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Posted 1/17/2018 3:25 PM (GMT 0)
Just reading in paper today about Glenn Fryes wife filing suit against Mt Sinai hospital and his Dr here in New York She's saying they were negligent in treating him. He had Colitis and Pnuemonia. I had Pnuemonia in both lungs back in 08 and didn't know the IV antibiotics would give me Big D for 8-9 months Tried most meds to get me back to normal. My colitis was always unstable since then leading to my surgery last week. Pnuemonia and Colitis aren't a good mix
Posted 1/17/2018 3:57 PM (GMT 0)
I had pneumonia and a flare up. They gave me steroids for the pneumonia and that also helped the flare up. by the time I left the hospital, even though I had taken tons of strong antibiotics, I was in remission from the pred. I thought things would stay calm, but they didn't. I ended up in an even worse flare up a few months later. At that time I had tried everything except entyvio. I started entyvio, didn't have any improvement, and moved on to surgery quickly. I just wanted a life without all these considerations. So far, it's been the best thing for me.
Posted 1/17/2018 4:37 PM (GMT 0)
NSSG. One of reasons I wanted surgery is bc of the pnuemonia/Colitis connection. Not only did I have Pnuemonia in 08 but also 09(only in one lung). My gastro said if Glenn had his colon removed few years back he would still be alive. I didn't want humira or Remi (they lower your immunity)bc I was afraid of a very weak immune system being I don't have a spleen(spleen helps immunity).
Posted 1/17/2018 5:07 PM (GMT 0)
I am happy you're taking the steps to stay healthy. I actually developed the bacteria that caused my pneumonia from being immune compromised on remicade, mtx, and prednisone. It's actually in the prescribing information if you read it. I am happy to be done with all those nasty drugs too!

www.remicadehcp.com/crohns-disease/patient-counseling/safety-considerations

It's also a relief to no longer be dependent on paying for all that stuff that's making you weak smilewinkgrin
Posted 1/17/2018 5:29 PM (GMT 0)
Oh yea. I truly feel if I went on humira or Remi and got Pnuemonia again I had good chance of dyeing. That can't happen now
Posted 1/18/2018 3:36 AM (GMT 0)
If Glen Frey "had his colon removed few years back he would still be alive" is not a healthy or accurate idea for Frey's widow & family or any other UC patient. The medical establishment has pushed this wrong idea about surgery for ages and now even they aren't buying it.
If your life is in danger then yes, surgery has literally saved people, but as we know it is a very personal choice. The latest studies show many unnecessary surgeries, dubious results after surgery and a host of new issues for patients post surgery.
Glen Frey's case was a very complicated one with a very sad & terrible ending. To devalue the decisions he and his family made is disrespectful and simply not borne out by facts.
Posted 1/18/2018 4:20 AM (GMT 0)

beatUC said...
If Glen Frey "had his colon removed few years back he would still be alive" is not a healthy or accurate idea for Frey's widow & family or any other UC patient. The medical establishment has pushed this wrong idea about surgery for ages and now even they aren't buying it.
If your life is in danger then yes, surgery has literally saved people, but as we know it is a very personal choice. The latest studies show many unnecessary surgeries, dubious results after surgery and a host of new issues for patients post surgery.
Glen Frey's case was a very complicated one with a very sad & terrible ending. To devalue the decisions he and his family made is disrespectful and simply not borne out by facts.

There is some truth to that. Surgery certainly isn't a "cure all". I've chatted with a few people who have had devastating consequences from surgery. i don't think anyone paints a perfectly rosey picture of surgery though. It's tough, it's not going to put you back at the 100% you knew in the past, and no one is offered it unless there is good reason - like the case where death is at risk or zero QoL.

I don't know what Glen's case was... Maybe he was in remission for long periods and got pneumonia, nothing in that case would have led him to think surgery was the answer. Then you see songlady who probably should have considered surgery 2 years ago and waited. I am thankful she did it when she did, but perhaps the progression could have been stopped before requiring chemo if the professionals were more expressive of the concern level... I think we all thought "wait and see" "don't rush" "you will never be the same and your UC is mild", but maybe that thinking was not healthy. I don't know.

Being with a colon, and thinking the colon is the most important thing, I understand. I've been there. Then you're without it, and maybe not the same, and maybe I can't say all positive things, but I can see, it's really not a huge deal for me. The people I know who have had it harder would likely say very different, and for them, yes, it is a huge deal. The problem is that you don't know how it will be for you.
Posted 1/18/2018 3:25 PM (GMT 0)
I know from experience that a person with mild UC which is what I had could die from Pnuemonia. It took months for 6mp or whatever got me better to kick in after a week of IV antibiotics. I was extremely ill after getting out of hospital. Most people I know that had surgery wish they had it done sooner. Where are all the people u claim to not be happy with surgery decision ? I'm sure there's some but I rarely if ever see them post anywhere
Posted 1/18/2018 4:09 PM (GMT 0)
Some have had trouble. As an example, here's SolomonSeal's story. Last update, SolomonSeal had the j-pouch removed, and doing well thereafter. www.healingwell.com/community/default.aspx?f=38&m=3263001

NCOT hasn't found relief from her takedown surgery.

