Making friends while flaring

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beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 9/1/2008 10:51 PM (GMT -6)   
Whenever I read through the forum, I get so envious of the people that had relationships and families prior to their diagnosis.  The support available for people in solid relationships is something that I lack and miss.  I've always been somewhat of a loner, but since the UC struck me, I'm a downright hermit.  It is so easy for me to just stay at home and be sick instead of going out and being sick.  I guess I'm pretty embarassed by the whole gas/diarhea/constant bathroom trips, and I let it keep me from getting out.  I did have a girlfriend during my slow descent into the UC flare life, but we ended up breaking up because she wasn't very tolerant of the stinky gas/gross noises that I was producing.  In the three years since, I've gone on a couple of dates, but the UC seems to get in the way at the wrong times.  What are others doing to make social connections, and how do you manage your UC to allow social activities? 
 
I should say that I'm a young 36 y.o. guy.  Some of my favorite activities, when I can do them include hiking, backpacking, reading, photography, listening to music, and seeing doctors...wait, that isn't a hobby, its just what I spend an awful lot of time doing. lol


Brandon
 
Diagnosed w/ moderate UC in May '06, had symptoms for years prior to dx - currently flaring
Taking Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, and fexofenadine for allergies

Post Edited (beartooth) : 9/1/2008 11:19:57 PM (GMT-6)


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 9/1/2008 11:00 PM (GMT -6)   
There are also posts of those that are going through break ups as well (thinking of susiebuddy), but IBD or not, these things happen and usually it's for the best, my motto is, it's better not to be in a relationship if it's not healthy...of course every relationship has it's ups and downs but if it's causing more grief than good it's simply not worth your health...if you can love being by yourself that's number 1 important because honestly in this world you can only trust yourself 100% and not anyone eles.

The right person will come at the right time, it's a mystery as to who and when that will be...but I wouldn't get too hung up over it so long as you enjoy you and your family and friends.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 9/1/2008 11:31 PM (GMT -6)   
PB4,

Thank you for the advice and reassuring me that there is someone for me out there. I agree with you about everyone goes through break-ups and I'm better off without an unhealthy relationship, and trusting and loving myself. As for enjoying family and friends, that is where my isolation is coming from. I live in CO and all of my immediate family live on the West Coast. I spent most of the last 6 years doing summer seasonal work in Yellowstone NP, then going elsewhere for the winter. I moved to Colorado a year ago because I knew that if I didn't relearn some social skills and meet some people, I'd truly become a hermit in the park. I picked Colorado because of the access to outdoors fun, and the variety of people. Prior to my work in YNP, I lived in Oregon, and the few friends I have there I cherish, but it is kind of hard to call one of them up and see if they want to catch a movie with me.
Brandon
 
Diagnosed w/ moderate UC in May '06, had symptoms for years prior to dx - currently flaring
Taking Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, and fexofenadine for allergies


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 9/1/2008 11:50 PM (GMT -6)   
Aw Brandon ((((((((HUGS))))))) Isolation is tough when you're living in a new place that doesn't have your friends and family at arms length, a challange for sure but reach into your inner confidence and you will conquer, do not allow this disease to control of every aspect of your life especially when it comes to meeting people...connect with those from work, find IBD support groups in your area.

It comes down to embracing who you are (disease or not) and putting yourself out there and I'm 100% confident that you will make many many new friends...and even find that special someone.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


saskia
Regular Member


Date Joined Dec 2007
Total Posts : 31
   Posted 9/3/2008 12:55 PM (GMT -6)   

it is not easy dealing with the embarassment.  One incident gave me a little perspective.  I was having lunch with colleagues who work in another city.  I had to go to the bathroom twice during this time (within a 90 minute span of time). No one remarked on this.  Just before we began lunch, one of my colleagues stabbed his finger with a glucose metre, then roll up his sleeve and inject himself with insulin.  No one remarked on this.  Polite, informed grown-ups understand that there are many chronic conditions out there that require people have to do things a bit a outside of the norm.  They quietly let people retain their dignity and get on with it.  I am sure there are plenty of polite, informed grown-ups where you live.  By the way, we all had a very enjoyable lunch.

One more thing,  you post shows you have a sense of humour.  That's a hugely attractive quality.


*saskia*
pan colitis (diag: Nov 05)
Meds: salofalk7 to 10 tabs/day depending on disease status; imuran 75mg/day; entocort when flaring; cortifoam when flaring; pantoloc; VSL#3; vitamin D and calcium; fosomax


emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 9/3/2008 2:26 PM (GMT -6)   
Brandon,

The empathy you've shown me and the humor in your posts indeed show you to have very attractive qualities! Now, having heard you say that all your immediate family is on the West Coast, and that you have cherished friends in Oregon, why not consider a move back to Oregon? There's so much to be said for being near the ones you love. My family is all in Oregon, and I miss them here in Montana (and could use their help now that I'm sick).

Hang in there --
emory
40 years old and female
Dx ulcerative proctitis June 2008 (after 5 weeks of blood and mucous) and still flaring
Canasa 1000 mg suppositories nightly, 25 mg hydrocortisone suppositories in a.m.
Effexor 37.5, Clonazepam .5 mg and Trazodone 50 mg for sleep
2.5 mg methimazole for thyroid
Osteopenia (and I haven't even taken steroids!)


Luna0
Regular Member


Date Joined Jul 2008
Total Posts : 83
   Posted 9/3/2008 8:56 PM (GMT -6)   
Tell ya what. You got people here to help ya out. Never underestimate the power of a social networking. There are some things I can type to people that I would never say to them in person. For fear that I have to hear them cry or laugh (out of confusion). This really did happen. Someone did laugh when I told them I was on remicade every 7 weeks. Not the good kind either. Anyway moral of the story, social networking rocks. And you'll will find someone some day. Someone who is far better then any normal girl you would have met had you not been sick. It will be a powerful relationship.
Tawn 
18 years old, College Student ~WAHOO GO CATS=)
 
Diagnosed in 2004
Currently on:
Remicade
Imuran 3pills/day
And many other over the counter meds.


emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 9/3/2008 9:28 PM (GMT -6)   
Tawn, I wish I had half your wisdom at twice your age. Well said!
emory
40 years old and female
Dx ulcerative proctitis June 2008 (after 5 weeks of blood and mucous) and still flaring
Canasa 1000 mg suppositories nightly, 25 mg hydrocortisone suppositories in a.m.
Effexor 37.5, Clonazepam .5 mg and Trazodone 50 mg for sleep
2.5 mg methimazole for thyroid
Osteopenia (and I haven't even taken steroids!)


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 9/4/2008 2:52 AM (GMT -6)   
I'm from the Crohn's forum, but I thought I'd join in, Brandon, because I'm young too (younger than you) and severely socially isolated after flaring and being fairly housebound for most of this century.

I won't say I have any easy answers, but I can say that the few friends I've made since I've been ill have been made by choosing an activity (in my case, church) and sticking to it through severe illness, even if it just means maintaining an interest in the congregation and getting visits from the priest at home. I do have a small circle of people who care about me now. I'm sad because I don't have the energy or mobility to deepen the relationship with them as much as I'd like to, but I value them tremendously and they do help me to feel less alone ini the world.

Here are a few ideas to think about:
* Are you religious, or questioning? A lot of congregations try to maintain an ethos of care and understanding, so you might be able to make some good friends just by going to a church service (when you feel up to it), or going to a Bible study or discussion group
* a book club might also be a good place to start, as these involve sitting instead of being active, and are often held in cafes or homes, where there's easy access to a bathroom
* a chess club? Once again, these are held inside and are sedentary
* my best friend's brother made most of his friends by sitting in a cafe regularly, and very obviously reading an interesting book. The other regulars started talking to him, using his book as a conversation-opener, and suddenly he had lots of friends.
* you're an outdoorsy sort of person, so the local Scouts would probably be eager to have you as a volunteer, either at the weekly troop meetings, or as a home-based mentor for the kids working for Eagle Scout / Gold Award.
* there might also be a field naturalists (or similar) group in your area. You may not be up to taking field trips right now, but you might be able to manage to get to the occasional group meeting or lecture.

I do feel for you, Brandon, and I hope things improve for you soon.

Ivy.
Co-Moderator Crohn's Forum.


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 9/4/2008 4:37 PM (GMT -6)   
My thanks to everyone who offered support and suggestions.  Right now, the hardest thing for me is that I'm not as able to get out hiking and backpacking like I have in the past.  That was always my release and social activity, or at least kept me distracted enough that I wasn't worried anything else except where I was going the next weekend.  Having UC has seriously curtailed my
ability to get out, as well wiped out any extra energy or enthusiasm I had.  Seems like it is all I can do to make it to work, and that can be a challenge at times.  The rest of the time I'm either asleep, thinking about sleep, in the bathroom, or thinking about going to the bathroom. 
 
I'll take some advice and use all the online social networking I can, and I'll get through this.  It is hard to not focus on this illness, but it is the people here who are giving me inspiration and motivation, as well as the knowledge that a normal life is possible.  I just need patience, and to accept that I have an illness, but that doesn't mean it is the end of the world.  Thanks again all.
Brandon
 
Diagnosed w/ moderate UC in May '06, had symptoms for years prior to dx - currently flaring
Taking Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda


emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 9/4/2008 9:24 PM (GMT -6)   
Brandon, I'm totally with you on the hiking and backpacking thing. I love being out on the weekend. We have a five-year-old, so backpacking has been limited for me for quite a while, but I still long to get in the backcountry and love a good hike. This summer I've barely had energy for car camping, and just this weekend, I found myself exhausted by a mile hike uphill to a lookout. It's hard on my marriage, too, because the backcountry is the most important thing to my husband (he loves mountaineering) and he feels held back by me. Of course I send him off whenever he wants to go somewhere, but I'd much rather be with him. That's always been a time when we can really talk.

I'm also having a hard time right now finding any time for joy. I love to read, and I can't even seem to do that. It's all about getting myself through the morning, getting my daughter to school, dragging to work, figuring out dinner, taking my meds, hoping I'll sleep... It IS hard not to focus on this illness. I'm keeping my sights set on remission.

You may have had your fill of suggestions, but you live in a beautiful place, and you don't necessarily have to be moving through that space to find solace in the wild. Do you have opportunities for short hikes to a lake, where you could maybe sit and read for a while? Or sit by a stream? Or hang out with some birders? Anything to get outside.

Yoga is another activity that might be of help. I've made some new friends that way, kept fit (though lately I can barely do a gentle yoga class), and relieved stress. Been doing it off and on since 1991. It can really be amazing.

Take good care, Brandon --
emory
40 years old and female
Dx ulcerative proctitis June 2008 (after 5 weeks of blood and mucous) and still flaring
Canasa 1000 mg suppositories nightly, 25 mg hydrocortisone suppositories in a.m.
Effexor 37.5, Clonazepam .5 mg and Trazodone 50 mg for sleep
2.5 mg methimazole for thyroid
Osteopenia (and I haven't even taken steroids!)


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 9/4/2008 9:43 PM (GMT -6)   
Hi Brandon! I'm from the crohns board too but wanted to chime in here because I've lived some of your experience. You and I share a lot of the same interests but unfortunatly (for you lol) I live on the opposite coast and am married.

That said, I did have the benefit of being in a relationship with my now husband before diagnosis but I had just moved to a new state, started a new job, and had no friends or family (except my husband) in my new location. Now you are probably thinking "yeah but you had your husband to hang out with." Nope. He was a cop and I was a corrections officer and we had completely opposite shifts. So if I ever wanted to leave the house not alone, I needed to make new friends.

The easiest place for me to make friends was work. We obviously had stuff to talk about outside of work. The problem was the initial hang out is usually "lets get a drink or food." But I had totally quit drinking and was on a super limited diet at the time. But, I would go, hang out and drive people. I would have a water or soda in my hand so I didn't feel out of place. And I danced like I was drunk and had a GREAT time. No one really even knew I was sober.

But what really lessened my anxieties was having people know about my issues up front. Given the nature of my job I had to tell my coworkers because I needed their coverage before I could run to the bathroom. So when invited out I'd say, sure, depending on how I'm feeling, and they would understand.

Then I quit my job and started a new job. Then I quit that and went to law school. Each time having to make new friends. For me, I just put it out there. Not graphic. Just "Do you mind if I have the aisle seat? I have crohns and need to be able to get out to use the restroom?" Once I knew they knew I was so much more at ease. No more "what if I have to go to the bathroom."

Also, the number one thing that helped me get out of my apartment was getting the courage to go places alone. As a young female I realized I wouldn't be bar hopping. But, I took up many other healthier hobbies. I started doing nature photography. The first time you drive around your new location you see all the beauty that the locals take for granted daily. Soak that up. It doesn't last long before you become a local too. I would go to the library to read instead of reading on my couch. I'd go get a bagel and eat alone at the coffee shop. I would bike the local bike trail with the bathrooms. I even think I went and saw a movie once alone and went on a couple ski trips alone. You can always meet people on the lifts and there are bathrooms in each lodge! Nothing gets you down the mountain faster than the urge to poop. Once you realize it is ok to be out there alone you will be much more confident. With that confidence might come the courage to talk to people.

