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Hi Beesom, I read your post and can empathize with you 100%. I know this is sorta lame, but I wanted to get back to you and am tired at the moment. I sent this same post to the Author awhile ago, and meant every word of it to that person as well. I wanted to send it to you also due to it applies the very same way.
I have had Crohn's Disease for a long time, 1987, then 2003-1010 were really eventful and rough. Having Crohn's can be a very lonely feeling, allot of times friends and family just don't get it. So its giving me a real chance to look back, and I never realized on how much of a robot I started turning into, and the tunnel vision. At the same time though, I have always kept a great sense of humor about it all. In '09 I had to get a partialcolectomy and a permanent ostomy. I am playing on a ice hockey team and love ever shift I take. I'm still getting used to my ostomy bag, but it can lead to some great humor if others who don't have IBD are willing to joke about it, some just get silent about it, and I understand. When I'm ice playing hockey, and I have to go to the bathroom. In the old days as we all know, when you gotta go, you really got to go!. With the bag, I can just keep on playing and just go and not miss a shift! I used to be a police officer until I had to retire so to stop working due to the Crohn's was way out of control. I would never pass the medical exam now, so being a cop for now is not realistic.. All is great though, I had a feeling it would come to this, and am still trying to handle he fatique factor and especially getting stronger agian. Let me know how you are doing when you can! Andrew
annagaede, I had looked at your web sight, its really nice and well done. Is it mainly geared to teens with IBD?, just wanted to make sure. Someone asked me once if there was support group for teens with IBD actually? I would be glad to sign on if its for people with IBD of all ages?, my story with Crohn's is long and very eventful, but I am always looking to offer any advice I can that may help someone. I had read that you had a MRI and got to have some of that tasty barium! I have had so much barium in my time that I am pretty much done with that stuff, lol The timing is always the worst to, fasting the night before, no coffee in the morning!, then they hand you that 10 pound cup of that stuff. I got diagnosed with Crohn's when I was 21, that was after a year of knife stabbing pain in my gut. 2003 to 2010 was non stop operations for the Crohn's and now have a partial coloectomy with a permanent ostomy. I have never felt better and just take Humira now and things are nice and quiet and uneventful with the Crohn's. I'm 46 now, but remember vividly when I was first learned that I Crohn's. In 1987, Crohn's was anything but a house hold name. Thanks to CCFA!!, they have created the amount of awareness that exist today! Nevertheless, I was so fired up to go under the the knife, I could not wait! I ate like a horse for a month after I got out, due to I could eat again comfortably to say the least. Hope you are feeling well!, Andrew
I have a website that i am trying to get started as a support group/ resource of info :)
go to http://gotguts.webs.com/ and lets get this website filled with everyone who needs support <3
I read one of your other post and sorta had to write back in support for you what you were saying. I think you were responding to another person? Family and friends when it comes to Crohns or IBD, uggh! I have all but given up on my immediate family even remotely getting it. Like you said, as time goes on its much easier to move on from it. This is a huge issue with people with IBD and its like the last thing you should have to deal with, is explaining why you cant make it to dinner, other family events, and so on. This is even after I would always give them up dates on what was going on, procedures, new medication I am on, another upcoming operation. I think I set my own record for drinking barium! My really good friends were big time understanding from the beginning, and my fellow co workers at my job. There were several times when I ran out of leave, and my fellow brothers and sisters and my police department would donate me leave so I could heal up and not go broke. Dont know what I would have done without them?!. So I found that my friends were the ones who really understood and they were my total support group for me and my now wife. I have had the comments from my family to, not my dad, he totally gets it, but my stepmother, would actually be so judgmental, like you are being selfish by not going to dinner, or are being lazy that type of thinking. She has said so much crazy stuff I lost track. So I have not told her a thing about anything and it was a great relief. Sometimes you just have to put your foot down, when people say whats taking you so long in the bathroom or getting ready? My advice is to be assertive and respectful by saying NO, I am tired and I am in pain. It took me awhile to put my foot down, due to family politics. Looking back I should have done it much earlier. I am just saying all this info because I know allot of people have talked about this, and if any of my thoughts advice can help at all than that is awesome!
