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This is a rant...a loud and noisy one. 

For those of you who know me, who have followed some of my posts or for whom I have been lucky enough to answer and maybe given a kind or informative response to, you may have noticed my sudden absence. 

I claimed that it was work, but that was not true. I claimed that I was busy, but that was not true either. 

I was hiding. I was in pain and hurting.

This site has given me so much love and help. It has allowed me to survive in my blackest moments. It (and all of you) have given me the courage to fight the good fight and the best advice that anyone could give...When no one else was giving me any at all. 

I have been a member of this site since the early 2000's, going through hell and back with only you to talk to in the wee hours of the night when the pain and terror were my only companions. 

I thought of you all as a family, my family.

But a few months back, I got attacked by a newbie on the site. I was not just criticized but fustigated. I was accused of being mean, a troll, of not really having a k pouch at all, of pretending to be 'one of us', of lying quite simply about who and what I am...they even attacked the fact that I live in Paris, as if living in Paris is any better or worse than living anywhere else. 

I received nasty PMs that went on for pages. accusing, criticizing, and basically telling me to get off of this site, that I do not belong here, that I do not understand anyone or what they have or are suffering. 

I tried to be diplomatic, kind, and understanding. I even pretended that it didn't hurt and that I did not care.

But I do and did. So, I went away and hid.

And cried a lot. 

I cannot live in fear of criticism. I cannot pretend that I do not need all of you. 

So, I have come back, if you will allow me to...

Sharon

 

Original Post

You were / still are a tremendous help to me when I was a newbie with a J-pouch.  I'm not on this site much nowadays, because my pouch no longer defines me and I don't remember any useful advice to offer newbies or those with complications.  I think of you often and mremember you kindly, as I'm sure many others do on this site.  But, I get it... one bad apple can spoil it for the whole bunch.  That's a reflection on their character, not yours.

Thank you so much both of you...anyone who goes through something like we have can help others in their own way. Some do home visits, others do hospital visits or take food to people. I am far away so I write. I try to help and if I can I feel like all of the pain was 'useful'...maybe I can prevent someone else from going through the same or maybe just give them the advice or kind words needed to make it through the night.

Never hesitate to ask or PM me if you ever need a hand-hold or any advice that I might (or might not be) qualified to give...sometimes experience and imagination can make up for a lack of medical studies...

Sharon

Dear Sharon, 

I don't know who hurt you, but know that I value your posts very much.  You are always a voice of calm reason when things begin to swirl out of control. Please continue to give your wise advice and comments.  I need them! So do many other people on this site.  I'm always impressed with the wisdom you share.  You've been through more than anyone I know, yet you are still fighting and haven't given up.  I need that spirit to keep going when life throws too many lemons and too little lemonade.

So please don't stop posting!! Keep giving your wise caring advise!!

Thank you so much...I think that age, experience, and a tendency not to panic helps...also, undying optimism gets me through a lot of things.

I am now responsible for over 1000 students at my MBA school...55% girls. 

I started a non-profit association for the girls...To give them a safe place to come and talk, share their experiences and fears and to push them gently out of the nest and into the real world.

Every lunchtime we meet and share, different classes, different specialties but the same problems...many suffer from undiagnosed health issues, most do not even bother to get a diagnosis. 

We were planning to go to Miami in June...I was taking 15 Masters 2 students for their graduation...COVID caboshed that trip...but we are hoping to go next year if all goes well...

I love people, I love helping and if I can do something to make people's lives better than I am happy.

Sharon

 

I am sorry to hear to had to go through this.  There's no reason that anyone should accuse and demean others.  Clearly they must have the issue.  I have been on this site since 2014 or so.  I agree the people on this site are life savers and know us like no other.  I have learned so much and from u.  I have read ur story and u have been thru hell and back like most of us had.  This disease and the surgeries is No Joke.  Take heart,  it was the right thing to come back u can't let anyone take your Joy and keep u from people who truly care.  Welcome Back!! 

Sharon, I am so sorry to hear about this. I also have been absent, but it is truly because of being busy with the trappings of life. I will send you a private message because I need to know more about this person who harassed you publicly and privately. 

I know it is easy to say these types of attacks do not matter or define who we are, but it is still harmful and absolutely not tolerated. Some people relish a public debate that others find distracting at best and horrifying at worst. But, it is selfish on their part and makes for an unwelcoming space for people who just need compassion and information. 

I am glad you are back and I will try to get to the bottom of this.

Take care, Jan

@skn69 posted:

This is a rant...a loud and noisy one. 

For those of you who know me, who have followed some of my posts or for whom I have been lucky enough to answer and maybe given a kind or informative response to, you may have noticed my sudden absence. 

I claimed that it was work, but that was not true. I claimed that I was busy, but that was not true either. 

I was hiding. I was in pain and hurting.

This site has given me so much love and help. It has allowed me to survive in my blackest moments. It (and all of you) have given me the courage to fight the good fight and the best advice that anyone could give...When no one else was giving me any at all. 

I have been a member of this site since the early 2000's, going through hell and back with only you to talk to in the wee hours of the night when the pain and terror were my only companions. 

I thought of you all as a family, my family.

But a few months back, I got attacked by a newbie on the site. I was not just criticized but fustigated. I was accused of being mean, a troll, of not really having a k pouch at all, of pretending to be 'one of us', of lying quite simply about who and what I am...they even attacked the fact that I live in Paris, as if living in Paris is any better or worse than living anywhere else. 

