much just soup or broth / today - cookies and other stuff
* Feeling ... 2005 = crappy / 2013 = has his good and bad days

So, I am praying that I never have to see him go thru all that again ... I LOVE him very much and I want to keep him around for as long as I can !!
 
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Hi everyone,
I'm joining to figure out how to support my husband with proper expectations. He was diagnosed with crohns 6 years ago. He has never held a regular job in our 10.5 yrs of marriage. I've provided for us and our 3 kids for the entire time. He is going through a flare up right now that seems to have been going on for a year. He pretty much lays in bed if he is not dealing with the crohns-- in the bathroom. He has never been one to take initiative in helping around the house, but Is this normal for folks with crohns?

I don't want to ask him to help with the kids or the house if it is normal for someone with a flare up to just do nothing for most of the day.

Should I expect him to do some things? This has been going on for @ least 6 months and I'm thinking of putting the kids in an aftercare program bc he stays in bed much of the time.
 
Hi Supporter2013.

I don't have an easy answer - everyones reaction to Crohn's is different. Some people really have a huge loss of energy, some people find it mentally draining, others lead pretty normal lives. Maybe this is something you both should discuss with his doctor. Maybe there are some treatments that would help him (and you). Good luck.
 
I can't take it anymore. Dose someone with crohns lose all desire for sex? When me and my wife reunited 3 years ago she didn't have crohns and we had sex 3 times a day everyday for a year and a half. We went threw a lot of s--t financially and then she got sick with crohns. her sex drive went down a lot. At this point we didn't know it was crohns yet but then a while later she got admitted into the emergency room and got diagnosed. She had 1' of lower intestine removed then and came home, She's very sick and on a lot of meds. We been going threw a lot lately in every way too so I don't know if its the crowns or just our relationship, but now we went from having sex 3 times a day, to 3 times a week, to 3 times a month, to 1 time a month. Sometimes not even that. Is this normal? She had her resection in may and now its just about january.
 
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Plus she's really agrivated with me. Its hard to talk to her about things without it turning into an argument. She says its because of the way I speak to her but I don't think it is. I think she's just done with me. I think she thought I was something else and now that she got to know me, she don't want me anymore. Anyhow , thats the way I feel. I was just wondering how much sex crohns sufferers have. Once a month? twice? Once a week? I hope Im not being too personal but I really need to know. Its not for the sex, but for what the sex means.
 
Oh yea, Im her caretaker too. I care for her every day. Cooking, shopping, Laundry, everything. I love her undyingly and truly. I want her to have desire for me, but I don't feel it. Somebody help me.
 
Hi!

I'm new to this forum :) and happy to make my first post here. My boyfriend and I met in highschool when I was in grade ten and he was in grade 11 and we dated for a year. Back then he wasn't diagnosed with Crohn's disease but we were both aware he had stomach pains. When he first told me about his pains I immdeniently encouraged him to go see doctors and he told me it was nothing and he had been to the doctors/hospital many times
And told him it wasn't anything serious. Things only got worse with his stomach- some days were good and some days I would be with him and I couldn't even touch him because he was in pain and we had no idea why. Eventually he did listen to me and went to see specialists to see what was wrong but kept being misdiagnosed. Although I loved him dearly our relationship was very stressful, not being able to go out to places to eat because he was always changing his diet to make his stomach feel better, him feeling sick a lot of the time when we were together and not being able to put much effort into us.. We consantly fought and I felt neglected and unnappreciated by him all the time as I was constantly trying to be there for him through everything he was going through but when I needed support he had no energy to give. Our relationship ended a little after we had our 1 year anniversary.

The months without him were hard and depressing and I reached out to him many times to try to at least be friends but each time ended regretably. 8 months of trying to move on passed and eventually we got back into contact with each other and decided to try to be friends. When I met up with him we caught up and told each other everything and how we missed each other...and I also found out he had been diagnosed with Crohn's disease. He told me after we had broken up his stomach felt fine for a few weeks but after that he was constantly going to the hospital and being sent home, the doctors continued to tell him it was nothing until he was at his worst state did they diagnose him with crohns. He told me he was surprised I still wanted anything to do with him after how he treated me before and I told him it didn't matter now. After hanging out a few times he confessed he still had feelings for me and wished he could take everything he did wrong back and I told him I forgave him and even though he had Crohn's disease it didn't matter
To me because I had loved him before he was diagnosed and having something like that doesn't change how I feel. We got back togegher and our relationship is completely different. I'm still trying to be as supportive as I can but sometimes it's hard. I'm in grade 12 now and I know I have a long and hard road ahead supporting the person I love with crohns. But I love him and I can only hope he'll find something that works for him to make him feel better <3
 
SofaKingConfused,
I have been thinking of your post for the past couple of days and finally decided to answer your question.
Your wife has a life time disease now. She has and will experience pain, nausea, moodiness, sleeplessness, more pain, and is probably not concerned at this time about how many times you both have relations. The medications that she is on or will be on can make a grown man cry. We are fighting an incurable disease that is relentless in hurting us.
Crohn's is a disease that makes you feel alone, isolated from family and friends, and at a loss with the medical community. We ask for support and understanding from our spouses in hopes that someday we will go into a remission and start leading a semi-normal life.
We all appreciate the household and monetary support that you are giving your wife and now hope that you can extend that support to her mental health. A kind word. A small gift. Holding her hand. Telling her you love her. Try your best.
 
SofaKingConfused,
I have been thinking of your post for the past couple of days and finally decided to answer your question.
Your wife has a life time disease now. She has and will experience pain, nausea, moodiness, sleeplessness, more pain, and is probably not concerned at this time about how many times you both have relations. The medications that she is on or will be on can make a grown man cry. We are fighting an incurable disease that is relentless in hurting us.
Crohn's is a disease that makes you feel alone, isolated from family and friends, and at a loss with the medical community. We ask for support and understanding from our spouses in hopes that someday we will go into a remission and start leading a semi-normal life.
We all appreciate the household and monetary support that you are giving your wife and now hope that you can extend that support to her mental health. A kind word. A small gift. Holding her hand. Telling her you love her. Try your best.
Thanks for the reply Mike! Im aware of everything you said. And I barley leave the room without telling her I love her. I love holding her hand and I do so as often as I can. I can't go out to the store without getting her favorite candies for her. And my words are as kind as kind can be. Im sorry if I was being too personal but I was just looking for support. I give her all the support I can and as a family member of a crohns sufferer I came HERE for some. Sorry if I seem too forward but stats are good aren't they? Im only looking for answers and support.
 
Hello everyone, quick intro my hubby has had Crohn's for 24 years now as you know it's a every day battle. Thanks for creating this group.
 
