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08-19-2015, 08:09 AM   #1
buttER
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Relationship Troubles and IBD Support Group

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Hi everyone

IBD has come between me and my partner and the relationship is breaking down. It makes everything twice as difficult.

I know I am not the only one so I was wondering if it is possible to have a forum for people in a similar position? Or those who have worked through it.

Personally I dont want to bitch about my partner but it would be so good to get support from people in a similar situation.

There is a forum for supportive families and friends, but not for unsupportive ones!

What do you think?

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Alliesavage, Beach, buttER, cmack's Avatar cmack, colitis_itis's Avatar colitis_itis, fuzzy butterfly's Avatar fuzzy butterfly, harperj, Jennifer's Avatar Jennifer, Julia12345, Ladybugsgg's Avatar Ladybugsgg, Megeraldo3, nicolexwhite, patrick13, Rainbowchaser, ronroush7's Avatar ronroush7, shamrock15

Last edited by Cat-a-Tonic; 08-19-2015 at 03:45 PM.
08-19-2015, 02:08 PM   #2
Cat-a-Tonic
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Hi King of Orange, I've put in a request to the admins that this thread become a support group for relationship troubles and IBD, as it sounds like that's what you're trying to achieve here. The sub-forum for families and friends is to invite those supportive family members and friends to post here even if they don't have IBD themselves - I don't think we want to make a sub-forum inviting unsupportive people to come on here and post about us! That could get ugly pretty quick, ha ha.

I definitely had relationship troubles with my husband the first year I was ill. He was unsupportive and just did not understand, and there were a few times where he hinted that he felt like I was either faking or doing it for attention, that I couldn't possibly be that ill all the time. It was definitely driving us apart to the point that I started to discreetly look at apartments online as I didn't think we'd be married much longer.

Things fortunately changed for us - he got kidney stones! At first, he did the guy thing and hid his symptoms from me and everyone else. He had rather IBD-like symptoms at first as well, so he was afraid to tell me that he might have something similar to what I have. His symptoms were massive abdominal pain (in the LRQ no less, I'm presuming it was referred pain from the kidney) and vomiting that would come on out of nowhere. After a few episodes of that, he finally told me, and I took him to the ER when the next episode hit. They did CT and x-rays and determined it was kidney stones, not IBD. They told us that his largest stone was about 7 mm, and anything larger than 5 mm usually is too big to pass on its own - but then, inexplicably, they said they wanted to take a "wait and see" approach and see if his big stone would indeed pass on its own. (???)

So, 6 months passed and hubby had a lot of pain, a lot of vomiting, episodes that would come on out of nowhere, a lot of frustration and cancelled plans and feeling horrible. (Sound familiar?) Finally they decided to go in and zap the stone out with a laser (and the big stone turned out to be impacted, so there was no way it would have ever passed on its own, so he spent 6 months in pain for basically no reason). Still, hubby endured a taste of what I go through, and it's weird to say but our marriage was saved because of kidney stones. He's so much more understanding now, he realizes that yes it really is possible to be ill and in pain all the time because he lived that for a bit. Now, when I tell him I'm not feeling well, rather than sigh and roll his eyes at me, he takes things seriously and asks what he can do to help. It's such a wonderful change from where we used to be before the kidney stones!

I realize this isn't super helpful as it's not like you can just magically give your partner kidney stones, but I wanted to express that it is possible for a troubled relationship to turn around if the other person is given an understanding of what chronic illness and chronic pain is really like. I just happened to get lucky that my hubby got kidney stones and that his doctors made him wait and suffer for 6 months. Even though it was probably horrible for him, it ended up being wonderful for us.

Last edited by Cat-a-Tonic; 08-19-2015 at 02:25 PM.
08-19-2015, 02:32 PM   #3
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Hi iv been single for a very long time (mainly due to choice n circumstances), so iv not had this issue to deal with... but as cat said iv also had to endure the friends, collegues etc thinking i was trying to pull the wool over thier eyes, that i wasnt really as ill as i made out. that was till i got rushed to hospital n dx with crohns, and even after that to a degree, till i then had surgery to remove the diseased part of my bowel... that shut them up big time, this darn thing can destory more than our bowels, but not if we dont let it !!! king if you love your lady please try and sit her down n talk, even show her some posts off here ,so she can see how horrid it can be for all with it, it may help her get a grip on what its like.. hope this is of help to you, best wishes n hugs .. take care..
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08-19-2015, 04:55 PM   #4
buttER
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Hi cat-a-tonic and mandyk
I think Cat knows my story already. It started about 4 years ago. My relationship was turned upside down when I was so ill I stayed in bed most of the time. I was too sick and exhausted and weak to get up. I am normally a get on the bike, hike up the hill kind of person. My husband told me that even if I was ill I should ignore it and pretend I was not ill. Because that is what they do in his family. And then later he told me there was nothing wrong with me (because that is what one doctor said).

