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Does Crohns Give you a fear of going out?

S

Smelly Berr

Hi Everyone,

My name is Elly, I am new to this forum.I was diagnosed with Crohns when I was 16 yrs old. I am now 24 and the 8 years have been a stressful, painful and tumultuous to say the least. The most scary and stressful part of it or me was being out in a public place or somewhere with friends and there being no bathroom around. This would immediately cause me to start having an anxiety attack and eventually I stopped going out to places like hikes or beaches where there wasn't a bathroom very close by. There were a number of occasions where I started having a flare up and had the uncontrollable urge to go diarrhea and there was no toilet around, I actually had an accident and it was terribly embarrassing. I have now had a few operations to remove fistulas and am on Infliximab and Azatharpine. My crohns is now doing much and I only have flare ups about 1-3 times a month.
However that terrible fear of not being able to reach a toilet in time has left me a very anxious and stressed person. Whenever I am out I scour the place to see if there are toilets. If there are toilets I can relax but if not I will start sweating and my heart starts beating fast and I will have a panic attack.

This anxiety has taken over my life and I need to know does anyone else out there experiencing similar things and if so how do u deal with it?
 
nogutsnoglory

nogutsnoglory

Moderator
It is an anxiety I face and know all too well. I manage it by loading up on Imodium if I'm going out, if things are really bad ill wear a pad or adult diaper (they make some thin ones like an underwear). If I have a bag I try to carry a change of underwear with me.
 
S

Sue-2009

Good advice from gutsy noguts! I would do the same. Although I think I am much older, and the thought of a diaper used to freak me out. But, now that I'm older....I know more would understand. Have you thought about getting something medically to help the anxiety? S
 
Miss Underestimated

Miss Underestimated

Wear the adult diaper!! I took care of my Mom, after she had radiation to her genital area. She refused to wear one, and finally got so she wouldn't go out at all. Not too long after that I had to wear them. It's not that big a deal, and it's way better to be out having fun without all that anxiety than to stay at home by yourself. You're not alone, lots of us wear them when we need to. Just a medical problem, not a character weakness.
 
M

Michelle89

Location
Michigan
I am with you and miss out on a lot because of it as well. I am coming to terms with it though and carry a backpack in my car with clean up necessities and change of clothes. I am looking into the adult diaper as well. I've been told they have come a long way in how they made. Here's to hoping!
 
nogutsnoglory

nogutsnoglory

Moderator
I would also like to add that we need to live our lives. What is the worst that can happen? We crap ourselves? Yes, that is disgusting and upsetting but we will live and find a way to handle it. It's also not that likely because we will probably find a bathroom before it gets that bad.
 
Kimberly1967

Kimberly1967

I am so sorry! I was in my twenties and in college when I was diagnosed and I remember all too well how you are feeling (I am now 45). Your feelings are valid and very real. Anxiety is a side affect of this disease.

If I was having a really bad time, I just didn't go out. It just wasn't worth it. My closest friends and boyfriend (now my husband!) were very understanding over time. Those that weren't didn't stay on the friend list for the long term.

I only went to places with a rest room and became very familiar where all the nicest ones are. I also always had a pack of matches in my bag as the sulfur cut any odor that may linger after you have gone. I did keep an extra pair of underwear in my bag too.

As I got older, I became less inhibited about all of this. I would wear a pad if needed and even put on one of my kids diapers once in an emergency!! Once in a store I had an accident, grabbed a pair of underwear off the rack, purchased them and changed in the restroom.

Having kids was awesome because I always had a diaper bag full of baby wipes and stuff to use if I needed to "clean up". Funny story - once, at a family reunion I sent my 3 year old son to fetch something out of my diaper bag and he proceeded to return with a pair of my underwear that he proudly displayed on his head.

I learned to laugh about of lot of this stuff as I got older and wiser. After all, even people that don't have this disease have these types of problems. Everybody poops and has loose stools from time to time. Who hasn't eaten something bad in their lives or had a stomach virus right?

Hang in there, it gets easier over time!!
 
I

If*

Like the others I am familiar with what you describe. But: I dehydrate very bad with anti diarrhea medications and questran wears off with no warning. I am pretty thin and an adult diaper would most likely be noticed. Pads would be a little help, but fear they would have me in a puddle. If I am going to have a really long day out I do not eat the night before or until I am home. If I have advanced notice, I watch everything I eat being sure to not touch anything that may exacerbate symptoms. Items with corn syrup, sugar, fruits, white bread, lactose dairy products, pizza, greasy foods, pastries, pork, eggs, salads and I never touch alcohol. What helps a little, a dry baked potato, skinless chicken, rice, lean burger patty, hard cheeses, carrots, the new fiber bars, bland and boring. I have spent some time struggling with this myself. When I am doing a bit better I feel much more positive about situations, outings, etc. But in the thick of it I feel the humiliation of this illness. Anxiety of 'what if' seems normal.
You are not alone
Hope things get much better for you!
 