Is it normal for her to be incoherent? I left the house with her screaming and came back to her on the bedroom floor. I just 911ed her day before yesterday. They sent her home normal. I got some friends to come over to look at her. One of them has a spouse with crohns. We got her to bed an made her eggs. Seems fine now. I just got done moving all our s--t into our new place by myself. I got disabilities too and it takes me a great deal of effort. I woke this morning to her yelling bout we got no sugar an her slippers are gone. She accused the person we were stain with of given us wet blankets and kikkin us out her house. We been on their liven room for over a month an they found us this new place an vouched for us here. Now we can have our own room an wind up owning the place in a small amount of time. I feel like nothing I do is good enough. She even resented our friends for getting this place for us so we can move off their liven room floor. Oh well. Now she's sleeping. Now I can put all the s--t away that I moved in. .
 
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SofaKingConfused-
My husband is now experiencing what others call Brain Fog- short term memory loss, searching for words, omitting sentences in a paragraph, confusion with tasks that should be 2nd nature, etc. His dr. said crohns and the brain are not connected, it is most likely related to electrolytes and nutrition...I disagree.
And he does get grumpy when he hurts so badly. But feels badly for being that way once he feels better.
It's a tough road for everyone. We try to cherish the good days. I try to be patient during the tough times. I'm sorry you both are having to deal with this also.
 
Well I'm going to sound like an awful person, but I am just truly tired of being married to someone with Crohn's!! My husband and I have been married for about 5 years (together 7 years) and I just feel so alone sometimes. I know I'm not the one physically dealing with this awful disease but it really affects our marriage in so many ways...as you all know.... Does anyone else just feel like giving up at times? I love my husband with all my heart and I do all I can for him but sometimes I feel at my wits end. Does anyone else feel this way?
 
Andrea,

I feel the same way with my boyfriend sometimes. It's really hard and as much as I wish it didn't it affects our relationship in a bad way. When he feels sick we have to cancel plans... Even times like Christmas dinner with the family or trips we looked forward to. Sometimes I get so tired of it when he gets mad at me for trying to be supportive because I "don't understand" or when I try to be positive about the entire thing..
At the same time... he realizes the way he is and asks we why I'm still with him and wants me to break up with him and be with someone normal. Being with someone who has crohns isn't easy at all but the moments when they're feeling good they really want to show you they appreciate everything and everyone who stayed by them :)
 
Hi everyone, my name is Katie and although I've been reading these forums and getting information for quite a while, this is my first post. My partner has suffered from undiagnosed stomach problems his entire life, and has recently been given the official diagnosis of Crohn's. He's been in a bad flareup for over 6 months now, and I'm hoping the GI specialist will prescribe something when we go next week. We've been given a lot of hope reading about some of the medications that members have been taken.

I have to say, our lives have drastically changed with this flare. We've only been together for a year, and until this summer, I didn't know what this disease was, or how it could effect him. The changes are dramatic, as I'm sure you all know. It's been very hard for me to adjust, but it's getting better. The cancelled plans and really the lack of being able to plan for much of anything are very frustrating, as are the days where he sleeps 24/7, and the incredible drop in energy and libido.

The hardest thing now, for me, is that friends and family don't really seem to "get it". I end up attending parties and events alone, and usually have to explain last minute that today ended up being a bad day for him, and he couldn't come. I think it's hard to understand unless someone close to you has the disease.

Some days I'll get frustrated or sad, and I'll wish that I had a "normal" partner, one that's healthy... but really, what's that guarantee? I've had plenty of healthy boyfriends, and even a fiancee, but none of them have loved me, accepted me, and supported me like my partner now does.. not even close. One good day with him is worth 100 healthy days with one of those jerks from the past.. reminding myself of that helps me put this disease in perspective, especially when I'm feeling lonely or sorry for both of us. :)

Anyways, I'm happy to be a part of this group, and look forward to conversing with you all!
 
Thanks for alla this. Specially ICU. I been having a really hard time. Thing have gotten a bit better tho. We moved to a roomier place. Other stuff too. She's gotten better too. Crohns wize. I thank God for her. And I kiss the ground she walks on. She lives with this everyday. She's going threw all this under soma the worst circumstances possible. The stress is incredible(but things are changing for the better)and I know stress is bad for her. All I can say to anyone going threw soma the bad things associated with crowns is that we gotta get threw the bad times so that we can appreciate the good times, because the good times are real good. Its all soooo worth it guys. Thanks for the support ICU. And hang in there Andrea. Anyone going threw soma this s--t, Hang in there.
 
Hello everyone ~ I am Chinese, my husband is Crohn's. Crohn's disease is not uncommon in China, we do not know the cause of illness. I am glad to find this organization.
Since 2012 confirmed so far, has not alleviated inflammation, because Medicare and commercial insurance does not take care of Crohn's disease, this year we spent a lot of renminbi, let me worry about the future life, and this disease so that my husband's anxiety and irritability, let prednisone his appetite is very strong. Weight did not increase very worried. Also worried about the future.
:ghug:
 
My wife has Crohn's. It changed everything for us. Fortunately, her case is relatively mild and she manages well. Using diet and exercise she is able to live medication free most of the time.

However, we don't have kids. We haven't prevented for years and can't say for sure, but we figure her Crohn's is preventing her from getting pregnant. We are both in our early 30s and many people tell us that we should have kids. They don't understand and assume that we are trying not have kids. Honestly, I get really upset when they directly or subtly suggest we have kids.

I think about food totally differently now. Even when I'm traveling without my wife I view all foods through the filter of: "is this safe for Megan?" Anytime we are invited to someone's house, I make sure to let the hostess know my wife's dietary needs. We are in this together, in sickness and in, health. I sure love my bride!!

Also, I'm really proud of her, because of how hard she works. She has slowly gotten over her fear of talking about her disease and she now has a blog. On her site, FollowMeg.com, she talks about health and wellness, and has many healthy recipes. I know Crohn's is different for everyone, yet I'm still really impressed how she copes.

 
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Hello. It is not my spouse (yet ;)) but my very lovely boyfriend / best friend. We have been a couple for about 4 months, but we have known each other for a year. When we met he had already been diagnosed for years and been through a lot of things.

I am here at this forum because I wish to know somebody else, both somebody with the diagnose and somebody who is close to somebody with Crohns
 
After a little over a year, we were finally able to get in to see a specialist @ UCSF. A few tests are to be done, and a change in medication as well. My hubby is finally hopeful about managing this better!:dusty:as am I.

On another note~
I am wondering why, oh why, does anyone and everyone feel like they can share so freely about their poop, and their families poop, and there second cousin twice removed's poop? Yes he has Crohn's. Yes I deal with it every day too. Yes we need to be aware of those type of issues. But one can get tired of the topic! And during a meal?! And graphic details, as if its live?! Spare me!!
I have tried subtle ways and direct ways of requesting a topic change to no avail. Any suggestions?...:ybatty:
 

dave13

Forum Monitor
Location
Maine
After a little over a year, we were finally able to get in to see a specialist @ UCSF. A few tests are to be done, and a change in medication as well. My hubby is finally hopeful about managing this better!:dusty:as am I.