Hey there, I have not been on this site in weeks and saw that you had asked how I was doing, and thank you. I wouldnt want to bourdon you with my story, its long and really tough to keep it short. You must have read a older post of mine, if you knew I was on disibilite, so I am glad you read that and you preety much know the poop with my Crohns. How long have you had CD for and have you any operations? When I applyed for disibilite, one the paper work in itself was unreal and really confusing. I think its more just all the anxiety and stress of having I will say in my case sever Crohns and be able to concentrate on gettin all the paper work in. But, I fouund that once you give it the go over a couple times and makes allot of sence and is a great feeling once you get it in. I think mine took about 7 months to get approved, but the hard work was all worth it, due to like you mentioned. I was sent my annuity covering those 7 months. With being out of work and pile of doctor bills, I could not have been better timed. I have know idea what I would have done without the disibilite?, I have never taken it for granted, and it allowed me to make my new full time job of getting the Crohns under control. My wife and I live in the upper mid west, where the temps are not very balmy anymore, lol Upstate NY is awesome by the way!!, I have been to Lake Placid, and all I could think about was 1980!!! My wife was everything when it came to my Crohns with all the wound care changes from being home bound several times. How are you though? hang in there with the disibility!, we were very fortunate to get the annuity to pay all my dr. bills and co -pays, and medications, and on and on and on, lol I have had about 10 operations, so let me know how your CD is, I am always looking to give any advice I may have to a CDer or IBDer, I just made that up, lol
Hi everyone! So I was doing pretty good, and healing up from surgery. Soo... then I finally got myself a doggie! =) =) I've been wanting one since I moved into my house 6 months or so ago! Not very long after I wound up in the hospital with an infection, and bad reaction to the med I was taking... but coming home to my lively 10 month old lab, and having someone to take care of instead of just being the one being taken care of for once was a good change for me! We've been going for walks before and after I go to work, and all of his energy has definitely perked me up on those days when I don't have any other reason to get out of bed. One day a parent of a child that I take care of was feeling bad for me to have to pick her up, and I assured her that wrestling with my 70 pound big pup is a good sign that I'm ready to care for any kid who I took care of before the surgery. He is quite the ladies' man at the dog park too!! I suggested to my boyfriend (who was reluctant about taking on one pup with my unpredictable health status) that maybe our pooch needs a girlfriend at home so that he doesn't feel like a third wheel... and needless to say that's not going to happen (yet!) He gets nervous every time I scan the pet section of craig's list, or go to petfinder.com to see who's out hanging out at the shelters... but I swear I'm just looking! I don't mind being outnumbered by guys in the house... especially when it seems I'm a lucky enough girl that they both shower me with affection <3
I hope that everyone has been feeling well!! Have a happy Thanksgiving!
Somedays I just kick back and listen to the Temptations and I feel better. Just try it. I always feel better.
http://www.youtube.com/watch?v=Z-es4Q8AJaU&feature=BFa&list=PL0ED35E858B514ACF&lf=results_main
I'm 48 years old, divorced, no kids and have had severe Crohn's with numerous surgeries since I was 19. Like PyroZack, I'm on SSI.
My queston is, where do us "Chronies" find dates with this crappy disease when you don't work? And when you do date, it's so stressful! Having to explain why you can eat very few things, can't EVER be more than 3 minutes from a bathroom, why you don't work, why you don't want to sleep over...oh yeah, and the sex thing can be MORTIFYING!
Sometimes I feel like I'll never find love again and desperately miss that feeling. I have great family and friends but I am so lonely!
yuck, shingles. i remember the first time that i learned about shingles... i was volunteering at a nursing home in my early teens, and an elderly lady there had them on her back. she was normally very polite and you know... the "oh hello dear, how are you today? what a dear little outfit you have on today. now would you just be a dear and hand my my wart cream over there and just put a little on my foot for me?" type. but when she had shingles, she just screamed, and moaned all day to the point where my teenage self just couldn't take it any more.
i'm doing really good now. i am cleared to eat whatever i want. i went back to work just 2 weeks after the surgery. i still have an open incision that i have to pack with gauze, but its no biggie.
more importantly.... last night i bought my very first dog of my own!!! =) he is an 11 month old yellow lab, and i'm keeping up with all of his *** and energy as well as i would have before all this crohn's business.
what's crohn's disease again?? oh my... i'm hoping this lasts for a looooong time! ;) my gi doctor said that its typical to expect 5-10 flare free years if i take my meds, watch my stress, don't smoke or drink alcohol.... i'm pretty bad at avoiding stress because i seem to always want to help other people with theirs and it becomes mine, but i handle it pretty well (i usually laugh at it) so i guess i'm okay!!