The struggle with IBD and the road to diagnosis has been done completely alone: in a foreign country, with no friends or relatives nearby, with no support from my husband, and with 2 small children to look after. The flare came on during the second pregnancy. Never have I felt so alone in my life. I still have that feeling.

The only times my husband came to a dr appointment with me was when I physically could not get there myself. And this year, after he talked to a friends husband (the friend has breast cancer and her husband is fantastically supportive) he asked if he could come with me to an appointment, but his lack of interest was embarrassing.

I wish I could say that it was the love and support of my husband that has helped me through this. But I can't.

There are the practical issues as well that I am sure other people are also facing: I had to give up my job so I am financially dependent on my husband. Now I feel I have enough strength to start working again, but I know I do not have enough strength and energy to work AND look after the children. It is such a difficult situation. I have to broach it carefully with my husband because I will need as much (financial) support as possible from him if I want to be involved in bringing up my children.

So there, that is my story, and I am sure there are others so similar, we are not alone.
Cat-a-Tonic I love your story and I secretly wish my husband would get ill to see if he becomes more understanding. But of course, they don't do illness in his family.
08-19-2015, 05:15 PM   #5
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aw so sorry, i took the king to mean you were male, many apologises.. lordy thats a rough trek youve been on hun, sending you love n support x
08-19-2015, 05:17 PM   #6
Cat-a-Tonic
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King of Orange, my husband apparently developed the kidney stones because he was eating a lot of peanut butter at the time. Seriously. Every day for breakfast he'd have 2 or 3 bananas, and he'd completely slather them with a large amount of peanut butter. He'd do that for a snack as well some days. He would go through a large 6 lb tub of peanut butter every 3-4 weeks! That's a huge amount of PB! So when he had the stones and was talking with his urologist and the subject of cause and diet came up, and he mentioned how much peanut butter he eats, his urologist was shocked and immediately pegged peanut butter as the cause. My hubby has since cut back on his PB consumption (a 6 lb tub now lasts several months) and no more stones. Sooo, just saying, you could tell your husband that there's this great new diet which involves eating tons of peanut butter. Ha ha.

They don't "do" illness in my husband's family, either, although they've become more understanding. They weren't always understanding though. In fact, when I first got sick, like just a few months into it, I was terrified of food because I was in the early stages of figuring out what my triggers were, and "new" foods terrified me to the point that I wasn't eating hardly any variety, just the same few safe things. We went to dinner at my husband's parents' house one evening and that was something I'll never forget. My father-in-law got drunk and yelled at me, he said some horrible things and didn't stop even after I started crying. He said that if I can't eat "normal" foods then my husband (his son) will leave me and it will be my fault that the marriage failed, he said that he couldn't wrap his head around being ill all the time so therefore it isn't a thing that exists and therefore I'm just faking for attention (my hubby had hinted that he thought I was doing that, but his father just came right out and drunkenly accused me of it). I ended up crying and the stress of that night put me into a horrible flare. As I was leaving in tears, my mother-in-law surprised me by actually being supportive - she hugged me and said I can call her anytime if I need to talk. She must have also had a stern talk with her husband. I avoided my in-laws for quite some time, but after maybe 6 months we went for a visit and I just decided to be cool but civil. My father-in-law had done a complete 180 change - my hubby made a little joke about how I can't eat much of anything, and his father immediately jumped to my defense, saying that my hubby should be nice and that it must be difficult to have an illness that forces me to have such dietary restrictions. !!! Ever since then, my father-in-law has been kind to me. I don't know what my mother-in-law said to him, but it seems that some people can change their attitude towards chronic illness even if they don't experience it for themselves. I wish you had someone like my mother-in-law in your husband's family. But, you do always have the support of the forum. Big hugs!
08-19-2015, 05:25 PM   #7
buttER
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Wow what a horrible experience. Sounds like a movie! So much for feeling welcomed into the family.