On another note~
I am wondering why, oh why, does anyone and everyone feel like they can share so freely about their poop, and their families poop, and there second cousin twice removed's poop? Yes he has Crohn's. Yes I deal with it every day too. Yes we need to be aware of those type of issues. But one can get tired of the topic! And during a meal?! And graphic details, as if its live?! Spare me!!
I have tried subtle ways and direct ways of requesting a topic change to no avail. Any suggestions?...:ybatty:
wow,my wife and I were just talking about this very thing.I have crohn's and really try to listen to myself and not make her eyes glaze over with IBD talk.She is awesome and has been very supportive during surgeries and everything that goes with it.I was saying to my wife 'you gotta love a web site where you can talk so freely about bowel movements and gas'...not at the dinner table of course. :poo:
 
Yes, THIS is the place to talk openly. And to get some great help!! I am thankful for the wealth of true information available here 👍
Now I just need to figure out a simple brief answer for the diarrhea of the mouth diners...
 
Hello from London
My husband has Crohn's discease diagnosed November 2012 by colonoscopy biopsy,started on steriods that same day.
he was mis diagnosed as having irritable bowel by gp few years before that..
I to have ill health lupus,mctd,myositis etc.
so diffficult now both have health challenges.
he is on humira after bad allergic reaction to azathioprine he ended up in ER for peunmoni and back,body spasms was also reaction to drug but steriods masked it.
They then gave him azathioprine again not knowing he had reaction this time was clearer stopped imediatley had call dr out hours.
got him in for urgent review by which time 1st mir done.
his is severe small and large bowel affected thanks to humiran no further major flares.

looking for support to support him he able work full time but struggling alot arthritis of feet had recent surgery to remove damage from that,but can not have anti inflammtories due to his crohns.

hes also on b12 jabs by nurse at gp clinic,nice meet you all we trying for child.

was scariest time last christmas seeing him so ill when caslled ambulance.
he then had another allergic reaction to a anti inflammtory they gave him for back in er.

threw all this he has managed keep job got promotion.
countrylass
 
Hi Karen how are you today, am Harin, Today is my first day on this forum and it's really been a blessing. I have read so much and feel like this is such a great treasure I found. I hope one can find the support here too! Just know you're not alone

I was diagnosed with crohn since 1996 when I was just 26, since then I have been and seen so many ups n down ,now am 44 Happily married ,I had One operation and now am on Azathioprine 2 pills daily since 12 years .
 
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Karen

FRIEND 4 1 & ALL


I would like to take some time to WELCOME each and everyone who is new since I was last on here. WOW it brings tears 2 my eyes to read everyone's story & 2 see how this awful disease has affected so many lives. I want each & everyone to know that you are prayed for each & every day by me. I am guessing that it has been hard for all of you to see you LOVED ONE go thru this. I know that ah when my husband found out it was so very hard for both my daughter and I as I had to sleep in the guest room most nights because he was so sick all the time. But ... he has made a lot of changes over the years and has learned what thee triggers are & so what to eat & what not to eat.

I'm praying that all of you have done the same thing. One note that you might to remember is to KEEP A FOOD JOURNAL and that will help remind you of what you ate & what your limits are ...

So feel free to share your story & if you have updates please do share them as well. So, I will do my best to be back soon to share what is new at this end with us ... One plus my husband & I just celebrated our 36 th Wedding - Anniversary this week on Tuesday.

So with that I send over lots of LOVE & PRAYERS to everyone here so take care and do come in and share !! Here is a picture that we took a OLD PEOPLE SELFIE MOMENT as my daughter calls it. We took it while we were on our mini weekend vacation. So, have a good night and see you all soon again !!
 

Attachments

Hi all.

My name is Beth. My husband was diagnosed with Crohn's in April of 1990.1 week before our wedding. The first several years were rough, with him taking prednisone (and a huge list of other drugs) on a daily basis for years. And then in 1998, while he was in New Orleans on business, he had to have emergency surgery. He'd been feeling progressively weaker and light headed. Then one day he stood up and nearly passed out. He decided to go to the ER. (the dork drove himself! I haven't let him live that one down)

We had 4 young children at the time, the youngest being 9 months old. Thank God for his parents. They were able to care for the kids so I could fly out and be with him. I was terrified.

It took a few days for them to figure out where the bleeding was coming from and by the time he'd had surgery and it was all said and done, he'd needed 12 units of blood. Surgery was 14 inches of the small intestines, close to the ileocecal valve.

He spent the next 15 years pretty much in remission. (can't tell you how happy he was to be off the nasty that is prednisone!) Needing outpatient surgeries for fistula issues, but no more abdominal surgeries. We've felt very blessed, since the surgeon assured him that he would most likely need another big surgery within 10 years.

Then a right before Thanksgiving he started having more/unusual pain near his Crohn's site. After a couple of weeks we discovered that he'd developed an abscess. Since then, his Crohn's has flared back up and we have been working with his doctors to get him back into remission. (currently, at 40mg of prednisone a day, along with Imuran. He's had a couple of false starts with the Imuran but after 2 months, it's looking like it is not really helping him.

So at this point, after much discussion, it looks like he will be giving Remicade a shot.

We have been so blessed the past 24 years. He has always lived life to it's fullest and is one of the most optimistic people I know. He says he has to do things he is able to do NOW (meaning ever since he's been in remission) because he knows that one day he may not be able to. But this latest bout has him down. He's getting frustrated. He is hoping for a silver bullet and he's read some positive things about the biologicals.

I am a bit nervous about potential side effects. But my job is to research the heck out of this and stay as knowledgeable as possible about what is going on with his body. And, to play hardball with him when he gets it in his head to push his limits too early.

So grateful to have found this group.
 
I do all the shopping and my husband hates going to the store with me so I have to get food he is able to eat. Sometimes I feel guilty getting things for my son and I if know my husband can't eat them ... How would you guys cope with shopping?
 
I'll join! My husband was diagnosed in 1997 at the age of 16. He had a complete colectomy four years ago (I did not know him then). We met about 8 months after his colectomy, and he shared with me his struggles with Crohn's and his ileostomy right away.

He has been in "remission" since the surgery. However, he just had a resection due to an obstruction in his upper intestine last week, and we are trying to work through it together.
 
My Husband was diagnosed before we met. He has now gone over 4 years without a Flare Up. We got married 4 years ago this week. This is the first time he has been this bad since we have been married.

He does not like to discuss his Crohn's in any fashion. He is very quiet about everything. His mom has told me he never notices the symptoms until it is very bad.

The main thing I have noticed is a huge personality change along with the "normal" Crohn's symptoms. He is almost like a different person this last month. He has an appointment scheduled for next week, but I am wondering if I should bring him to the hospital sooner. We are not established with a doctor in the area, so it would just be an introductory appointment. I think he needs treatment sooner rather then later.

Has anyone else had a problem of personality changes?

Thank you so much and I am very excited to have found this Group.
 