Hey Never Ending,
Sorry I'm just not getting back to you, I had not made the time to sit down and write and spend some time on the forum. I read your note several days ago that you got your operation done, that is great news! I totally know what you mean about wanting to get our of there and get home. I think it makes a huge difference to get back home and to your own bed. The last time I was in, I could not wait to get back home especially due to getting hospital bed sores. Let alone getting real sleep, by the time you really start to fall asleep, a lab tech walks in and its time to stick out your arm. Like you said though, there totally doing there job, that's why I always do my best to be a role model patient. I try to make jokes to the staff as much as I can, cause I know they have tough jobs. This was not a pleasant thing I just went through, I had a outbreak of Shingles on the right side of my face and forehead!, That was officially painful! I have never had those before, at first I thought it was just a rash and a headache, untill I was looked at. I'm on the tail end of it now, lots of eye dr visits to make sure it was not getting into my eye. My GI dr insisted that I stop the Humira immediately though, so that will be issue that my dr and I will have to figure out? I can really do with out getting shingles again, what a headache, lol How are you healing up?, are you getting you appetite up and are able to walk around more? Can you tie your shoe laces yet?, if so that is always a good sign. That must be bizarre for you going to the bag, getting used to it, then going back to normal. I hope you are feeling stronger and better?, let me know how its going when you can! Congratulations again on getting the operation over with!
Andrew
I had my ileostomy closed a few days ago. The first 3 days were really no fun. I had a lot of pain, and nausea. I almost felt like the CD was back again. I'm starting to feel better now that I'm home, and don't have people poking and pushing on my healing tummy. It sounds bad, but when one of the doctors came in and said the rest of the team was okay with me going home, if I was ready... I mostly said yes because I knew it was the only way to have them leave me alone!! But they were just doing their jobs, so I don't want to be too cranky about it. I kept reading everywhere that I'd have pretty bad diarrhea... but it really hasn't been too bad. (knock on wood)
I'm so ready to get up and be active again... but my body is so not. That's how it goes I guess!
How've you been?
Have you had your operation yet?, I wanted to see how you are doing. UOAA, yeah, that's the big web sight for sure to go to. I looked at the forum they have, it seems really good, and am going to sign up for it definitely. One topic I looked at was called how to control the stoma farts, or any advice on that, something like that though. The way she put her question was completely brilliant and hilarious I had a laughing attack. Certainly anyone with a stoma can relate with, if you read it its priceless. What she said was so true though as far as when farting around people you don't know, like in a elevator, that's the one I always joke about maybe happening. I will let you know on this site what my user name is when I sign up, in the next day or so. I looked at that web sight to find the local support group and found one no problem. Hope you are well, let me know when you can when or if you have had your operation. Talk to you soon,
Hey hfeowwlob,
How goes everything, I have not been on this site in little bit I noticed, how is everything with you? Just waned to let you know, I sent a e-mail to what looks like the correct contact e-mail for this web sight on questions or concerns. I went ahead and explained that you are in fact the one who is the author of this topic. I indicted that we had noticed it and that it was obviously not a big deal. I did say that in fairness to you, especially being its a popular topic if it could be changed to your user name. I'm sure they will fix that. I cant believe that its getting into September all ready, how did that happen so fast. Here in the upper mid-west, you can just start to feel it, like oh boy, its almost show time with the snow., November sure. Last winter was certainly like that, almost hockey season though!
I think I'm glad about getting the ostomy closed.... I'm still a little nervous about it.
I haven't been on any meds since the surgery, but I haven't had any symptoms either since they took out the icky part of my colon. Before the ileostomy, the plan was that if possible they were going to remove my right colon, and reattach my small and (what's left of) large intestine during the same surgery, but after my colonoscopy they weren't sure that the tissue would be healthy enough to reconnect... and since the colorectal surgeon was so unsure, he made the incision where my ileostomy is now... he did the surgery laproscopically. So, the intention was always to have it closed, the ileostomy kind of just let him pause the procedure. Which I'm fine with... just no rewinding!!
Lol... when I first started reading where you wrote about toothpaste and tic tacs in your bag I actually thought to myself "Is this guy for real?!?" Then I read the "Just kidding" part. LOL!