Actually I am going to the in-laws for a week next week. They are french, need I say more. They live for their food, nearly all conversations seem to be about food. It is a nightmare, not so much at their house - they have worked out its easier if I cater for myself - but when we are invited to other peoples houses I hate getting the negative attention. In a foreign language when it is hard enough to explain anyway. And they eat far too late for me. Wish me luck! Oh yes, and pretending to play happy families also wont be easy.
09-22-2015, 03:56 PM   #8
buttER
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Hi guys and gals

I've just seen this is now a support group thread!

I told my husband I want to leave him because I have no confidence in being looked after in the future. And we are both miserable, he does not like the life we lead with this illness in the background. He seems to think there is a miracle cure and that our relationhip will be better when I am better. I do not want to wait that long!!!

Anyway, while I was really ill he told me that there was nothing wrong with me and that people are supposed to pretend they are not ill if there is something wrong. So of course I did not even bother telling him how rotten I was feeling - even though it must have been so obvious being chained to the toilet and my bed for months on end.

Now he is telling me how could he have known I was ill if I didn't tell him!!! And I think, well actually you did everything to deny that I was ill, what was I supposed to do.

Sorry for the rant, difficult times. Luckily quite by chance I met a neighbour who has had a very similar disease path and timing to mine, the difference being she had doctors and a husband who took her seriously and supported her from the outset. She gets mad when she hears my story. She has been in remission for 3 years on 6-MP whereas I am waiting for my follow-up appointment and medication review in October, it took me 4 years to find a doctor that takes my story seriously.

I hope you are all well or as well as can be expected!
09-22-2015, 04:55 PM   #9
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I know the kidney stone issue well. I am high risk because of my crohns and the two biggest foods that got me through rough times, beef and chocolate, are two huge risks. Added to poor water absorption and I have had I believe four trips to ER for stones now. Still have a 5+ mm stone in right kidney. They blasted apart a 9 mm one in March. Made some adjustments to diet and I seem to have better absorption. They sure aren't fun. I think for me the pain is worse than crohn's partial obstructions.

I have been fortunate that I have support from my wife. She got to see some bad attacks before we got married and decided to stick it out. So far it has worked through 3 surgeries, a temporary ostomy and the stones!
09-22-2015, 05:10 PM   #10
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King, congrats and condolences on leaving your husband. I'm sure it was a hard thing to do but it sounds like you are doing what is best for you and your health. I'm sure it is difficult right now, sending you my support and lots of virtual hugs. If you need anyone to talk to, I'm on the forum most days so I'm here if you need to vent or just need someone to listen. I'm glad to hear you've found a neighbor who is understanding and supportive, it's very good that there's someone in your life who is caring and knows what you're going through. No need to apologize for ranting, you're welcome to rant on the forum anytime you need to. We're here for you! Sending you a big hug!