Well hello Sandy from another Sandy. I have been married to my husband for 51 years and he had Crohn's disease when we married. He had a small bowel resection for it at age 22(regional enteritis). It has been a long emotional marriage but we still love each other. I posted more on "My Story" and they sent me to this forum. Thank you for starting it! As I said, I would marry him again but sometimes the well does run dry, especially when he is depressed. As you know, it affects your lives, have to be careful when you eat, where you eat, what you eat and so on and on it goes. True friends ask what he can eat and prepare it but some just think it is too much hassle. To make things worse, I am 72 and extremely healthy, play tennis, swim, walk and play cards with friends. Travel is just not even worth it anymore as he usually gets sick when we eat out. Things can always be worse but sometimes it just helps to vent. My dear friend was diagnosed with ALS so we thing we are blessed still.
 
Hi,
My name is Karen, im joining to learn more about crohns and ways i can be supportive to my boyfriend, we have been together now for a year and a half, he has had crohns now for about 5 or 6 years, he usually doesn't like to talk about it, which is understandable, but he is opening up some, i want to learn more and find out some ways to help him, even if its just by supporting him, i have heard juicing is something that could be helpful, anyone with some advice i would greatly appreciate, i love my boyfriend deeply and it breaks my heart to see him in pain.
 
It's been awhile since I've been on and I am so happy to see all the new joiners. The only real time my man and I have a problem is when he gets a flare. He refuses to keep a food journal but since he was diagnosed 21 years ago he has a pretty good idea of what normally upsets him. He did go through and crabby spell a few months ago as he finally got disability after being denied twice before however they want to review in a year as according to them he could be cured. He has had the disorder for 21 years and had an xlarge resection not long after being diagnosed. Not sure why they think he will all of a sudden be cured now. They are a bunch of nutbars of you ask me. Anyway enough of my moaning I am happy for so many supporters out there helping their loved ones.
 
My Husband was diagnosed before we met. He has now gone over 4 years without a Flare Up. We got married 4 years ago this week. This is the first time he has been this bad since we have been married.

He does not like to discuss his Crohn's in any fashion. He is very quiet about everything. His mom has told me he never notices the symptoms until it is very bad.

The main thing I have noticed is a huge personality change along with the "normal" Crohn's symptoms. He is almost like a different person this last month. He has an appointment scheduled for next week, but I am wondering if I should bring him to the hospital sooner. We are not established with a doctor in the area, so it would just be an introductory appointment. I think he needs treatment sooner rather then later.

Has anyone else had a problem of personality changes?

Thank you so much and I am very excited to have found this Group.









My boyfriends personality will change, never into somthing mean or annoying, but he will get really quiet and trys to clam he is just tired from work, but now that we live together im able to tell the difference of when he really is just tired or when he gets a flare up. He trys so hard to not show he is in pain, he is a very quiet person about this as well, he never likes telling anyone, in fact he didnt tell me about it at first I guess around 6 months his teenage daughters told me and he had gotten a bad flare up one day and was completely sick in bed all day long so he finally told me.
 
My boyfriend has a tendency to get very grumpy and moody during flares. The worse the flare or symptoms the grumpier and moodier he becomes. He also doesn't really like to talk about it much but now that we've been together for years he is more prone to let me know what kind of symptoms he's having not to mention I know from his mood if he is suffering.
 
Hi everybody, this is my first time posting here. I think I really need this right now.

My husband is having a bad flare-up right now and together with all kinds of joint pain. He wanted a divorce yesterday cause he said I am making him worse. He is currently going through all kinds of family dramas and saying I am not being supportive at all. I will have to admit, I am not. We are newly married and I have just moved here to the states from Hong Kong in April. I am personally going through crisis as well. All I can do is at least keeping myself saint. But with the pain and stress my husband is going through, my husband and I can't even talk casually anymore cause that just ended up fights.

The last comment he had on our relationship was, if putting killing himself and divorcing on a scale, I don't think it's that much an hard choice. Because of his health conditions, we have been breaking up and getting back together quite a few times. This time is different though, instead of breaking up, we are getting a divorce. We are still living together right now and I am hoping to be as positive as possible.

I absolutely admire everyone here who has been so supportive and selfless for their love ones. I have been reading this forum for a short while, but during the crisis, I couldn't put my words and feelings together. After the decision of getting a divorce, I am guilty to say so, but seems like something inside myself as clear-up a bit. We are still living together since this decision has just been made yesterday. I am hoping to post my thoughts so that I can get going. I am hoping the divorce is just a temporary anger he is having. But right now, I am still trying my best to support him in a way he allow.
 
Hey y'all,
Thanks for letting me join but i have something i need help with.
So my husband has no idea i'm on here, but I'm at a loss. He has had crohns disease since he was 12 and now he is 23. Two weeks ago we had to take him to the hospital because of a bad flare-up and they did a catscan. They told him his appendix was flared in the middle. Once in the hospital they gave him anti-biotics and loritab and another medicine but im not sure what it was. He was fine for a couple of days but now he is back in pain and bleeding again....and he said the bleeding is coming and going and i know better than that. They want me to get him into a specialist and get a scan of his stomach again and i would like to but it will have to be monday before i can do that. but is there anything i can do to maybe help him out? I'm giving him marshmallow root in his drinks two to three times a day and that seems to be working a little. Please help:/ Is there anything i can actually do for him? I hate seeing him in pain.
Thanks,
Stacie
 
Cook for him. Try starting the SCD - propose it as a thoughtful solution you saw and that you'll support him in the journey. It can't hurt to try it.

Personal testimony - I was 158 lbs and near surgery in early February. I was on 20 mg of prednisone, and the doctor wanted to start me on Humira. I said no. I began the SCD diet - since starting, 1, solid bowel movement a day. Only a little bit of pain here and there (which I was told would be normal for awhile) but I can run, exercise, lift, function, work, etc.

Worth a shot! if it doesn't work, at least you tried. www.breakingtheviciouscycle.com
 
I'm new here and just seen the post above. I've just clicked onto Amazon to buy the SCD book. I'm willing to try anything to get my husband into remission or at least back to some level of normality! Thanks for creating this group!
 
Hello everyone. I have been reading through the thread and have found all of your thoughts very helpful. My husband and I are newly weds of about 3 weeks although we have a 2 year old. I have often found his condition daunting and overwhelming and have failed to support him in the past. I am trying to be a supportive wife and have learned as much as I can about the disease in order to help him but yet I can't help but feel like I am making it worse. I am glad to see that I am not alone in my frustrations at not being able to help. We just moved into a house with my family and it has been particularly stressful for him. I am doing all that I can to alleviate some of his stress but seem to be making it worse and he is becoming increasingly frustrated with me. He is a very private person and I have a hard time deciphering when he wants me to pry and when he wants me to shut up. I would love some advice on how to help console the grouchy and private man who is my new husband.
 