Speaking of things you shouldn't know about before surgery... there is this book by Atul Gawande (I hope I spelled his name right) called Complications... it's about a medical resident, and he writes about all of his, and his colleague's mishaps and close calls... well being so interested in the world of medicine, I wanted to read it. I've had it since right before my first hospitalization, and I read just one chapter... but now being on the other end of the medical world I just can't read anymore of it without getting too freaked out to go back to the hospital again!! Holding the needle out is one thing, holding your arm out for it is another!!
Hey NeverEnding,
I was rambling on about my stuff and wanted to congratulate you again on the decision of getting your ostomy closed. From the post I had just written, I could have led to some pretty wild stories I have had that led me to multiple ER visits. One is really nasty and crazy, actaully two?. I know you are a nurse, but with your operation coming up, I will save them for another time. That's whats great about this forum, is I have never had a chance to tell someone about this insane incident who has Crohn's or IBD. Like I said, not the kinda stuff a person would want to hear before going into the OR. So no more ostomy bags?!, or inflating bags! I usually just squeeze tooth past into my ostomy bag or put a bunch of tick tacks in the bag to get rid of the smell. ..............Just kidding. Its funny, the bags I get from Hollister have these inserted filters and that seems to really do it, so its never really a issue. By the way, my wound was 10 centimeters long and 6 centimeters deep, my wife just reminded me. It took a long tome for it to heal, almost a year. Later that summer after the operation, my surgeon found that it was healing from the outside and in and formed new tunnels. I had to go back to the OR and get the whole wound re-opened again. Now and finally, My butt does not hurt for the first time in so many. I feeling like riding a bike as far a Forest Gump went running sometimes lol! Have a great operation!, I know you know what I mean. I'm sure you cant wait to get it over with. I really hope for you that will be it operation wise. Is there a medication you have been on to have it treat the Crohn's to get it under control, then get the operation? Hope you also can spend as little time in the hospital as possible. Maybe you could bring in a satellite dish and stick it out the window and get some good tv?! Talk to you soon and hope to again before the operation.
I'm glad I went to check out the forum, that's great you have a date set to and you decided what to do. So your gonna get it closed up, that's awesome! I know that had to be a really tough decision, is it that your surgeon thinks that that area has been treated long enough with medication and to go ahead to close it? My colon rectal surgeon, my wife and I talked about getting the temporary ostomy. Its my whole rectal area that was so diseased, lots of fistulas, all the drainage and about 7 operations in that area. Even with the Remicade or Huimira and Imuran, I was gonna loose all control of my bowls. So we went ahead and had my rectum removed, the entire colon on the left side of my gi tract, my ostomy is on the left side. Your a home health care nurse, excellent! When I was on home health, for the 4the separate time, after the coloectomy operation My home health care nurses had a handful. The wound on my stomach was not as bad as the zipper scare that goes all the way across my stomach from the 1987 operation. But, the but wound was rally large and deep I think 11 by 7? Yeah, the wound vac was a pain the in butt, as you said though, they do work, and that's the main thing. Yuk though!, changing the reservoir, and a little noisy at night, especially if it did not have a good seal, and that happened several times. I have to admit, the pain level during wound vac changes was not pleasant. Sometimes the tape would stick to the wound, ouch.
So, this cracked me up, and I totally have to give credit to Lizzie's Mom for this because I found out about it thru her reply to somebody else on this site... funny as it is, it might also be pretty useful... but google Poo~Pourri sometime!!!!
And for Hockey Rocks, since I know you also have an ostomy, did you know that they make doedorants that you can put inside your bag to cut down on odors, and oral pills that supposedly make your waste less offensive? I even re-read thru the stuff they sent home from the hospital with me, and it says you can use a drop of peppermint oil in your bag to smell fresher. I guess we're lucky, because with the apparent exception of Poo~pourri users, everybody's poop stinks!! Everybody comments about the stinky contents of the bag... but at least we are never the culprit of the "silent killer" in the room!! We only empty out anything in the safety of the bathroom! Sometimes I actually think its more convenient!
Anyway, I better get back to what I was doing... I was cleaning my house and when I came across my computer instantly thought "Oh! Look! A cleaning cop out!!!" I hope everyone is enjoying their weekend!!!
What a cool job Michelle!! =) Was it something you always wanted to do, or did it take you awhile to decide what you wanted to do, and then to decide what kind of animals you wanted to work with??