As for my husband, he developed yet another kidney stone. He'd cut back on peanut butter, so this time he thinks it was because he drinks a lot of tea (he really likes to find something to blame, apparently) so now he's cutting back on tea as well. He drank a ton of water to try to flush out the stone, and lo and behold, after a couple weeks or so he came out of the bathroom looking very triumphant with the stone wrapped up in a tissue. Yes, he was able to pass the stone on his own this time. Which is good because he couldn't even get a GP appointment until December (probably even longer than that for a urology appointment). So once again my hubby dipped his toe into the waters of health issues. I feel like the more experience he has with pain and illness, the better he'll understand me and my illness, so even though I'm sure it sucks for him, for me I can't see it as a bad thing.
09-22-2015, 05:12 PM   #11
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Shamrock, that's awful - at least for me and my hubby, he has kidney stones but no other health issues, and I have IBD but no stones (knock on wood). Having kidney stones and IBD at once, that sounds horrible! You definitely have my sympathy.
09-22-2015, 06:11 PM   #12
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My crohn's is well under control, and even with the possible challenges of stones I am getting a lot of exercise done.
02-10-2016, 02:51 PM   #13
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hey guys, I was hoping if I could have some help and advice on what I could do to help support my boyfriend. he is currently very ill with his Crohn's, and it is bringing him down ALOT! He says he never knows ways in which I can help, which doesn't help me in any way, so I was wondering if I could find some ways to offer support?
02-10-2016, 03:42 PM   #14
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just ask him if you can help und when he says no accept that.
when i having a flare i just wanna be alone and lay in my bed ...
and i always find it annoying when always be asked "how i can help" because theres not really much what you can do.
just takes time and rest till flare goes down ...
05-29-2016, 09:02 PM   #15
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Hi, just seen this thread and the only thing i can say is that it help s me a lot receiving re assurance and compliments no matter how crap i look.. Receiving that of my partner everyday and he keeps telling me.. Hes got me .. And everything will be fine... It helps especially like it is at the moment were i couldn't move without narcotics.. I do feel like a burden to him as he pulls the weight for both of us.. .. Best .. Every night he tells me i am beautiful and he his glad to be able to see my frequels as otherwise i usually wear make up( not at the moment as my face is itchy, and sore) the hug on the end of the day and every morning he tells me .. If anything is... Just ring me and make sure your phone has got a full battery... I hope this little input of my relationship helps you.. Dont give me wrong there are moments were i ger so upset and start snapping at him and automaticly he snaps back but on the end of the day .. He hasnt run away yet and keeps holding my hand in tuff times... Hugs x
06-17-2016, 11:23 PM   #16
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hey guys, I was hoping if I could have some help and advice on what I could do to help support my boyfriend. he is currently very ill with his Crohn's, and it is bringing him down ALOT! He says he never knows ways in which I can help, which doesn't help me in any way, so I was wondering if I could find some ways to offer support?
Where I live there is a local support group for folks who are dealing with their IBD. ( I have never attended, but I know it is there if I need it. ) Maybe there is a support group where you live ?
06-17-2016, 11:30 PM   #17
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I live alone but I have an older sister. She doesn't understand how much my Ulcerative Colitis has affected every part of my life.....physically and emotionally. I have been sick for almost 20 years. I have been trying to get her to understand my depression and anxiety too, but no understanding whatsoever from her. Too much of my time and energy spent on trying to get her to understand my illnesses. I need all that energy for myself. Everyone have a good weekend.
02-03-2017, 06:36 PM   #18
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Hey all,

I lost my wife but not my life. No kidding. I feel for you all with IBD causing breakups.

"If you can't put up with me at my worst, you don't deserve me at my best"

-Unknown, but whoever it was that said it first is a smart one in my books.


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02-03-2017, 07:12 PM   #19
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I am sorry, cmack.
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02-03-2017, 07:43 PM   #20
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Thanks Ron,

I came to the conclusion a long time ago that she wasn't the right one for me.

Being a bachelor isn't so bad. If I thought I had the right lady in my sights. I would be ready and willing to give it another go.

I needed to fail before I could learn to succeed.


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02-03-2017, 08:54 PM   #21
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So true cmack, I went through many relationships that didn't stick around through the tough times, never worth my good times then.
02-03-2017, 08:56 PM   #22
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Thanks Lam!
03-14-2017, 09:06 AM   #23
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I should give a little update since this thread has been revived. My marriage is now better than ever. I had my worst flare ever last year, and my first hospitalization. It's been a very bumpy road trying to claw my way out of that flare (I'm still on pred and having nothing but trouble trying to get off of pred). My hubby has been very understanding, he's often asking me how I'm feeling and how my guts are doing, if I'm in any pain, if there's anything he can do for me, etc. It's been a crappy year for sure, but my marriage is solid.
03-14-2017, 09:08 AM   #24
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I should give a little update since this thread has been revived. My marriage is now better than ever. I had my worst flare ever last year, and my first hospitalization. It's been a very bumpy road trying to claw my way out of that flare (I'm still on pred and having nothing but trouble trying to get off of pred). My hubby has been very understanding, he's often asking me how I'm feeling and how my guts are doing, if I'm in any pain, if there's anything he can do for me, etc. It's been a crappy year for sure, but my marriage is solid.
I am glad about your marriage, Cat.

