Could someone help me understand??? Please...

[Wife2Crohns]

Does anyone have a hard time being around your friends or family? My husband is the one with crohns and although we have found something that works well for his symptoms he still just doesn't want to do anything social anymore. We can go out dirt biking all day long but when it comes to going out to eat or going to church his anxiety goes through the roof, he sweats and eventually asks me if we can leave. I think that all the humiliating nonsense he went through before we figured out how to keep all this under control scarred him in a way.
I am just wondering how everyone here copes with their social lives? Is it embarrassing? Does anyone even notice? Are you open about your issues to people that aren't sick? Does being in social environments bother you at all?
I would really appreciate your responses. I just want to understand. I just wan to be supportive.

 

[Cat-a-Tonic]

For me, even though my illness is now well controlled and I'm currently in remission, I do find that social situations can be frightening. I still need to be aware of where the bathrooms are when I go to a new place, and going to places especially where there's food present, it can be a scary prospect. I'll have a lot of thoughts like, Is there anything here that's safe for me to eat? What if the smell alone makes me nauseous or sets my guts in motion? Stuff like that. It is frightening - even when the illness is well-controlled, a flare-up or an attack of diarrhea/nausea/etc can hit at any time. And it is embarrassing - nobody wants to be the weirdo who runs off in the middle of a conversation to urgently use the bathroom, nobody wants to be that odd person who talks about poop. When I talk with people who aren't sick, I just say things like I have "tummy troubles" and leave it at that. People don't want to make conversation about diarrhea, anal fissures, abdominal pain, etc. Or if people do want to talk about that stuff, they think they know the feeling because "one time" they had a bad stomach bug. I'm sorry, it's not the same at all, and it's insulting. So I don't discuss my illness much except with my husband.

Try to think of it like this - even though your husband's illness is well controlled now, that's no guarantee that it'll be under control next week, or tomorrow, or even an hour from now. This illness can be unpredictable and sometimes meds fail. And even though he's feeling well, it's surely still on his mind that eating the wrong thing or getting too stressed could trigger his symptoms. The illness is ALWAYS there, even when he feels relatively normal and healthy. And therefore, it's probably always on his mind. Maybe not always at the forefront, but it's most likely weighing on every decision he makes and everything he does. I know it's like that for me and I feel pretty well most of the time these days.

I hope that helped a little bit. Kudos to you for trying to understand better what he does through. I hope he continues feeling well for a long time. In the meantime, don't push him too hard to do things he's uncomfortable with. This illness is just as mental and emotional as it is physical.

 

[Gwen pippy]

Hi Wife2crohns and welcome to the site

I am glad you have joined us and anything we can do to help just shout, crohns is just such a complex condition, there are times even when we are well that we struggle to face certain situations in our lives. I was dx 25 yrs ago, as a child and long before I met my hubby, I was in remission when we met but had a flare shortly after, It was difficult explaining the condition but explaining how crohns affected me mentally was always one chat I dreaded.
I still have issues in certain situations and my hubby has learned just to follow my lead and if I have to leave he just smiles and says maybe next time, his approach has helped me greatly and if he hadn't taken that approach years ago we probably won't be a married couple today.
What I'm trying to say is that for me, pushing me into a stressful situation just makes me want to run and hide and not want to face it again, but by allowing me to leave when I need has made me want to try and challenge myself at a later date, not let it get the better of me.
Is your hubby in a flare right now, is he on meds? has he had embarrassing things happen in front of the people he is trying to avoid or is he afraid of an embarrassing situation happening? all these things can play a big factor,. Dirt biking allows him to be free and in turn he doesn't fear or worry about what can happen.
You are a great wife for getting on to the site to try and understand and help him face his fears, well done to you.
If your hubby hasn't joined maybe ask him if he would like to, talking to others like himself and fearing the same situations may help him to get to grips.
Good luck to you both and I'm here if you want to chat.
Gwen xxx

 

[Wife2Crohns]

Thank you so much for posting. Yes! I certainly let the hubby lead when it comes to social situations. Neither one of us is real social to begin with so we are perfectly happy spending our time in the back country just us and the kids but we go to church every weekend which puts us in a very crowded atmosphere for a little while and sometimes he just can't even handle it. He has not had a flare in a really long time. I don't even know how long it's been. So I was curious if the social anxiety was coming from the illness or maybe from our isolation.
Well, both of your posts helped so much. And it is good to hear that I am on the right track.
He is not flaring right now or taking any meds. He was on pred in the beginning but as soon as he was finished with his eight weeks of that we got us all on a very healthy diet and him on a stem cell enhancer. I think we must have caught it early enough because he has been fine ever since.

Anyone else??

 

[Gwen pippy]

It's great that your hubby has it under control, it may be both bothering him like if his symptoms were to return but as you say the isolation may be a bit of a security blanket for him where he doesn't have to worry about these social situations to often. I went through a stage where I couldn't even leave my home but that started to wear off when my hubby was working and I had to go out myself so I started off small and each trip was longer and in busier settings, now I have two children and I have to face situations on a daily basis that would have sent me under a rock 6 years ago.
How does the stem cell enhancer work, I've never heard of that.
Gwen

 

[Wife2Crohns]

Umm, lets see if I can explain this the way it was explained to me...

(Iv heard it a million times so I am sure I can do it some justice)

Stem Cell Enhancers encourage your body to produce more adult stem cells. A human person has adult stem cells in their body from conception, as you get older the number of stem cells you have in your body dwindle, illness contributes to this as well. Adult stem cells can become any cell in your body (brain, skin, blood, ect.) They are what keep our bodies healthy, they also repair and replace damaged cells thus healing parts of the body like the colon. Yep, I think that about does it.

The drawback of stem cell technology is that it can't be controlled, the body decides where to send your stem cells. So it may help with one thing such as with depression or insomnia while not doing much for cramps or other things.

It worked right away for the hubby, and has always worked for him. My Uncle uses it for depression, it took two months of taking it before it worked for him (he's really stout guy). My Grandmother uses it because it works for the arthritis in her feet. I use it because it helps me with energy and it allows me to not be so groggy in the morning. So, it works differently for everyone but I really believe in it. I was really skeptical when Brian's Dad suggested it (for a year! HA!) but I am convinced so Iv suggested it to my family.

I guess that's all I know :boring:

 

[Gwen pippy]

wow thanks, that did explain it, I had never heard of it before and to be honest would love to try it. It sounds like it has done a lot of good. Well done Brian's dad!! I have a habit of ignoring advise esp from my in-laws hahaha
How do you get the stem cells in? sorry for all the silly questions but I'm fascinated now. I love Ireland but I know when I suggest this to my GI she'll either look at me like I should be seeing a head doctor or she'll laugh at me hysterically but I'm going to ask her anyway when I see her in Dec, just want to be armed with as much knowledge as I can be.
Thanks Gwen xxx

 

[Wife2Crohns]

It comes in capsule form! Hubby breaks them open and stirs them into his OJ, he has a hard time swallowing vitamins. And they only have one ingredient, blue/green alge.

https://www.stemtechbiz.com/shop.aspx?ID=Tayler&lang=en-US&SessionID=

This is where I order mine, Im signed up for auto payment. It's a lot cheaper. You can also order it strait from the company if you are more comfortable with that :smile: