I just don't really feel welcome on HW anymore

I know the topic title has "attention-seeking" plastered all over it in 12-inch high, neon, flashing letters and I'm not really sure what to do about that, other than to simply not post it in the first place. I'll see how I feel once I've finished this post.

It's far from a brand new feeling anyway, but it was exacerbated by entering randy's thread and seeing everyone who joined more than 10 years ago unanimously agreeing on how crap the forum is now. One poster complained that it was too 'technical', again something I have no idea what I am meant to feel about. I'm not even sure I know what it means, but if it means what I think it does then I'm afraid I do want expert knowledge and appreciate those who can give it. I had years of being fobbed off with patronising language which tells you absolutely nothing about the disease or the meds we take for it. I had a severe disease course which perhaps could have been mitigated with more knowledge - not all that likely but at least I wouldn't be looking back with bitter regrets right now if I had tried harder earlier on to prevent this disease from genuinely ruining my life long-term.

And that's another thing. I'm obviously too depressing for most people. I've got nothing upbeat or positive to say about my own experiences and my well-wishes to other people sound empty and hollow.

I'll post this. Maybe you can reassure me about my 8000 posts and that I haven't totally wasted hundreds of hours of my life on this site, idk.

NCOT, you are one of the bright spots on this forum today. You are also a wealth of information. Thank you for answering my posts when they otherwise would have been passed by without a response. Even though I've been here a long time, I still need help and reassurance, this disease doesn't give up, but lately, some of the time that I came here for help, I felt like you, unwelcome, like walking into a room and talking but no one would answer, so I do understand how you feel? I am grateful for all the help and advice I do receive at times. Just so you know I appreciate your help and your presence on this board, we need you.

NCOT, thank you for all your responses since I've joined this forum in 2010. Your responses have always been insightful and illuminating. I joined this forum when I was very devastated and felt it was only me who had this weirdest disease. All doctors apart from my GI diagnosed me with all diseases you could think of other than Crohn's. I found in your posts support whether emotional or healthwise, tons of pieces of information and pieces of advice that helped me to manage to cope with this d disease. Tbh, I've always waited for your posts that you dub "lengthy"; I enjoy your style of writing.
NCOT - I really appreciate all your posts and you have to feel proud of yourself that you've helped other Crohnies to find their path in dealing and coping with Crohn's.

NCOT - I am new to this forum and you and so many other "regulars" are what I hang on to when I need hope. Whether or not it is "better or worse" than before is totally irrelevant to me. All I know it is what I need now and your insight (and so many others) has helped arm me with the experience and wisdom I need to help my son as he faces the unknown with a pretty aggressive crown's disease. You time has certainly not been wasted on me - I value it all! THANK YOU - to you and all of the people who post. Together we can find strength in often difficult circumstances that is not very well understood by "non Crohnies."

Hey NCOT....I hope you are feeling a little better. I guess I was having a rough day myself, and over-personalized your post. But I did read Randy's post and I didn't think it was knocking the present day forum. It was just some old friends re-connecting...at least that's how I read it. Are you back home now, or still at your brother's house?

I got really cranky about the stupid herpes virus in my eye and the risk of corneal scarring and blindness. My eye responded to the antiviral medication and I'm doing fine. I just was really annoyed at the idea of having yet another stupid thing wrong with me. The medication gives me bad headaches, which doesn't help. I have one more day of medication and I see the ophthalmologist tomorrow, so hopefully all is fine in my eye and I can "focus" on something else;-)

Hi NCOT, I figured I'd throw my two cents in too. I am extremely appreciative of every post of mine that you reply to especially since I often write novel length posts (forgive me, this one is no exception)and anyone who has taken time to read through it and respond helps so very much. not sure what it's worth but I think I know how you feel to some extent. I'm eating like one solid piece of food a day and the rest are protein drinks and I have times where I can deal with it and others when I just am miserable and want to be able to eat like everyone else. I got criticized by a food server at the hospital cafe while visiting my mother because I was "taking too long to decide what I want" even though he didn't have to wait for me and no one else was waiting. There was nothing there that was "safe" for me to eat and I shouldn't have to explain myself, it's so frustrating, because you feel like you get punished for every darn thing you put in your mouth. I mean McDonald's isn't great for anyone but you should be able to have it once in awhile and enjoy it without having to suffer for it. Even if I don't always comment on your posts I usually read them all and can relate to many of them so I can say that though I have not read all 8000 of your posts I have read quite a few and many have helped me even if it was just knowing some one out there was going through the same thing.
As for what the forum is like, I don't know if my opinion matters that much but, I love all the info I get here. I have found a lot of help here from everyone since I joined in 09. For those that feel up to it, It would be nice to have more humor and off topic stuff as well for those need who need it as an escape. Can it function as both a place for more technical facts/info as well as posts with humorous escapes?

ncot, please don't feel bad. I was merely looking to connect with old posters who no longer post much or at all.... in a few years you will maybe reminisce about todays posters! ;o) all of our feelings are valued and understood. I have been in the exact same position as you many times.. I just have a cheery way of saying bad things maybe? I think we have all felt overwhelmed, ostracized, don't want to go anywhere, cant go out to eat with our families and friends, and most of all ALONE. most times our family does not understand, they are not sick. or they say things like, well "i had a tummy ache last week and I didn't stay in bed" its I hard for others that do not have IBD to get it. so we ***** and moan , so what . we are entitled are we not? sometime when we read only posts about being sick and not feeling well it affects our own feelings, adding despair and hopelessness to what we already feel. that the human experience, we feel others pain and trouble, we wish we could help everyone, but we cant.

I hope you feel better soon and for a long time or forever if that's possible! everyone belongs here whether they post or not, whether they lurk and get help from reading your posts. you nor any of us will ever know how many we have helped by posting our thoughts and gripes.. maybe someone came in and read a post of yours and felt so much better that they just felt they needed not post a reply of thanks?

there have been quite few that got so down from reading about all the hurt and troubles that they left the forum for their own health for good. others just take a break for a while but come back.. I am one of those. I did not get over 6k posts by not spending time here, I admit the first 5k came quickly in a few short years. the last 1k have taken me several years alone.. don't give up your posting your next post may solve someones dilemma for them. they may get the gumption to challenge the gi dr or nurse on how they are treated because of your story.


the bottom line is I think I can speak for the vast majority here, is we all welcome everyones opinion . well unless you have a new "cure" that your trying to sell..


way back in the early years we had many people posting , jokingly, about what put them into remission etc.. for a while it was marshmallow peeps! then orange circus peanuts, etc.. we had a laugh and got on with the task of trying to help each other.

to be honest that's a reason I would take breaks from the forum. I got burned out with my own stuff and didn't want to be randy downer for everyone else. now I am in a better place thanks to a good gi dr, the best ive had in 30 years. some new drugs that help me and and just a better attitude. I have been on antidepressants for more than 16 years, I would not have made it without them some don't work. I'm taking 2 different ones at the moment. had I not been on high doses after the most serious of my sepsis episodes, I would not be here now. I would be pushing up daisy's as they say 2 years later I joined this forum and met other people that got me through. no lie, I literally would have swallowed a bottle of whatever I could have gotten to be rid of it all. I'm choking up just thinking about it. I hated my life at the time, bed ridden, tied to a iv 24/7, having an ostomy.

just know that your feeling ARE valid. we all wish for all of us to be cured some day just stick it out we know you can make it, maybe keep a journal of one good thing that happens everyday. instead of dwelling on the troubles. don't know what else to say ' cyber love and hugs to all.


so again, hang in there, it will pass , you will find joy again in daily life I feel sure of it!