Hi MayLillies, welcome to this forum. I hope it helps and you find good support here. I know I have over the past few years. I think you hit a nerve with me at least, and I'll bet you have with a lot of others.
First of all, congratulations on your recent nuptials, but I'm sorry your starting it with this stinking disease (I'm assuming crohns? Forgive me if I'm wrong). It is hard enough for those of us who had a few good health years and time to get to know each other on better terms. Knowing when, and when not to, say something, and what, is one of the hardest things to know in my experience. I think it all boils down to letting our loved ones know we are there for them, in the best way we can, but it still has to be two sided. Sometimes when they are not feeling their best it is hard for them to give their best to us, but we have needs too! Once in a while we have to remind them, calmly, that although they don't feel well it is not an excuse to take their frustrations out on us. With my situation, we both (my husband and I) have major health issues (mine not an IBD, tho), and I have to remind myself that he is the one I love and not to take things out on him when I'm not well. Each person involved, whether a caregiver or the one with the illness has a heavy burden and is affected. Maybe you can gently try to persuade him to join this forum also. I know many with this horrible disease (crohns, colitis, or whatever IBD), feel very alone, and with the general population it is not something normally talked about. It is doubly hard for private people given the nature of the disease. I think if given the chance, he might find it helpful to talk to those in similar situations. I'll say more later, but I'm exhausted right now. I just want you to know you're not alone either. God bless you on your start with your young family.
 
Thank You SandyUte for your kind words and advice. Reading these posts have offered me better insight into how and when to say something. I can see that it is going to be a struggle to persuade him to find ways to help himself as he has given up hope in the medical community. It's frustrating, but I can see that this disease is just the ultimate game of patience. Best wishes for you and your family.
 
Hi folks!
My name is Melanie and my partner, Rick, has Crohn's. It has been a big challenge over the time we've known each other, with lots of ups and downs. He is the one who is suffering from acute physical flare ups, but I am suffering along with him, emotionally. I wish there were more that I could do for him, but I feel so helpless. He has tried many different doctors, medications, treatments, supplements, dietary restrictions, surgeries, mindfulness meditation, etc. Some things help a little bit (and we will take every little bit of help we can get!!!), however, his health continues to deteriorate. We are getting desperate for a reprieve! The doctor's seem to be so clueless about this disease and how to treat it. They keep pushing very scary, and dangerous medications. There must be a better way, but we don't even know where to begin. Help!
:sign0144:
 
Welcome to you too, Melanie. A good gastroenterologist is hard to find, and the medicines commonly used to treat crohns are scary. Sometimes it is just a matter of weighing the options, scary meds vs scary disease. That is the simplistic way of putting things, but actually I'm in favor of the least amount of "scary" medicine the better myself. Westernized medicine does tend to push all sorts of chemicals, and you will find as many opinions as their are doctors out their on how to treat crohns, so just take the pieces what works for you/Rick, and realize that nothing is going to be perfect. My husband, Doug, ended up on humira, which is a scary drug, but I'm convinced it is also what saved him (after emergency surgery) from being in agony most of the time. He is pretty normal now. The disease doesn't go away, but in Doug's case, is in a lot better control.
I would encourage Rick, tho, to keep using those pieces of whatever helps, whether it be mindfulness meditation, or whatever. Sometimes it is just getting the right combination. Follow your instincts, and know you have support here.
 
And Maylillies, you will find ways to help support your hubby, tho he may not realize it at the time. Just by being here shows that you are supporting him. Hugzzz:hug:
 
I apologize in advance, but I'm about to compose a short novel.

My husband and I have been married for 12 years. Two days after we got married, he left for basic training with the Air Force. About two weeks into it, he got sick and so they pulled him out of basic for testing. They diagnosed him with Crohn's, so he got a medical discharge and came home.

For a long time, his Crohn's didn't do much to affect us. I guess his symptoms were controlled, or we just didn't know what the symptoms actually were. Well, in the past few years his Crohn's has gotten drastically worse. In April of 2013 he had a resection and for a while he did better. But he has fistulating Crohn's. All the fistulas are on his perianal area, and for the most part they've always tunneled outward. However, now they're tunneling up toward his urinal tract. The fistulas drain A LOT and have a bad odor from the discharge, and of course he's very self conscious about it. I can't imagine having that. Sometimes the back of his shorts will be soaked, and when he stands up from his chair, the chair is wet with this leakage. It's hard on him.

He also takes Remiciade. Thankfully, since he was diagnosed in the military, he has all his medications provided by the VA. We are extremely thankful for that. But the closest VA is an hour and a half from here. When you get two or three of those appointments a week, it's a lot of car time. He's getting tired of the driving and very discouraged. Especially when the Remiciade makes him feel sick and he has to drive home. I can't go with him, I have to stay home for work and to get the kids after school. We don't have anybody here to help us with them, so I can't go to all of his appointments with him, though I do what I can.

On top of all this, he has depression. I think it's due to the Crohn's.

Just Thursday we had a surgery consult, and it looks like the next course of action is an ileostomy. The biologics aren't doing anything to help his fistulas and he's sick of dealing with them. He feels bad a lot too, and the fatigue is so, so hard. He'll come home from work sometimes, go to sleep in his chair, and get up to go to bed.

The ileostomy has brought up a lot of emotional issues for him, namely him thinking he can't do his job anymore (which I do agree with him about) and feeling like a failure because he can't support the family like he feels he should be able to. I've worked part time, and so I'm looking for a full time job. He needs this surgery, but can't have it unless I'm working full time, so there's the added stress of that. And then the kids, he's worried he won't be the dad they're used to after he has this surgery. He's afraid how it'll change his relationship with them. They're young, eight and seven, and our seven year old is especially worried about his dad when he's sick. So my husband has that to worry about, too.

All of this has made him very moody. He goes back and forth, from what I've always known him as to this crying, moody man who I can't help. I love him, and I want to support and help him, but it's getting harder and harder. I just don't know what to do anymore. All I can do is be here for him and assure this isn't going to make me leave. We have a strong marriage and relationship, but I know this has to make him worry sometimes. After all, we are going through a lot.

The past few weeks I've been really upset and moody myself, it seems like I can't do anything right or I can't do enough. With the way he's acted lately, it's made me feel even worse. I'm not sure how to deal with him or what to say, sometimes I don't even want to try. It's hard to deal with his depression. I'm almost to the point of walking away and not trying anymore when he's in those moods. I'm just not sure what to do.

I think I found a full time job and I'm really excited. I was relieved by it, but he doesn't seem to care. I thought, hey, I've found a solution to one of our biggest problems. (Finances, those are always stressful.) But then he's almost so nonchalant about it, I'm not sure what to make of it. It's really discouraged me.

I've been in tears the past week, unsure what to do, and I have no close friends so I don't have anywhere to go vent. My husband is on a support forum so I thought maybe there's a Crohn's spouse forum out there somewhere. So glad I found it. I see a lot of people going through many of the same things. I don't want to say it's a relief to see it, I hate it that anybody is going through it, but I will say it's nice to have found the people who unfortunately are.

I respect everybody for sticking it through with their spouses and doing what they can. I know first hand, it takes a lot of strength to deal with all of this. I feel my strength failing, though. I'm having a hard time keeping myself together. I'm a Christian and I can't imagine doing this without my faith. But sometimes, and I feel terrible for saying it but feel like it's the truth, I need somebody to say something positive to me. God tends to be quiet. I know He's there, but I'm not getting any affirmation right now.