There's been some over the years who've had less than stellar outcomes; it happens to some. The majority do well though!
Posted 1/18/2018 4:10 PM (GMT 0)

3timechamp said...
I know from experience that a person with mild UC which is what I had could die from Pnuemonia. It took months for 6mp or whatever got me better to kick in after a week of IV antibiotics. I was extremely ill after getting out of hospital. Most people I know that had surgery wish they had it done sooner. Where are all the people u claim to not be happy with surgery decision ? I'm sure there's some but I rarely if ever see them post anywhere

I know a few people who have had surgery, that I talk to off here. Out of the few, I have 2 friends who have had a really rough ride with surgery. Both have had multiples surgeries due to blockages, kinks, adhesions. One has "inflammation" that hasn't resolved, joint pain, tons of other inflammatory symptoms - no one knows why. She's been in and out of the hospital since she had the first step. Can't work, can't travel. I have been lucky myself, and I am very thankful for the outcome I've had but I am not sure what the likelihood of a good outcome is... I am sure surgeons will tell you everyone has one, but if I know 2 people personally who have struggled, it makes you wonder. One of the two probably has no regrets, but she's definitely struggled. She's still eating restricted diets and managing symptoms on a daily basis. Not necessarily UC symptoms, but post-surgery symptoms.
Posted 1/18/2018 4:44 PM (GMT 0)
Yea. Sure there's a few. In my case it wasn't emergency surgery like many have had. Would u think at least 50% of people who have surgery are emergency patients?? Meaning most prob are in hospital already?? My case I was scared that no spleen,colon not working good,don't want Remi or humira so surgery it is. Can't take chance of starting Remi or humira and having sucess with them BUT them also lowering my immunity. I wasn't really scared about decision. Glen Frey death scared me bc of Pnuemonia I had. Seems right now everything going ok for me after surgery
Posted 1/18/2018 4:48 PM (GMT 0)
I went to Glenn Frey's web page and it says,

"Glenn fought a courageous battle for the past several weeks but, sadly, succumbed to complications from Rheumatoid Arthritis, Acute Ulcerative Colitis and Pneumonia."

If it is acute then I don't think, they will remove colon. right?? I think he might be on immune suppressing medication and pneumonia hit and killed him as he could not fight infection. In that sense if you remove colon, you don't need immune suppressing drugs and your immune system bounce back and will be able to fight but in Glenn case, he might be on those medication due to RA and not colitis.

We don't know all the details. These conditions are scary in its own. RA, IBD, Psorisis and hundreds more.
Posted 1/18/2018 5:06 PM (GMT 0)
True. I was scared bc once u don't have surgery and u get pneumonia u might have a battle on your hands. Mostly when your older bc you immune system gets weaker as you get older. I'm 59. Glen was 67. Normal older people die from pneumonia. Add UC to picture and her we go with trying to survive
Posted 1/23/2018 4:46 AM (GMT 0)

3timechamp said...
Yea. Sure there's a few. In my case it wasn't emergency surgery like many have had. Would u think at least 50% of people who have surgery are emergency patients?? Meaning most prob are in hospital already?? My case I was scared that no spleen,colon not working good,don't want Remi or humira so surgery it is. Can't take chance of starting Remi or humira and having sucess with them BUT them also lowering my immunity. I wasn't really scared about decision. Glen Frey death scared me bc of Pnuemonia I had. Seems right now everything going ok for me after surgery

The people I know were not emergency. Surgery is a scary proposition, but going into it healthy is the best possible situation. You are right, if you have surgery, and you have a good result, that is less risky than living with UC, and the drugs, but if you have surgery, and you're unhappy with the result, maybe the risks of living with it are worth it. I would imagine (and research says) the chances of a good result are way up at over 90%, and even people who have less than stellar results, usually feel thankful to be done with the issues they had prior to surgery, so that's definitely something to consider. For me, I had pneumonia and it scared me too. I don't want to go through anything like that again. I had surgery, I wasn't emergency, I am fine. You will do great. You did your research. You're working with the best hospitals and surgeons. You will do great. No more drugs, no more worrying about cancer, pneumonia, weak immune function... No more monitoring. It can be very liberating.
Posted 1/23/2018 11:30 AM (GMT 0)
Thanks and I agree with u on all
Posted 1/23/2018 3:56 PM (GMT 0)

beatUC said...
If Glen Frey "had his colon removed few years back he would still be alive" is not a healthy or accurate idea for Frey's widow & family or any other UC patient. The medical establishment has pushed this wrong idea about surgery for ages and now even they aren't buying it.
If your life is in danger then yes, surgery has literally saved people, but as we know it is a very personal choice. The latest studies show many unnecessary surgeries, dubious results after surgery and a host of new issues for patients post surgery.
Glen Frey's case was a very complicated one with a very sad & terrible ending. To devalue the decisions he and his family made is disrespectful and simply not borne out by facts.

I'm still on biologicals after having my colon removed. It is my choice and I made it with the help of my GI. I know the risks. My other alternatives are to stay on antibiotics all the time (not a good choice), or I can go for another major surgery (which have risks) and have my pouch removed. For ME, a biological was the best decision. None of the options are good but I tried to make the least bad decision for myself. There are no guarantees in life.

I know that it is a normal thing to be fearful of surgery (it's human nature) but making a decision out of fear and not weighing all the risks/options can lead to a bad decision if you outright refuse to consider all the alternatives. I'm not blaming anyone, surgery is a personal decision but as a whole, this forum makes surgery out to be this big, bad difficult thing because people failed and needed surgery. When in fact, many people who have had surgery now have a better Quality of Life because of it.

I think UC is awful, surgery is not because surgery can make you better.
Posted 1/23/2018 6:31 PM (GMT 0)
Tony Snow got colon cancer after suffering for years with UC. If he had surgery, he might not have got cancer too.

These are really hard decisions. There are no guidelines on when to go for surgery. I see some people make that decision before going on any immunomodulators. If UC is really severe, should we get surgery before exploring all the harsh medicine???
Posted 1/23/2018 7:18 PM (GMT 0)
Tough choice. Few reasons I decided to do it now
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