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Posted 12/12/2013 10:45 PM (GMT 0)

I read through the posts on dignity and the other one about someone getting kicked off or something for improper posts (which now appears to be gone).  Everyone, particularly those that think this forum should be something other than what it is, need to keep in mind that this forum is very very useful and important and helpful  particularly to those of us who are new to this disease. 

This disease is so hard to understand and accept and even harder to have your friends and family understand and accept.  The doctors don't seem to want to spend the time with you to really discuuss the issues and everyday and every new drug or treatment seems to bring new surprises. 

I have found this forum to be unbelieveably helpful to me in understanding the various strange symptoms I have experienced, the reactions I have had from friends and the way I have been treated by some doctors.  Also, seeing that others can talk about such matters that I always looked at as undignified and humiliating functions such as our "poop" is helpful.  It took me over two years to even admit to my sister (with whom I am very close and who works in an endoscopy lab) that the "poop" was squeezing out of my rectum at times and I could not control it. 

I have found this forum useful for venting, reading others vents, sharing information about experiences and sharing info about new drugs or treatments. 

So for anyone who does not like what is on this forum, my suggestions would be to just stay away.

Posted 12/12/2013 11:06 PM (GMT 0)
This is one of the reasons I have stayed on here as long I have :)
Posted 12/13/2013 2:35 AM (GMT 0)
I am happy you've enjoyed having this as an outlet. I feel the same way, UC is not something that's easy for other people to understand and it's hard to talk about becuase it's embarrassing. I don't know what I would do without you guys.
Posted 12/13/2013 5:00 AM (GMT 0)
Carl, You are forgiven, and you did not cause me undue distress. I just wanted to express my opinion that this is a very valuable resource. Perhaps I went a little overboard, but just came from a colonoscopy from a doctor I cannot stand as he treats me like an undisciplined noncomplying child when all I would like to get from him is some understanding of what is happening and why. Having seen others express similar feelings on this site has been helpful to me. You must be a good friend if you are going to this extent to try to help your friend.
Posted 12/13/2013 5:05 AM (GMT 0)
i agree, although i dont post on here often anymore.. it has always been a place to go to when i needed answers, help and support.
marty
Posted 12/13/2013 5:13 AM (GMT 0)
I agree totally. I'm new (to this, and here) as well and I thought I was going crazy that I couldn't control my bowels to make it to the bathroom and keep my underwear clean. The fact that everyone is so open around here made me realize that yes, I'm still normal.. just UC (UP) normal! With all my questions, sometimes ridiculous, there is always someone with an answer, or a reminder to chill the heck out!
Posted 12/13/2013 5:28 AM (GMT 0)
i LOVE this forum, too. i honestly think things would be so different for me if i hadn't come on here back in 2011. this disease is totally isolating and being able to come on here and see that everyone else deals with the same crap makes me feel like i have a UC family.

i agree with you, callah. we are normal, just UC normal! except, soystud. he's always been weird- UC weird.
Posted 12/13/2013 2:15 PM (GMT 0)
I have been here quite a while too and keep coming back because even though I'm in remission, I always hope I have input to offer that will help someone else. And, I get lots of good info too. Remember the change in Asacol? I wouldn't have known about it until I read it here. Because of that I was ahead of the game, and was able to get my meds changed right away. So good stuff happens here! Thanks to everyone...HW is a family!
Posted 12/13/2013 2:21 PM (GMT 0)
To defend the doctors, just a little bit. They are human beings too and they decided on this career and took an oath to help people and then they get patients like us coming in with a chronic disease that has no cure and I bet many of them get frustrated because they just don't know what to do to help us and that it may sometimes be depressing for them as well because some of them may feel like they have failed some of us.
Posted 12/13/2013 2:42 PM (GMT 0)
:-)
Posted 12/13/2013 4:46 PM (GMT 0)
Gary, I do see your point about the doctors. I often try to imagine how they feel. I imagine they are totally burned out. But, on the other hand, they chose the occupation and they are making big big bucks. They should treat us with respect and answer our questions. I they are too burned out to do so they have a number of option:
1. retire
2. do something else
3. have someone else interface with the patient as I have seen a number of specialists with no bedside manner do. They do the surgery andlet their helpers talk to the patients and answer questions.

We would all be fired from our jobs if we treated people the way some of these doctors seem to be treating some of us.

Just my opinion, of course.
Posted 12/13/2013 4:47 PM (GMT 0)
I love having this forum to come look at! It was suggested to me right when I needed it most! So so so greatful!

My husband was just commenting last night how much better IV been coping since joining HW....

Thanks guys!
Posted 12/13/2013 4:52 PM (GMT 0)
Happy day... I'm right there with you on the annoyance of No Bedside Manner of Colorectal Surgeons. After my colonoscopy w/ Dr No Personality... I did followup with her too. A surgeon as my primary GI doctor? Huh what?!

She was TERRIBLE. and mean. And not knowledgeable.
As a newbie to the disease... I didn't realize I should get referred to a real Gastro or even Internist... anything would have been better than Staying Sick and dealing with that $!#*^ ! After 5 months I finally fired her.

Someone should have told me... I dont know... anything! and she should have referred me on if she wasn't going to be able to help me.


/rant
Posted 12/13/2013 5:44 PM (GMT 0)
Katie:

I hope you can find a good GI docotor when you get insurance in January.  It is sooooo importtant and there are some good ones out there.  I had one like you described when first diagnosed.  Then found a really good one who talked to me and explained things.  Unfortunately, she moved to Florida.  I got transferred to someone else in the practice, who I do not get along with - he is knowledgable, but in my opinion, he is overloaded as he took on all her patients and he is burned out.  To switch now would be difficult, but I will eventually when the time is right.

Maybe the people on this forum can recommend someone good.  I got a few very good referrals from a member.  Good luck to you.  You are way to young to have to live like this without a good doc helping you.   

 

Posted 12/13/2013 5:46 PM (GMT 0)
Hey, I didn't want to defend all doctors - just some.
Posted 12/14/2013 5:12 AM (GMT 0)
Gary, I agree, there are some very good doctors out there. I talked to my PCP today about my GI doctor and he believes one should be able to ask questions of and talk to their GI when they have a chronic incurable condition such as ours. He wanted to know if I wanted to make a change, since going to the current GI must be stressful and not something I looked forward to.
Posted 12/14/2013 8:35 PM (GMT 0)
I'm so thankful for the care I got from my GI last year when I ended up in the hospital after Christmas, I was one sick chick and he helped get me back on my feet.

What is absolutely indefensible, is the lack of a disclaimer about mainstream UC treatment. When I was diagnosed and told diet has absolutely nothing to do with this disease, that was/is a lie

When a doctor hands you prescriptions with unequivocal confidence, for pills that have marginal efficacy without explaining this to you, that is wrong. When they are unavailable to guide you through issues you experience from the drugs they provide, that is also wrong.

I'm afraid many of us are stuck between a rock and a hard place.

And yes, this forum is so important and especially that the long time UCers, keep sharing their experience
Posted 12/15/2013 1:26 AM (GMT 0)
I think this is a great forum, and still try to check in now and then to share my knowledge and experience even though my gut is pretty normal since I started remicade.
I wish there was more here about coping, and less about futile approaches to treatment or being cured. Seems the forum has gone in that direction in recent years, and it makes me sad when I think people are in denial about it or get false hope.
Posted 12/15/2013 5:23 AM (GMT 0)
Hi Peety,

That's so awesome that you're doing so well and found a treatment that works for you.

I have to ask which futile approaches to treatment you mean? Are you referring to drugs like Azathioprine which I took for 11 months and all it did was keep me in bloody diarrhea and give me episcleritis and swollen ankles and oh, I also lost a third of my hair and developed a gross skin condition? or what?

It's next to impossible to be in denial about a disease that is keeps one chained to a toilet unless they take prednisone. That makes me sad too. Too bad there wasn't a one drug cures all treatment.

I for one am going to keep trying to improve my situation by trying things that others here get results from. Nothing false about that kind of hope
Posted 12/16/2013 11:34 PM (GMT 0)
I don't post so much, but this forum is my GI. My new real life GI is burnt out and about 10 years behind current scientific thinking, but I'm not bothered because I can come on here and read the posts of old mike, canada mark and pathogen killer.

Because of this forum I understand this disease as well as almost anyone does (which isn't enough) and can pursue very safe strategies to help support remission.

(Lodi - I'm with you on azathioprine. It was sold to me as something that 'worked', despite low efficacy rates in trials)
Posted 12/17/2013 12:39 AM (GMT 0)

garylouisville said...
To defend the doctors, just a little bit. They are human beings too and they decided on this career and took an oath to help people and then they get patients like us coming in with a chronic disease that has no cure and I bet many of them get frustrated because they just don't know what to do to help us and that it may sometimes be depressing for them as well because some of them may feel like they have failed some of us.

I love that thought so much. I was feeling very angry today...despite last week's declaration that I love my GI's bedside manner. This reminded me odds are, he's trying. He took the time to sit with me, and he made sure he could see my face, and he apologized for the news he was giving me. Then I have a bad day and think of him as this guy who is just in bed with the med companies and doesn't really care how I feel. I am ashamed and put back in my place. I'm usually a person who sees the good in all people and try to figure out why someone made a choice that they did, and attribute it to meaning well. I need to keep my faith.
Posted 12/21/2013 7:36 PM (GMT 0)
I personally think supplements are a futile approach to treating the disease. Major dietary changes can give relief and probiotics make sense, but I don't recall anyone having significant or lasting relief from spending (a lot of) money on a bunch of supplements. False hope?

Denial is thinking you can recover from UC once you have it -- whatever the cause might have been for your body to develop this autoimmune condition -- and be cured. I fully expect that if I stopped remicade my autoimmune problem would return, and my gut would become inflamed again. Somehow it got ruined, pretty sure it was Accutane.

My hope lies with better biologics and I am certainly grateful for remicade, which was not available when I first became ill. It sounds like fecal transplant has lots of potential and maybe that will become mainstream, in some manner or with a product that regulators can get behind. That would be awesome.

I love my GI. She respects my experience! and we see eye to eye on issues like keeping my illness private. She could not be more empathetic, and lets me direct care decisions.
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