I'm a pediatric home care nurse and I absolutely LOVE it! At first I wasn't even sure that nursing was what I wanted to do. I just knew I didn't want an office, desk, computer, and high heels to wear to work everyday! Then once I decided on nursing school, I became a nursing assistant so I could work part time in the field while I was in school, and most of the opportunities with that were working with the elderly, which I liked, but I still wasn't convinced that it was what I really wanted to do. I was even nervous when we started our peds unit in school, bc before that I really didn't have any experience with children at all, but after shadowing a pedi home care nurse for just one day I knew it was what I wanted to do... and here I am =)
Australia is on the top of my list of one of the places I hope to visit one day. I've heard its soooo beautiful!! Was it hard getting used to being in the US, or has it been same old same old in a new place?
Andrew, I just read your post where you mentioned music... its kind of funny bc I learned (while driving to the ER one time) that if I crank up the old soft rock music that my parents used to listen to ALL the time, and sing along in a silly impersonation type of way its totally distracting, and even in the worst pain I've ever had being driven to the ER its kind of worked for me. I'm sure that it's not a common "technique" and most people probably think its crazy... but hey when it works it works!! My boyfriend usually has to laugh at me, and that only makes it work better =) Until a song that I don't know comes on, and the distraction is gone.
I have dealt with shift work before, nights were the worst! I wasn't diagnosed with CD then though. Now I do home care and my hours are more flexible, which is great for me!!! I took care of a little girl who had a wound vac for awhile... they can be such a pain!!!! But they also really do what they are supposed to, so I like them. I say the same thing about changing the dressing for the vac as I do about ostomies... arts and crafts... Cutting, and pasting.
I've set a date to have the ostomy closed... but its kind of weird, I'm not excited about it like everyone kind of expected me to be. I'm actually pretty nervous. I think that I kind of just associate the ostomy with feeling good since I was doing so bad beforehand, and so much better so immediately afterwards. Part of it is also just being nervous about surgery I guess. Or nervous that it won't work. I know it sounds sooo dumb... but I almost feel the way I'd feel losing my best friend. I just became thankful for my ostomy bc it helped me so much.
Hi all.... this is a great idea. And yes, I wish there was a group...or a few people I knew around me who understood 'me' without even asking. I am an Australian, moved to the USA for work last year. I am a large animal veterinarian and moved here to undertake a residency in Large Animal Internal Medicine. I was diagnosed with crohns during 4 year exams at vet school, after a number of years of problems. I took the news and ran with it, not really understanding any of it....which is kind of weird but I guess I would much rather know about diseases of large animals than humans!!
I am on a constant battle to keep doing what I had hoped to do with my life, and I guess I push the limits. I have always hated anyone knowing that I have crohns, so i wouldn't even tell anyone.... ESPECIALLY the people I work for. The residency program I am in is very hard to get into, so I have tried to hide the real 'me' so much more than ever before. Which is probably the reason I have felt lonlier than ever.
My work here is demanding mentally and physically, 24 hours a day, 7 days a week I have to be with my patients. I LOVE LOVE my job but I constantly crave the person I use to be..... with more spice and energy for life and everything.
Since moving here, I had to eventually tell some people at work when i had to be rushed to an ER. I suffer from an array of extraintestinal manifestations of crohns which at times can be worse than my GI issues.
Wow, without realizing it I have rambled on and on and on..... to my computer. You guys just happen to be out there, whether you read all of this or not.
But one things I am HUGE about is small talk, I am known for my cheeky and dry sense of humor....I just like to make light of any situation that I can! Anyways, I am hoping to visit this site, having only just visited the forum for the first time. Hope everyone is having a great weekend.
Michelle
Thanks for getting back to me, and for the web sight to go to for ostomy talk! That's great you are a nurse, that's means you are all to familiar with shift work :) When I was a police officer, the department I joined up with in 2003, they were still on 12 hour shifts. I started to get used to the 12 hours, but going to work the next day it started to ware on you. I was on the 6am to 6pm shift, so no traffic going to work, but grid lock on the way home, lol, I can laugh now I guess:) It wasn't until later in '03 that the Crohn's came back in a big way. At that point, we were back on 8 hour shifts, so I was thankful about that. After the first surgery for fistula's, it just snow balled into one operation after another. My girlfriend at the time, now my wife, became experts at wound care, especially her! My Crohn's became severe in the rectal area, so I would go home with the wound left open, and it was that routine for I guess around 5 years. Having that wound vac on was not very pleasent, but I got used to it and would do the dishes and laundry, just had to juggle it, :) My Sergeant could always tell when I was really having a hard time half way through the shift, so she would just look at me and I would say I'm fine, good to go, and she would say, Andrew, Go Home! Her aunt had Crohn's so she really understood. In '09, my fiance, myself and my surgeon decided to go for it and get the rectum removed and and most of my colon, and the permanent ostomy, I have 5 feet left. I have been babbling allot, and wanted first and foremost to let you know on I know how much of a huge decision that must be for you coming up. You have a outstanding attitude, and you are right. I know with my ostomy, I am so used to it, its purely part of my routine. Let me know on how it goes and what was decided, lets talk soon. This is really the first time I have been able to talk to someone even via a forum like this about otomy's.