Whew. Well, I guess I did drop a short novel on you. Sorry for the rambling. I've been so upset the past week, for the past three days all I've done is hold back tears. I see all the wonderful things in my life and I see all the blessings I have, but the bad things are taking over. They're on the forefront of my mind now more than anything else. Even if nobody reads all of this, it feels better just to get it out.

Thanks so much for letting me go on like this. I needed it. I hope all you strong people have a moment for yourselves today, to renew your strength and relax.
 
Dear, sweet Donna! I hope you don't mind if I call you that, but I can tell you are sweet and kind. And it's ok to vent away, I have done my share of that lately, even here on this forum in other threads. It's the middle of the night for me right now, and I'm tired, but I want you to know you are not alone. I don't have the energy to say what I really want to right now, because like all of us, we are going thru our own things (and it's the middle of the night). Also like you, I wouldn't wish crohn's or even being a crohns spouse on anyone, but it is good to know others understand. Your husband's energy sounds a lot like my husband's energy level, he comes home from work, falls asleep in a chair, then often I wake him to go to bed. And having crohn's is depressing, which also doesn't help with the energy levels. Frankly, what you wrote helped me so I don't feel so alone. Of course, nobody's life is exactly the same (or we wouldn't be here :) ), but I was feeling sorry for myself a lot lately when I read your "novel" and realized things could be a lot worse for us right now. I really feel for you and don't know how you are doing it frankly. But then, I'm sure there are things you might consider as "worse" if your lots in life were changed with ours right now too. Suffice it to say, I think there are a lot of us around here with full plates. Very full plates.
Hang in there, talk here all you want, sometimes people get things here (and sometimes they don't, but I find more the other way), but if you are like me, sometimes you just have to get it out. God may seem silent at times, but He is there. It is after your faith is tried that He reveals Himself more.
I hope we can be friends.
 
SandyUte, I can't tell you how much I appreciate your post. It all came to a boiling point with me last night, I cried more than I slept. My husband was out on a guy's night out so it gave me the chance to let myself actually feel the stress I'm under. I have a hard time admitting to myself that I'm stressed and that I have a lot going on. Sometimes it's difficult for me to think about just how much I have going on. I keep thinking my situation isn't that bad, and that I'm being a big baby. Then things like last night happen, and I'm a blubbering fool all night long.

But that's okay. I think everybody has to have pity parties. We are going through a lot. Crohn's isn't a common disease, it's hard to understand it, and the world doesn't give a lot of leeway to people with Crohn's. It doesn't fit in with the 'socially acceptable' diseases. As terrible as that sounds, I know there are people who do understand what I mean by that. I think forums like this are fantastic. It really helps us understand that we aren't alone in our struggles.

You saying that my post made you feel better really put a highlight on my day. I love to help people, and though I rambled with a lot of self pity, I do hope it was at least a little inspiring or helpful for you in some way. I don't want to say anybody's struggles are worse or harder than another person's, we all face our own struggles in our own way. I think we do all have the same common struggle in that we're trying to be supportive, but that's not easy to do. Sometimes we don't know how. And if you're like me (I have a feeling you are), you leave yourself out of the top list of things to concentrate on. So I'm going to make it a point this week to do something just for me.

What a great thing it is to have somebody say 'I know how you feel.' I'm usually not one for that sort of thing, after all, nobody knows how each other feels, but in this case it's so comforting to know somebody really does know. This is a unique thing we're going through, and I thank God He led me to this forum. I thought He was being quiet. He was just coming through in the sound of my keyboard. He talks, we may not always understand the method by which He does so, but He talks.

I pray for you in your struggles and for your husband. Thanks for your reply, you have no idea how much I appreciate it. I also hope we can be friends. It's so nice to breathe a sigh of relief when I throw out all these Crohn's related words and the first response isn't, "what does that word mean?" Sometimes not having to explain the particulars helps us explain the other parts of what we're going through.

I might ought to mention, you can expect novels pretty frequently from me. I'm an independent author, and I love to write. So that just tends to be one of the things I can't keep myself from. :)
 
Donna, I just wrote back again (tried to anyway), but lost my internet connection, lost my post. I will message you tomorrow. Hang in there!
 
Hi Everyone -

May I please join your support group?

My husband was diagnosed with Crohn's disease after our first child was born 5 years ago, although he's had intensifying symptoms since we met in 2001. Up until this past summer, Crohn's was something that made its presence known a few days a month, but ever since July, he's been in a constant flare. There are no more good days, or weeks. There are good hours. The life that I knew is completely turned upside down. We no longer sleep in the same bedroom. We no longer share meals. We no longer go out and do anything as a family. He goes to work, comes home and spends the night on the couch or in the basement with a heating pad on his belly. I know he feels terrible and I am at an absolute loss how to procceed with this new "normal". I don't know how to help him, or how to help the rest of the family cope.

I am so overwhelmed with everything that is falling on my shoulders while he is unwell. I was already the breadwinner, but now I am doing 90% of the housework/household management and 70% of the childcare. He watches the kids while they play and he fixes them a basic dinner since I am not yet home from work, but I do the rest. I am tired and crabby all the time - at the kids and at my husband. My poor kids are confused as to why thier once fun dad is now stuck on the couch 24/7. They don't know why I am constantly snappy and yelling. And my husband thinks I am mad at him for being sick, which isn't true. I am mad because Crohn's seems to have stolen the parts of my life I loved most. But I am not mad specifically at him. I am scared that this disease will take my children. I am scared that my husband will die because so far all the new mediciations and the new diet have not helped and he continues to waste away and be unwell. And I am scared that I am going to lose my mind as I try to cope with being everything to everyone.

I am sorry I have selfishly penned a novel!! I am hoping some of the spouses in this group have some tips and ideas on how to manage a household when one parent is frequently out of commission, how to raise compassionate kids who don't feel neglected because they are often taking a backseat as we try to deal with this illness and how to hold on to a little piece of yourself when you have to give the rest away.

Thank you!
 
Hi Elizakate. Of course you can join... that's what we're here for. And lot of what we can do is let you vent away. Its not selfish, its a good thing to get it off your chest.

A couple of thoughts...

Has he seen his doctor about the latest problems? What have they suggested? What meds was he on and what is he on now? Maybe a new med or some dosage changes will help. What about changes in diet?

As far as kids... my parents both had some serious health problems when I was a child. They were of the school of thought of "keeping it from the kids" as a way of trying to protect us, even well into our teen years. I would say it had the opposite effect - they know daddy is sick, but not knowing anything about it is even worse. I don't know how old they are, and obviously you have to adjust for their age and maturity, but I think its good to tell them as much as you can. Maybe they can even help a little more and it will make it feel like they are helping daddy get better.

Just a few thoughts...
 