Oh, I also volunteered at the humane society as a dog walker and I joined a church choir because I missed singing (even though I'm not super religous). You can meet TONS of people walking around town with a dog or going to a dog group. Borrow one if you don't have one. Everyone wants to pet it, chat about their dog, and then you set up a dog play date. Yay! 2 new friends, one just has 4 feet.
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4201
   Posted 9/5/2008 8:19 PM (GMT -6)   
Hi Brandon,

I would totally hang out with you if I was in Colorado! (I love CO, by the way). I love hiking, reading, listening to music and being outdoors, too.

I can totally relate to your situation. I am somewhat of a loner, too. I always just had a few close friends, but now they all live far away from me. When I first got UC, I had been in a 6 year relationship but it was already sort of disintegrating. Now, he's not even really talking to me anymore, so it is really hard because he was my best friend and I spent most of my time with him. Plus, my family is all really far away. I've been having a heck of a time meeting new friends since graduating college, even though I'm not flaring that badly, so it must be even harder if you're in a bad flare. I've met a few people at work but haven't formed any close friendships.

Once your flare settles down, could you try joining a hiking club to meet people with similar interests? Not sure if you would be into it, but are there any book clubs in your area? Maybe you could take a college course that interests you if there is a college nearby. Even if you just meet one person that you don't necessarily have a lot in common with, that person may introduce you to their friends. I'm sorry I don't really have much advice, since I'm kind of in a similar spot right now.
Diagnosed with UC March 2007; Asacol 4 tablets 3x/day; Rowasa nightly; Canasa weekly; Viactiv; Metamucil wafers; multivitamin


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 9/7/2008 1:01 PM (GMT -6)   
Brandon,

I totally understand. I also have been a bit of loner and now a hermit due to DD. I barely made any friends in college b/c I only had enough energy to go to classes. I realized that my high school friends weren't the really good friends that I thought them to be.
Anyway, I hope you start feeling better so you have the option of going out.
Female, Age 19
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (3 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort
 


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 9/7/2008 8:04 PM (GMT -6)   
Thanks ComedyDork. I'm so sorry to hear that someone so young is going through the same stuff I'm dealing with. I've been doing some thinking lately, and I believe I've allowed myself to be so afraid of public embarassment (from an accident) that I'd rather not go out and risk it. I'm hoping that I've reached the nastiest part of my flare and that things will start looking up soon, because I'm ready to start living again.
Brandon
 
Diagnosed w/ moderate UC in May '06, had symptoms for years prior to dx - currently flaring
Taking Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 9/7/2008 9:10 PM (GMT -6)   
My husband's family has a home in Estes Park, and they love nothing better than driving around, and around, and around Rocky Mountain National Park (not the hiking type, I guess) looking at animals, which is TORTURE for me. My husband knows I have a good time when we find a place in the park to just hang out, near a cold stream or to have a little picnic, watch the chipmunks, enjoy nature, and the public toilets are just 50 yards away!
I love to be outside, and I'll probably die from skin cancer before I would of anything related to this disease!
But I get my exercise in a home gym, then feel can move around outside as much or as little as I want, don't need to do it for the exercise.
Anyway, I remember when I found myself alone when my first marriage ended. I was alone but not lonely, and gave myself plenty of time to enjoy the peace of being alone before I ventured out again. So don't think you need to get out there just because you should, do it when you want to and you feel ready. Give yourself a break!

Then, I liked FitzyK23's advice. She sounds like me when I was between marriages! I moved across the country by myself and did a lot of things alone and was very satisfied with my life.
Except, I never tell people about my illness. It's just not a very dignified disease and I would rather people not be picturing in their minds what I go through. I avoid auditoriums and activities that involve standing in lines, etc. There's still plenty to do.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA maintenance for 20+ years, usually 3 pills 2x day. 
Currently tapering OFF presnisone from lingering flare;
August 2008 sought care of naturopathic doctor. Tested gluten intolerant and started gluten-free, soy-free, etc. diet which resolved flare. Also Replete probiotic, DGL (licorice root, slippery elm), Permeability Factors. Slow-release iron and B-12 shots for severe anemia.
 

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