Hi folks. Had an interesting afternoon yesterday. By 'interesting' I mean I had a meltdown at the GP surgery over my 6MP prescription. I've been on the stuff for just over 3 months now and my GP surgery are still barely refusing to prescribe it - I've had my 3rd "emergency" prescription of 7 pills in a row now. I didn't actually plan for a meltdown, I was just so incensed it happened spontaneously. The GP I saw yesterday kept on wittering about how they can't prescribe it without blood tests - if I said it once, I must have said it 20 times: my hospital are responsible for the blood tests/monitoring, not the GP surgery. I still don't think it sunk in. But I was going up to the hospital for a blood test yesterday anyway, so the GP phoned me back to say if the blood tests were all right, they would change my prescription from 7 pills to 28 pills. Except they won't get the blood tests, so this won't be the end of it, I bet.

It's a proper farce and I hate this GP practice. Why I haven't changed is drastically limited availability of other GP practices, but that's another issue. At least I finally got the blood and stool tests done that should have been done last week.

@gumby - The majority of the posts (including the original post!) were fine, it was just one or two which bugged me really. Even at the time I kinda knew I shouldn't let it bother me, but knowing I shouldn't feel a certain way has never, for a single solitary second, stopped me from feeling that way. Hence this thread.

I'm back home now. My stomach played up something wicked on the first day, started settling down on the second day - just as we were due to start the long drive back south. Typical of my life. But I don't regret going, as despite my stomach's best efforts to ruin things I still had quite a nice time.

I fully understand your fear about your eye and going blind - I had exactly the same fear when I had my eye infection. Blindness is a very small risk, but a devastating one if it happens.

@Habs - Er, no, the forum is not full of people "diagnosing each other". Anybody who gave an actual diagnosis on here would be given short shrift. Basically, people with puzzling symptoms which might or might not be Crohn's come on here, trying to find answers, which is completely understandable. We might suggest which tests to have, but what we never say is, "yeah you have Crohn's, sorry about that lol". There's absolutely no way Crohn's can be diagnosed on the basis of internet posts alone: the proper tests are required for a confirmed diagnosis.

On another note, if you want a happier forum may I politely suggest trying to be that happier person? Personally, I am not here to "forget" about my Crohn's, because every time I've been in company in real life I have always been forced to put my Crohn's to one side anyway (or miss social gatherings if I've been simply too ill to do that for a few hours). Except what people in real life don't see is the price I pay afterwards, so I don't have the luxury of forgetting about my Crohn's for even one day. That said, there's no reason at all why Crohn's talk and offtopic threads should be mutually exclusive, and if the offtopic posting was about stuff that I was interested in, I'd join in. But I don't want to be made bad for talking about my disease on a Crohn's forum.

@Labradorite - Welcome to the "taking forever to decide what to eat" club! Even before Crohn's, I probably took longer than normal to make up my mind: now I've developed a reputation amongst my family for it. In my case, I have to factor in cost most of the time too, so that's a triple whammy of indecision. Eating isn't primarily about what I most feel like anymore: it's more about "will item a screw me up slightly less than item b and, if so, is it worth paying two more quid for it?"

Re McDonald's: a chicken sandwich meal doesn't screw me up more than anything else and so I do sometimes have one. Occasionally stretch that to a big mac, but most of the other burgers are too large and indigestible. With my brother though, I should have realised a large breakfast wrap so early in the day (for me at any rate, I usually skip breakfast) was just inviting trouble.

PS: I don't mind reading long posts; I write long enough ones! (if that isn't obvious by now <_<).

@gilsonal - A liquid diet was the one thing I found which did seem to bring forth a bit of sympthy from people. Not sure if sympathy is quite the right word, but at any rate it was the only thing which seemed to make them think for 30 seconds, even if it was only to decide they wouldn't like to have to do it. But yeah, I can fully relate to the feeling resentful whilst not wanting to make my illness visible part :-/

Did the liquid diet work incidentally? It didn't for me, but I was an adult with colitis - liquid diets do seem to work by far the best in children with small bowel disease.

@randy - Check your email ;p

I won't reply all over again, but suffice to say your post wasn't too long and I appreciated the whole thing. It genuinely helped when I read it yesterday - thank you!