Thank you jwfoise for responding! Yes, he's been in continual contact with his GI during this flare. He was started on Pentasa and Entocort, but is being considered for Remicade. He says he feels better than he did, but a lot of the scary stuff is not getting better (low weight, periods of intense pain with vomitting, horrible stomach noises, reduced appetite, etc). Without trying to micromanage or intrude, I've tried to stay informed about what's going on. I've offered to help him change his diet. But otherwise, I feel so powerless. I'm never sure how I can help or if I can help.

I try not to hide things from the kids. They are 5 and 2. I don't give them the gory details, but I do tell them the truth - that Dad doesn't feel well and he has a sickness that makes him not feel well frequently. I am actually less concerned about them seeing their father constantly ill than I am about them having to witness my perpetual meltdown because I am stretched too thin and I am scared that the man I love is so sickly. I wish I had a more even keel, but the ups and downs of Crohn's scare me.
 
Hi ElizaKate! I find there is not a lot you can do for a spouse other than love them even thru the hard times. We can encourage good medical care and good diets, prepare what is good for them, but they will either accept our reject from their own free will anyway.
My husband, Doug, has his share of issues, like I'm sure all of our spouses have, or we wouldn't be here. I think I just stumbled on a good response for when our spouses think we are mad at them when we are frustrated with the difficulties crohn's, etc brings. One of the common problems IBDers have is flatulence, and (sorry Doug), my husband is no exception. I know he can't help it, but boy-oh-boy, can it stink! Yesterday I could tell he was feeling hurt by another comment from me about the smell, I could practically see the wheels turning above his head mumbling to himself about how it isn't fair, he has to put up with that awful disease and a wife who isn't more understanding about it. I told him "it isn't you I'm mad at. I know you can't help it! It is that awful stinking (literally) disease!" It put us both back on the same page where we really were anyway, and a little more empathy for one another. Just food for thought.
 
Sandy Ute - thank you for making me smile. I do love the man but loathe the disease. It's sometimes hard to separate the two, though. For the time being, Crohn's has turned us into recluses. The horrific stomach noises as food passes through strictures is one thing. The foul gas is another. Once he gets the flare under control I hope we can resume hiking and walking where air can circulate things. We don't even have a dog we can blame the stench on but I am considering getting one to alleviate awkward social situations. I feel very lonely since none of my friends really gets what I am up against and I've lost all social interaction where my husband is concerned. I go to work and that's about it. Other than that, I am home with the kids.

Another worry is my children. The GI says they each have a 20% chance of IBD. I feel powerless. Had anyone done anything specific with their children to try to alter the chance of developing such a painful disease?
 
Yes, it does get very hard to separate the person from the disease as it becomes such a part of them in some ways. And we do have a dog, a Boston Terrier, and they are known for their odoriferous ways too. Doug sometimes tries to blame the dog, but there is no comparison. Phew! I always know who did it!
I wish I could give you advice on the genetic part of the disease, but I have no clue as we never had children so have not checked into that (tho I do worry because my dad has colitis and I have been diagnosed with IBS, but I think since I'm now in my fifties it's a little late to try to change course of any disease for me.)
I hope things get under control quickly for your sweetheart, as this yucky, horrible, stinky disease can really take a toll emotionally. Let us know how things go, 'kay? (And vent any time you want, I always do and I'm good at it!)
 
I've offered to help him change his diet.
As your GI recommended the "white diet" (that's what my wife's GI calls it)? When she is having trouble she goes on very bland food: plain white rice, mashed potatoes, yogurt (if milk/lactose isn't a problem). The idea is high calorie stuff that is nice and mild.

I wish I had a more even keel, but the ups and downs of Crohn's scare me.
I feel your pain.

My wife went through a bad stretch a few years ago (she has Crohn's) and it was extremely stressful for me.

I hope Remicade works out for you two. During the last bad time my wife was put on Humira and it has been like a wonder drug.
 
Thanks for this group! My husband was diagnosed with crohns in 2005 and has done well until this June. He was prescribed Pentasa to use regularly and given prednisone, cipro and flagyl when he had flares. His sister also had the disease and had horrible problems since she had allergies to most medications. We felt we were controlling well and then boom there has been unrelenting issues since June. He has recently been given Entyvio infusions and is scheduled for a third one today. We have been careful with food and things will be better for a day or 2 and then we are back where we started. It is helpful to see what others have tried with diet and any info on Entyvio would be appreciated.
 
Hi Everyone -

May I please join your support group?

My husband was diagnosed with Crohn's disease after our first child was born 5 years ago, although he's had intensifying symptoms since we met in 2001. Up until this past summer, Crohn's was something that made its presence known a few days a month, but ever since July, he's been in a constant flare. There are no more good days, or weeks. There are good hours. The life that I knew is completely turned upside down. We no longer sleep in the same bedroom. We no longer share meals. We no longer go out and do anything as a family. He goes to work, comes home and spends the night on the couch or in the basement with a heating pad on his belly. I know he feels terrible and I am at an absolute loss how to procceed with this new "normal". I don't know how to help him, or how to help the rest of the family cope.

I am so overwhelmed with everything that is falling on my shoulders while he is unwell. I was already the breadwinner, but now I am doing 90% of the housework/household management and 70% of the childcare. He watches the kids while they play and he fixes them a basic dinner since I am not yet home from work, but I do the rest. I am tired and crabby all the time - at the kids and at my husband. My poor kids are confused as to why thier once fun dad is now stuck on the couch 24/7. They don't know why I am constantly snappy and yelling. And my husband thinks I am mad at him for being sick, which isn't true. I am mad because Crohn's seems to have stolen the parts of my life I loved most. But I am not mad specifically at him. I am scared that this disease will take my children. I am scared that my husband will die because so far all the new mediciations and the new diet have not helped and he continues to waste away and be unwell. And I am scared that I am going to lose my mind as I try to cope with being everything to everyone.

I am sorry I have selfishly penned a novel!! I am hoping some of the spouses in this group have some tips and ideas on how to manage a household when one parent is frequently out of commission, how to raise compassionate kids who don't feel neglected because they are often taking a backseat as we try to deal with this illness and how to hold on to a little piece of yourself when you have to give the rest away.

Thank you!
This disease is hard to deal with when it is just me and my husband. I can not imagine how hard it must be for a young family. No wonder, you are scared and sometimes snippy. I admire you and what you are doing. Hang in there and try to deal with just today since that is a pretty big issue.
 
Hi everyone,

I hope you don't mind a very worried Scottish guy joining your group. I have read Elizakate and Donna's stories and they resonate so much with my story which, I fear, is about to get so much worse.

My fiancée is 27 and was diagnosed with Crohns 7 years ago. She's had a lot of ups and downs but the last 2 years have been nothing short of a living hell. She had an abscess in her rectum which is now a fistula, this has leaked constantly for the past 2 years and the doctors have now advised that they need to bypass the rectum.

Unfortunately this means my beautiful girl having to have a stoma. I have been there for her since this began. We've been together for 8 years and I've done everything I can to support her through the worst of all this but I really worry about her wellbeing after they form the stoma. She has been told the operation will be before March 16th 2015, no firm date yet but she is starting to prepare herself mentally for it. She's been in for operations in the past and she is always very depressed after the operation. This will be the biggest of the lot and I'm not sure how much help I'll be.