Hi Andrew! I agree about the Gilligan's island reruns! Some humor in the hospital is always appreciated =)
I've had my ileostomy since the end of May, but I'm already so used to it that even though it is supposed to be temporary (I'm supposed to find out next week if/when I'll be able to have the takedown) I wouldn't really be that disappointed to be told that it would have to be permanent. It's just a part of me now =) I think a lot of people fear that when they get an ostomy they will be the odd man out... but truthfully, I've experienced more normalcy with my ileostomy than I did when I was so sick with Crohn's. I don't really have much trouble with my clothing and the bag. I've even worn a bikini the bottom was shorts, and the waistband of the bottom was pretty high, so it covered the whole bag! With shorts and jeans, I usually just tuck the bottom part of the bag into the pants/shorts, and I've worn shirts tucked in or out. Having the bag tucked in gives it a little more support too-I hate when it feels heavy when it starts to get a little full. But since the waistband of your pants keeps things from flowing the whole way down in the bag, you have to just pull the part of your waistband that is in front of your bag out a little bit to let everything fall down. I think it also may have been easier for me to get used to because I'm a nurse, and I've worked with them before... it was just weird getting used to the idea of it being my own.
If you never have yet, check out www.uncoverostomy.com. =) There are a lot of FB groups for Crohn's where I've actually learned some good ostomy tips.Maybe we can start an ostomy secrets thread =) Take care!!
It's great that you're having a good year and I imagine it's comforting to be able to have a sense of humor regarding the procedures you've had! LOL/OMG about your ability to use the bathroom while playing hockey, but I feel BAD for laughing, LOL!
So you use to be a cop! VERY COOL! I have so much respect for the GOOD PEOPLE in law enforcement because I THINK they must have a lot of COURAGE to enter such a profession! It angers me that they seem so underpaid, considering the RISKS they take!
Best wishes regarding your Homeland Security goals and thanks for your advice! :)
Neverending, I'm sorry, you were the one that talked about not liking tv due to all the hospital tv watching, lol, and I had responded to you about that. Anyways, same thing about the wanting to be on a island, I tottaly understand you feelings on that. I have a colostomy and am still getting used the the bag. I am so glad that I got the colectomy, but and still learning what you can and cant do. So far, its amazing how you still can be just as active and try to persue all your goals. Me personally, I'm still trying to figure out how to tuck my shirt in with out getting the bag jammed up or restricted? So I just leave my shirt the untucked casual way, and you cant even notice the bag is there. I dont really care if people see it anyways, its just more of preventing leakage and if I do tuck my shirt in, and it starts to fill up, that where I get nervous. I think you said you have a iliostomy, have you had it long? and I hope it very benificial for you, I know getting my colectomy did huge things for me, and am very used to having it.
Hey Neverending, I had just wanted to let you know that I had just read on how you feel like needing to move to a island when your on prednison. I had been responding to a note a person wrote on how they dont like watching tv much due to all the tv you they would have to watch in the hospital. I had wrote back that I feel the same way about tv, with all the hopital time I have had to put in. I had joked bout how there was never anything on to top it off, and that they might was well show re-runs of Gilligans Island all day, at least it would be something thats funny and to make you laugh. That was in fo referance and just a coincidence that I talked about a tv show about a island, and not at all about how you felt about wanting to go to a island due to the steriods. Just wanted to point that out to make sure, cause I fully understand your feelings on that and that meication is not lousey to be on. I have only had to take it for a few weeks last year after spending 5 days in the hopital due to a Crohn's flar up that caused a blockage in my GI tract. I almost had to get immediate surgery, but 5 days of non stop IV's of steroids, Cipro enabled it to open up my gi tract again. I took prednisone for a few weeks after I got home and started Humira just make sure my intestins were clear.