@pettitarte - Thank you very much. Thanks to everyone who has replied. I don't want to speak too soon, but my frame of mind does feel better today. I don't want to think about it too deeply in case I plunge back into the slough of despond, but I'm not feeling quite as hopelessly trapped as I was. Things are sh!t, they'll likely carry on being sh!t for quite a long time, but just 'cos it's this way now doesn't mean it will necessarily be this way in five years' time. I guess either I'll find that miracle of miracles - a med which works for me - or I'll have surgery, but one way or another things are not going to stay exactly the same for the rest of my life.

Er, sorry for another novel folks. I'm going over to my parents' now, so you'll get a respite from terrifying long posts for several hours :p

Miranda and Erin.....I love you both and I hope you both decide to stay on HW. This all seems like an argument about nothing, but I'm not feeling great, so maybe I'm just not seeing either of your points. Erin, I don't like to post my e-mail on this site, and I see you don't either. If you have a "spam" e-mail address or anything else you can post so we can keep in touch if you decide to leave HW, then let me know. I'd love to keep in touch with you. I wish I had something profound to say that would make you both feel better, but I still have to work 3 more hours and I'm exhausted today. I think there is and should be room for everyone here. You can ignore posts that irritate you.

HabsHockeyFan said...
Well...I fully expect this to be deleted...but here it is...thanks NCOT...you make me feel unwelcome. We all are different and like different things. However, if we don't do what you want you stomp your feet and tell everyone else they are mean. I understand you have depressive or such issues...but quite frankly you are just being pushy and demanding that we accept your tantrums without ever expressing our own thoughts. Hey we all have issues.
'
I do try to make cheerful comments and helpful items....you apparently don't see that.

Hey I am glad the forum is just what you want....for me it is no longer the same whether you like me saying that or not. Have a wonderful time on here...I find it dry, dull and argumentative.


Gunmby44....I will find a way to try and keep in touch, but this was the last straw for me.

Well luckily (or should that be unluckily - I can't decide :|) it lasted until I got a chance to read it. What can I say? Your assessment of me is probably spot on, apart from the bit about not wanting you to express your own thoughts - feel free to!

No, you're quite right. I don't see that.

I also can't remember the last time there was an argument on this forum before today, so I've either missed a few things or I'm also not seeing what you see.

@gumby - There's no obligation to take sides. I appreciate that you get on well with Habs and that's absolutely fine. I can't expect everybody to like me - only 99.9% of the human race :p (I'm j/k folks.)

@huckleberry - Thank you.

I've no intention of going anywhere and am not trying to drive anybody else away. It actually would be quite nice if this forum could become busier and have a wider range of people posting regularly.

I have already posted earlier but as a new member and new to this disease (having a son dx last year) it is invaluable to me. As a seeker of information I accompany my son to his doctor appointment with lists and lists of questions (45 has been my highest number of questions thus far), speak to anyone who has it or knows someone who does, scour the internet for articles on a daily basis and come here for amazing support. I feel like I just now have a bit of knowledge that I can actually post some answers or insights and hope to do more. Of course people should be able to come and go as they please but from my perspective every person's experience is a link to a medication, an idea, a new drug or just a virtual hug! Thanks for all of you!

well all, this has happened before. some one got upset over a post or two and more than a few people, all good people left the site taking away some awesome insight and good humor. it is easy I think to be upset if anyone disagrees with us or says we are wrong etc.. please for everyones sake maybe we all just take a breath and relax. it will pass. however if you feel the need you can block someones post so that you never have to see them...;o) just a thought.

To everyone, I hope you all decide to stay!
@NCOT in response to your response to me..
I always took awhile before this disease too but i was always interested in trying new things at least once (except I always hated spicy foods so no loss there) I have the same thought process of measuring price and amount of predicted pain I'll be in. The two protein drinks and one solid item is getting me by. Still plenty of pain in the morning and discomfort and bloating for most of the rest of the day. At least I haven't lost any weight.