11-15-2017, 10:13 AM   #25
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I am glad for you Cat, too. 🙂. I have been sick for four years and my husband just left me for his parents. We were happy while I was well but he was suddenly unavailable when I started going downhill. I was sick lifelong and it was fine because he was a homebody. I have been sick since my last hospitalization in 2014. Anyway another time for the history but the last few years have been hell for me. Part of me understands why he bailed. I was okay the first two nights alone but I got extra sick last night (woke up ready to use the bathroom while gagging. )This happens when I have flares and I have had insomnia and night sickness five of seven nights per week. I didnít even expect my husband to get up with me when he was here. But heíd get upset that I woke him and demand to know ďwhatís going on ď. He would be so mean to me Iíd try to hide being sick because he made it so much worse. So last night I tried to stay strong and not panic (I am able to wait out a panic attack to pass now). But the cramping and pain was so bad I called my parents to come over. I am still in disbelief myself that I am 39, sick, and alone now. My folks are divorced and remarried and live close by. I wished my husband would not have stopped me from having my parents help when he couldnít or didnít want to. I canít imagine this is real 😔
11-15-2017, 12:52 PM   #26
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Aw bless you. What a stinker that hubby walked. I thought marriage vows said in sickness and in health. Just goes to show some people dont take them seriously. I know crohns can be hard work to live with n be around but come on wheres the loyalty !!!.
I hope someone does the same to him sometime then he will realise how much that hurts.
Girl you can do this without him. Sounds like he wasnt much help to you before he left anyway. So get the help n support you need from your family n friends. We are always here for you too. Hang in there . Big hugs n love 💞
11-15-2017, 02:18 PM   #27
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Thanks it means a lot. I just got back from my doctor and he was pretty disgusted he hasnít taken me to the hospital. I am on day 3 of no fluids, days 5-6 no food. Now Iím scheduled for emergency GI appointment, colonoscopy, and prescribed an extra 50 mg of Prednisone. I hope I will get better fast. Definitely glad heís not here while I am on that much Prednisone. 🙂
11-15-2017, 02:51 PM   #28
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I am glad for you Cat, too. 🙂. I have been sick for four years and my husband just left me for his parents. We were happy while I was well but he was suddenly unavailable when I started going downhill. I was sick lifelong and it was fine because he was a homebody. I have been sick since my last hospitalization in 2014. Anyway another time for the history but the last few years have been hell for me. Part of me understands why he bailed. I was okay the first two nights alone but I got extra sick last night (woke up ready to use the bathroom while gagging. )This happens when I have flares and I have had insomnia and night sickness five of seven nights per week. I didnít even expect my husband to get up with me when he was here. But heíd get upset that I woke him and demand to know ďwhatís going on ď. He would be so mean to me Iíd try to hide being sick because he made it so much worse. So last night I tried to stay strong and not panic (I am able to wait out a panic attack to pass now). But the cramping and pain was so bad I called my parents to come over. I am still in disbelief myself that I am 39, sick, and alone now. My folks are divorced and remarried and live close by. I wished my husband would not have stopped me from having my parents help when he couldnít or didnít want to. I canít imagine this is real 😔
Sending support your way. You shouldn't be treated that way. I'm feeling kind of bad about my music choices of late too in the misc. section. I can feel your pain.
11-15-2017, 05:45 PM   #29
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Hey Rainbow,

I got ditched by my wife years ago. If you ever want to talk, I actually do have some idea what it's like. It hurt so bad at first and I tried to work things out and go to counseling, to no avail. She had me (and herself) totally convinced it was all my fault, instead of realizing that nobody asks for this disease. Then suddenly came a moment of clarity, I realized that she wasn't the right one or she would never have left me holding the bag during the hardest time of my life. How are people so damn insensitive!!?? I hope you get feeling better soon, both mentally and physically. You deserve better.


Chris
11-16-2017, 01:43 AM   #30
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Thanks it means a lot. I just got back from my doctor and he was pretty disgusted he hasnít taken me to the hospital. I am on day 3 of no fluids, days 5-6 no food. Now Iím scheduled for emergency GI appointment, colonoscopy, and prescribed an extra 50 mg of Prednisone. I hope I will get better fast. Definitely glad heís not here while I am on that much Prednisone. 🙂

I really hope the extra prednisone gets things settled down quickly. Good luck with the colonoscopy hope its not too uncomfortable..
💞
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