M

mwkwmn

Location
Kentucky
I understand your anxiety about having accidents. I have had several my most embarrassing was when I was playing golf with my buddies and I had an accident while standing on the green. There was nothing I could do and no one said anything but they knew. The ride home was horrible I rode with the window down and I just wanted to get home and never go outside again. ton this day nothing has been said about that day but I will never forget it. Since I realized that I wasn't going to let that keep me from enjoying things and I definitely was not going to stay in the house all of the time. Please stay strong and hang in there better days are ahead.
 
S

Smelly Berr

Thnak you so much guys for all your respones. Its made me feel a heap better. Just knowing that I am not the only one in this situtaion and that I am not crazy makes me so relieved. I never though of an adult diaper but that is somehting I seriously consider now. For the peace of mind it is def worth it. I also pack myself with anti diarrheah tablets and do not eat anything the night before I am going out. God I wish there was a cure for this disease but until then Good luck to everyone out there. Hugs:ghug:
 
kdrvn

kdrvn

Yes exactly how me and my sister feel! The other month before my sisters wedding we thought lets take Imodium now just in case of an incident I know it's bad but we didn't want it to ruin our day!! Even driving to work panics me cause I usually get stuck in traffic and if I do have to go I have nowhere to go! Very close to an accident the other week (and not a car accident).
 
Z

zabrien

most defiantly have fear of going out and know that the anxiety can make it worse. For me wearing a pad wouldnt do much good, the attacks are generally with no warning at all and are almost all water! I have had "accidents " also and they are humiliating to say the least!for me I wait until the afternoon to go which for whatever reason go better sometimes ang ALWAYS take my own car!I would hate to have to get into someone else 's car or have to wait for well meaning friends or family to be ready to go!I try not to get down on myself about it but its hard but tell myself kind things.After I go home have my little cry and a hot bath I tell myself try again tomorrow ha!
 
Miss Underestimated

Miss Underestimated

They make adult diapers that do not show. I took care of my Mom when she went through cancer treatment - radiation to her genital area. It left her partially incontinent. She refused to wear adult diapers so she could go out. After a while she just stayed home. She used to be more active than I was. I resolved then and there that I would be more practical about it if anything like that ever happened to me. Then it did.

I don't wear them a lot, but if I think there's a chance I might need them I don't hesitate. They have designed them so that they are form-fitting and even if it turns out they were not needed, they gave me some peace of mind if I am going out in public.
 
highlandsrock

highlandsrock

Location
Surrey,UK
Hi Elly

This is why forums are so great. You can be completely open about your fears. No one bats an eyelid as the vast majority have been there as well. I'd just like to add my vote for Loperamide (Imodium) as I find it gives me the confidence to tackle long journeys etc.

BTW - having "accidents" can affect anyone with Crohn's - Mike McReady, guitarist with Pearl Jam, has actually admitted to one whilst playing on stgae. That must be scary!
 
M

Michelle89

Location
Michigan
zabrien said:
most defiantly have fear of going out and know that the anxiety can make it worse. For me wearing a pad wouldnt do much good, the attacks are generally with no warning at all and are almost all water
Click to expand...
I have the same issues of no warning and pretty much all water, but have found the extra long overnight pads actually have helped me on numerous occasions. It does actually absorb and has saved me from having to make a full change and being able to stay out instead of come home for a shower. Mostly when I am almost already to the bathroom as it absorbs enough that if I didn't have it would have been running down my legs. I am going to the store this week to try out the adult diapers. Hey if they work for babies why not me! Babies have some pretty messy diapers ;-) It beats missing out on things with my kids because I'm to afraid of the bathroom situation. I of course carry stuff in my car to clean up and change if need be.

I think I've finally come to the conclusion - after missing out on so much my oldest child has done - that this is not worth overlooking the wonderful people and life I have and I want to enjoy them. Which I can't do if I continue to keep myself home missing out on my family's life. However, this has been a long process of me getting to this point. I think I almost had to grieve for the life I thought I should have. Once I did that, I realized that I may not have the life I thought but I still had a life, and it really is a great life. (hugs) to you!
 
M

Michelle89

Location
Michigan
Miss Underestimated said:
They make adult diapers that do not show. I took care of my Mom when she went through cancer treatment - radiation to her genital area. It left her partially incontinent. She refused to wear adult diapers so she could go out. After a while she just stayed home. She used to be more active than I was. I resolved then and there that I would be more practical about it if anything like that ever happened to me. Then it did.

I don't wear them a lot, but if I think there's a chance I might need them I don't hesitate. They have designed them so that they are form-fitting and even if it turns out they were not needed, they gave me some peace of mind if I am going out in public.
Click to expand...
Is there a specific brand you like? I've decided to get some this week and a near accident at my sons soccer game :yfaint:
 
Miss Underestimated

Miss Underestimated

I use the Silhouettes - I can't recall who makes them, but they come in a burgundy and pink box. They're fairly expensive - I started with a box of 3 to see if I liked them enough to pay for them - they really fit well. I wouldn't wear skinny jeans, but under regular slacks or shorts, they're invisible.

I also carry a feminine deodorant spray just in case - I read somewhere about a special deodorizer to use with them, but I haven't found it yet. I haven't needed that, but I'd rather be prepared.

Good luck.
 
I

If*

fiddlesticks, well I will just have to wear a pair under my fake butt panties, LOL. Seriously someone gave me a pair that have a foam behind.
 
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