Anyways, just wanted to make sure, and this is a great forum that the initial person came up with to talk about Crohn's and Colitis.
I saw something you wrote and had to respond quickly to that. I am the same way with tv. Much of the time I just cant watch for leisurely reasons, I have spent a tone of time in the hospital to for Crohn's operation's. One its impossible to get actually sleep in the hospital, and, it seems like there is never anything on. I would prefer it it they just ran re-runs of Gilligan's Island all day and night long, lol
Hi,
I have had Crohn's Disease for a long time, the last 8 years being the roughest. Having Crohn's can be a very lonley feeling, alot of times freind and familly just dont get it. This past year has been my best year in almot a decade. I did not have a operation and or being hospitalized for the first time in a year. So its giving me a real chance to look back, and I never realized on how much of of a robot I started turning into, and the tunnel vision.
At the same time though, I have always kept a great sence of humor about it all. In '09 I had to get a partial colectomy and a permanent ostomy, and it was the best thing. I am playing on a ice hockey team and love ever shift I take. That good you are reaching out to people who have Crohn's and or Colitis, it really makes you feel much less isolated. I'm still getting used to my ostomy bag, but it can lead to some great humor if others who dont have IBD are willing to joke about it, some just get silent about it, and I udnerstand. For example, when I'm playing hockey, and I have to go to the bathroom. In the old days as we all know, when you gotta go, you really got to go. With the bag, if I have to go, I can just keep on playing and not miss a thing, it great. Its really well protected to with all he equipment on, and playing I dont even notice it.
I used to be a police officer untill I had to retire so to stop working due to the Crohn's was way out of control, and that was really tough for me to do becuse police work is in my blood. Police work is proably out though, I would never pass the medical exam. All is great though, I had a feeling it would come to this, so I would love to join Homeland Security at some point. You are very right though!, it can make you feel lonley, so try to keep a sence of humor about it all, and first and formost take care of yourself and tackle the the medical stuff head on so to start to feel better, and I hope you do!
Andree
I totally understand your reasons for coming here, it's great that you've been feeling better lately, and I'm glad you're cool with small talk!
I like your idea! It is nice to just be able to chat about things other than IBD. At first I used to just come to this site b/c I was stressed out about Crohn's, but I've been lucky and feeling pretty good lately, and at one point when I was really really not feeling well, I told myself that I had to come back even when I was feeling better just to let people know how I was doing, because when I wasn't feeling so great I just craved "success stories" and I remember feeling so crummy when I couldn't find posts where people seemed to have been just where I was and came out on top.
Anyway, now I find myself here pretty much whenever I'm bored. Waiting for dinner to be ready, or laundry to be done, you name it. I'm not much for TV at all lately (too much time with it in the hospital I guess!) so I usually end up on the computer when my boyfriend watches TV... so I'm more than happy to participate in small talk!
No need to apologize for your post being totally small talk since small talk is what I crave most at this point in my life! I guess I crave small talk the most because after thinking about, living with, and/or treating Crohn's symptoms almost 24-7, small talk is a comforting way for me to temporarily escape Crohn's, and sometimes I REALLY NEED A CROHN'S ESCAPE!
WORTH NOTING: Since I'm not an IT'S ALL ABOUT MY NEEDS person, despite my small talk craving, I sincerely welcome IBD-related discussions if that's what someone responding to me NEEDS to discuss!
Okay, maybe I get it actually. Is it one of those things that each letter stands for the first letter of a word, and then all the words make a sentence? BC if it is, I think I get it, but if not I'd just feel stupid for guessing. I already feel kind of bad for flooding your thread with 3 posts in a row bc I didn't just get it the first time.
Being put on prednisone for flare ups does not help that feeling either. Every time I'm on prednisone I feel like I should have to move to an island designated just for others on steroids so that nobody else has to deal with emotional prednisone users. Of course, I don't know how anyone would make it out alive and well from such an island. We'd all drive each other even more nuts. So, maybe it's good that we don't get cast away to prednisone island.
wait, wait, wait! SPEAKING of usernames... I always wonder about ones like yours that to me just look like a bunch of letters. I've never asked anyone before, but I figured you did kind of offer it up to be discussed there.
I picked "NeverEnding" just because when I signed up it was the one word that came to mind when thinking about my Crohn's disease... and then I just kind of embraced it.
lol... sorry that this is all on the small talk part, and not really about IBD at all... but I got the chance to ask that question and jumped.