I received nasty PMs that went on for pages. accusing, criticizing, and basically telling me to get off of this site, that I do not belong here, that I do not understand anyone or what they have or are suffering. 

I tried to be diplomatic, kind, and understanding. I even pretended that it didn't hurt and that I did not care.

But I do and did. So, I went away and hid.

And cried a lot. 

I cannot live in fear of criticism. I cannot pretend that I do not need all of you. 

So, I have come back, if you will allow me to...

Sharon

 

Sharon

Sorry to hear you were trolled to that point!

I’m rarely on this site anymore as my issues are pretty minor and manageable at least for the present. (Generally the only time I visit is when I receive a request for comment from a survey requesting input). However I want to say I will never forget the support I received during my dark days!

When I do look back I always check to see if you and Jan Dollar are still with the group as you guys gave me support in the early days! When I see you guys are still here it gives me comfort to know if I have an issue I can come back and be amongst friends. So hopefully you will continue with the group as support takes many forms and is so important for healing and learning to cope with our reality.

Surgeries 2007, 2008 with takedown August 31, 2009. Currently live near Ottawa, Ont. (a fellow Canuck).

 

 

Hi Lew, 

Nice to hear that you are busy 'Living'...that is the whole point of these surgeries, to be able to live our lives and forget our pouches. 

I am doing fine, covid permitting, I will be going back to teaching this fall, 5 sections, over 16 classes plus gobs of work...so I am keeping busy and hoping to up my game on international teaching (covid permitting) again in the coming year. 

I know that Canada has one of the lowest infection rates and I sincerely hope that you and your family are safe from infection or harm.

Stay safe and happy...

Sharon

This is insane. Who would ever join a site to pretend to have health issues? What a crazy thing to think. Good god even if you were strange enough to come up with a thought like that,  who would risk being cruel to someone who in their mind is faking, if it were at all possible they really are going through such horrible suffering? Even if someone were faking that would just mean they are desperately ill and need sympathy not attacked. Personally it is comforting knowing I’m not the only person dealing with multiple serious medical issues. I remember when I was told I had interstitial cystitis and not constant bladder infections. My first response was, that can’t be I already had a serious illness. It turns out that it is common for one disease to lead to another one. It’s like any machine. If one thing breaks then all sorts of other parts can break to. I don’t usually comment but I had to speak up on this. You can say whatever you want on here except mean things to someone else. If you do that than your the one that doesn’t understand what really sick people go through. Keep your head up and keep pressing on.

Thanks LtlBird, 

I know what you mean...when you have a major disease, you should get a 'get out of jail for free' card on all of the others, have automatic immunity on things like the measles or mumps and not have to break bones or have accidents. We have already paid our dues, why must we get more pain?

I agree with the rest too. 

A newbie had posted on some issues that appeared to me to be related to stress or PTSD and was spinning her wheels writing extremely long and detailed posts about hygiene and odor...after a lot of very kind and nice people gave support and opinions that she blew off I said that maybe she needed to also address the extreme stress that having this illness and disease can cause and the possible PTSD that most of us have suffered at one point or other in our disease-lifecycle.

I should not have gone there, I guess. I got a thermo-nuclear response and then it just went downhill...Every post that I answered she came after me contradicting and criticizing everything that I said (including on the K pouch korner...she has a J), PMing me with 6-page rants on how I know nothing, that I must be a troll like the one (or maybe the same one) on her previous site and that I must never have been ill or had a pouch or even know what one is...etc.

You get it...I tried to say that I am often wrong, not a doctor or medical professional but a Kpoucher with over 40yrs of experience in living with this thing and doing my best to help others...

I got 6 more pages.

I gave up. I just said that I was sorry that she felt that way, wished her a better life, and blocked her.

There are too many of us here who suffer (and I am not saying that she is not suffering) to waste time hurting others. We have our opinions and experiences and spend our precious downtime trying hard to help newbies and oldbies get past the hard bumps. Some of us cry, just because we can't take the pain any longer, others offer a shoulder for them and help with tricks and hints on how to survive as best we can.

So, I hid. I ran. I cried because this site and the people on it are so precious and a family to me. The only family that understands. The one that we tell our pains, triumphs and sorrows to. 

I was wrong...I should have told Jan sooner, sent her the messages and asked for help (not something that comes easily to me)...I did eventually and I am glad that I did. 

Thanks for caring...stay well.

Sharon

 

 

 

Hi Sharon

Sounds like you are in a good place, happy to hear! This COVID thing sure has us all concerned regardless of where we live (at least most of us)!

it’s a little easier for us to stay safe as we moved to a small town outside of Ottawa as I am retired now. Since we have been unable to travel Internationally this year we are living at the cottage and throwing the savings into “that money pit” to finally finish it the way we’ve always wanted it. Have a great summer and take care of you!

Sharon,

I finally have a diagnosis for the rectal pain. I hope the doctor is right. I’m getting Botox injections next week. I’ll tell everyone I know, including doctors so they can help other people. For some reason having your rectum removed triggers this problem. I’ve been going to doctors for years getting surgeries, neuro stimulaters and injection trying to stop this constant pain. I’ll know hopefully by the end of next week if this is it. There is always hope.

Have positive day,

Little Bird

 

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