She is absolutely terrified of having a stoma. We're due to be married at the end of August 2015 and she is petrified that something goes wrong on our wedding day.

I'd love to hear from Donna if her husband had the operation and how he has come to get to know and be used to this huge change. If anybody else has experience of a spouse being given an ileostomy and how they helped them through it, I'm all ears.

It will never change anything between us. I love her even when she's down and crying. This is going to be an entirely different experience and I need to make sure I'm prepared to help her as best I can.

Thanks all.

Seamus.
 
Hi Seamus -

My new mantra is "one day at a time". I know that you and your fiance are probably trying to assess all the impacts that her surgery will have and are perhaps worrying about things that are not yet a reality. It's a hard disease to plan around - both for the patient or for anyone involved with the patient. Also, since stress plays a huge role, we try not to add to the every-day stress of Crohn's by imaging complications and possibilities that aren't yet ours to deal with. It's hard to live in the moment, but Crohn's has taught me the power of such thinking. It has also taught me that some moments sure can suck, but they do eventually pass. Cross the wedding-day bridge when you get there, and perhaps instead focus on the surgery as a possibility of feeling better?
As spouses and partners, all we can do is be there, listen, perhaps encourage the "glass-half-full" thinking even when we need someone to cheer us up. You've done a wonderful job being there and your future wife is lucky to have your support.
 
Hi Seamus -

My new mantra is "one day at a time". I know that you and your fiance are probably trying to assess all the impacts that her surgery will have and are perhaps worrying about things that are not yet a reality. It's a hard disease to plan around - both for the patient or for anyone involved with the patient. Also, since stress plays a huge role, we try not to add to the every-day stress of Crohn's by imaging complications and possibilities that aren't yet ours to deal with. It's hard to live in the moment, but Crohn's has taught me the power of such thinking. It has also taught me that some moments sure can suck, but they do eventually pass. Cross the wedding-day bridge when you get there, and perhaps instead focus on the surgery as a possibility of feeling better?
As spouses and partners, all we can do is be there, listen, perhaps encourage the "glass-half-full" thinking even when we need someone to cheer us up. You've done a wonderful job being there and your future wife is lucky to have your support.
Thanks ElizaKate.

You're probably right. One day at a time is the best mantra. We'll have a good night tonight for New Year and know that this time next year we will be husband and wife.

Happy New Year to you and your family.
 
It will never change anything between us. I love her even when she's down and crying. This is going to be an entirely different experience and I need to make sure I'm prepared to help her as best I can.
Hi Seamus.

My wife has been fighting Crohn's since before we met and we are coming up on 25 years of marriage. About 10 or 12 years ago she had to have her rectum and large intestine removed and get a stoma (and this was also after several past surgeries too).

And yes, it was pretty traumatic, both physically and emotionally. But we got through it. And you two will also.

I don't know how things work in the UK and what facilities are available. A couple of things that helped us: my wife worked with a couple of really good GI nurses who helped her learn who to handle things. Just getting the mechanics down will make things easier.

We also did some couples' therapy with a therapist who specialized in dealing with chronic diseases (I think she mostly worked with breast cancer survivors). That was extremely helpful.

I hope you both work your way through this.
 
Hi Seamus.

My wife has been fighting Crohn's since before we met and we are coming up on 25 years of marriage. About 10 or 12 years ago she had to have her rectum and large intestine removed and get a stoma (and this was also after several past surgeries too).

And yes, it was pretty traumatic, both physically and emotionally. But we got through it. And you two will also.

I don't know how things work in the UK and what facilities are available. A couple of things that helped us: my wife worked with a couple of really good GI nurses who helped her learn who to handle things. Just getting the mechanics down will make things easier.

We also did some couples' therapy with a therapist who specialized in dealing with chronic diseases (I think she mostly worked with breast cancer survivors). That was extremely helpful.

I hope you both work your way through this.
Hi jwfoise

I know it's been a while since you sent the above message but I'm looking for some help from someone who has been through what we're going through. I'm really worried about my fiancée. Mentally she has gone downhill rapidly over the past 2 weeks.

The hospital still have not confirmed the date of her operation so it's kind of prolonging the agony. She's also not sleeping and all she can think about is the future. It's as if she thinks everything is spiralling out of her control. I'm trying to convince her that she is still very much in control but she's at her wits end with things.

The constant lack of sleep is making her mind do laps of the same things. She has a great degree and had the job of her dreams before losing it after 3 months due to this flare (which has been going on for 2 years). She now doesn't think she'll ever get another job doing what she wants to do (civil engineering). She worries about money, we're getting married in August and want our own place. She has credit card debts of £3,000 and is paying it off with employment support allowance. I'm saving my hardest to pay for the wedding but I've no idea what we'll be left with afterwards. I'm sure our parents and grandparents may help but it's going to be hard.

She also keeps asking why she has this, saying it's not fair, saying it's taken everything away from her, worrying about how the bag will look, worrying how the bag will smell, worrying that the bag will leak, worrying about the pain she'll be in when she wakes up from the operation, worrying that it won't fix her, worrying that it'll put me off her, worrying that she won't be able to have children. The list is endless. She lies awake all night every night thinking over and over about these things which makes her feel worse. Anytime we're together now she's crying. She's so sad and nothing I do is helping. We're supposed to be getting married in 6 months and she's utterly miserable. I don't know what to do or how to help her.

I just don't know what else to do. This disease is taking everything away from us. I've got the motivation to fight this and not let it beat us but my fiancée is running out of fight. She keeps saying she has nothing left. I'm going to drag her out of this kicking and screaming if need be. It won't beat us.
 
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Hello Seamus,

Have you or your fiancee seen any articles about Bethany Townsend? She is a young lady with Crohn's who has been in the British press after posting photos of herself on holiday wearing only a bikini, with her stoma bags on show to all on the beach. She has also been talking about resuming her modelling career. Look her up on the internet as she could be a great source of positivity for both of you.

This surgery will affect you both in many different ways and it sounds like your fiancee is very fortunate to have such a caring partner that wants to support her, but you need to remember to be kind to yourself, too. If you have moments of feeling negative about anything please don't beat yourself up about it - it's normal. Make sure you both keep communicating with each other and that way you can support one another through anything.

Best wishes to both of you.
 
She also keeps asking why she has this, saying it's not fair, saying it's taken everything away from her, worrying about how the bag will look, worrying how the bag will smell, worrying that the bag will leak, worrying about the pain she'll be in when she wakes up from the operation, worrying that it won't fix her, worrying that it'll put me off her, worrying that she won't be able to have children. The list is endless.
One thing I forgot to mention - she should go talk with people who have gone through this. My wife did that, both before and after her operation, and it was helpful to talk with someone who went through it. Since then, she has returned the favor to others.

If you can, get your fiancée to join this forum. A lot of the answers to her questions are here.
 
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