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Ulcerative Colitis
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Posted 8/27/2022 10:29 AM (GMT -8)
I do wonder if people who have had surgery are sometimes deterred from posting here because of the surgery-bashing that goes on (from people who didn't have surgery). I like to hope it's because they are mostly getting on with their lives, something which is impossible when you are flaring for years at a time.
I really appreciate everyone who takes the time to post their experiences - positive and negative. You rarely get to meet other UC patients in real life and I'm not sure I've met anyone with a j pouch or stoma (that i know about).
Posted 8/27/2022 12:06 PM (GMT -8)
I agree pd! It’s a pretty high possibility that I’ll end up with a stoma at some point in my life because of my repeated diverticulitis attacks. Reading stories here about stomas has lessened my fear about it. I don’t know why it should but reading someone saying they’d rather die than have one is really distressing to me. I know that’s silly of me but it’s true.
Posted 8/27/2022 12:26 PM (GMT -8)

poopydoop said...
I do wonder if people who have had surgery are sometimes deterred from posting here because of the surgery-bashing that goes on (from people who didn't have surgery). I like to hope it's because they are mostly getting on with their lives, something which is impossible when you are flaring for years at a time.
I really appreciate everyone who takes the time to post their experiences - positive and negative. You rarely get to meet other UC patients in real life and I'm not sure I've met anyone with a j pouch or stoma (that i know about).

It’s mainly because they are out living their lives. So what if the clueless anti-surgery trolls attack you? They know nothing about surgery, what it is to go through it, recover from it, and then live your life afterwards because your quality of life is greatly improved.

Don’t get me wrong, most people do not need surgery but if you do then don’t put it off. You’ll see *almost* every surgery patient say the same thing, “I only wish I did it sooner”. The other thing they say is to find a very experienced surgeon to do your surgeries.
Posted 8/27/2022 12:29 PM (GMT -8)
what are your symptoms of pouchitis?
Posted 8/27/2022 2:24 PM (GMT -8)

Charlie789 said...
what are your symptoms of pouchitis?

If it’s not treated then I’ll get small ulcers in my pouch. Noisy pouch. More frequency but no urgency.

It’s easily treated with antibiotics or a biological. I occasionally add some pepto to the mix.

I have pouchitis but it is not an issue for me. UC was definitely an issue and sometimes debilitating for me.
Posted 8/27/2022 3:01 PM (GMT -8)
Just the thought of surgery terrified me. And there was some guy in here saying he'd rather die. And Keith popped up and started saying when he woke up from having surgery he felt so much better.

That was one of my first thoughts that popped into my head when my CRS and GI said they could not repair the rectum or anus right now so we needed to perform surgery and it would probably be a colostomy. Right before I closed my eyes from the anesthesia I remember thinking please let it be ok and let me feel healthy again. And I did, I still do.

For me it's the scarring from UC/Crohn's attacking my body so aggressively, the fistulas, arthritis, PG, heat intolerance and the extra intestinal things that still happen that make my life difficult. My cells and blood work didn't change for over 2 years while I was searching for answers and then there was the waiting so long and trying everything under the sun.

For me to suddenly wake up and feel so much better than before was and is amazing. I don't have to look for a bathroom all the time. I am no longer incontinent. I do not want to be put back to the way I was especially when I am doing ok as I am. I do have that nasty fistula that does release mucus frequently but when compared from before... Easy Peasy. (And that's gonna go before long)

When a nurse came in after my surgery to hold my hand and to tell me they performed a colostomy...and to say that she was sooo sooo sorry... I interrupted, I asked her if she was sorry that I no longer had to crap all over myself while running to the bathroom or if she was sorry I suddenly felt so much better. An ostomy of any sort is what the patient makes of it. People can choose to be a victim or choose to live life to the fullest. They can be warriors. So please don't say your sorry. Come in hold my hand and say "you made it. Now is the beginning of your adventures. A new normal with the possibility of greatness if you grab hold with both hands." She cried and told my CRS what I said. Now the CRS and GI sometimes have people call me if the patient wants to talk to someone with a colostomy.

No one should be afraid of surgery... Or made to feel like they failed because they took that route...and I am sure that the ones that aren't posting are still reading the site occasionally... and going about their busy lives. There are times when I do that... But I come back. For the same reason you all do. To try to give support to others, sometimes to get support from people like me that understand what I am talking about, but mostly to check in with my friends here.. who have helped me so very much.

You all are priceless and I Thank God for you every day.

Clo
Posted 8/27/2022 5:18 PM (GMT -8)
I am in a ostomy group on facebook,19000 or so members. I can't believe that every week there is like
3-4 or more emergency surgeries for people who are septic with diverticulitis. They have added 1000
people in the past few months. What is going on with peoples guts, this is crazy. If you get an ileo I see a lot of
problems with flat or inverted stomas,bag leaks. If you have a rectal stump like me I see more and more
complaining about diversion colitis, if real bad then they get Barbie or Ken butt. Almost 100% will get
diversion colitis to some degree or another if you have a diverted colon/rectum. Lot of young people
getting diverticulitis. Then there are babies born with none functioning colons,they also have bags,sad.
Then of course IBD and colon cancer people.
My stoma Laurie works fine.
Oldmike
Posted 8/27/2022 5:40 PM (GMT -8)

poopydoop said...

Sara14 said...
Pretty sure he's back with a new username. :/

I suspect he has had several iterations on this forum.

I can assure you that from the very active discourse on the other site which shall remain nameless that he has no interest in healingwell so if anyone pops up trying to talk about Pravda or whatever it's probably not him so give them some slack maybe. For the record I'm a very very skeptical person (especially to the word cure) but love open discussion so will jump between the two forums (long time lurker on here) and see how this pans out. Also I'm not a team VanJordan person or a DrPravda shill or an anti surgery person. Just open to new things. Best regards to all. smile
Posted 8/27/2022 5:54 PM (GMT -8)
Happily I made the choice to have surgery after my last colonoscopy when my gastro wanted to start me on Humira or Remi. I said NO Doc I'm done with Meds after 32 yrs
Keith recommend NYP here in NY. I didn't use his surgeon but got a great one. My colon was in bad shape,scaring etc and I wanted to get rid of my diseased body part. Great decision. I have my life back. No more anxiety,accidents etc. Bag is easy adjustment. Like Keith stated surgery gives you your life back. I'm no longer a hostage to UC. As for Mr know it all cult leader,grateful he is gone. Had an issue with him a year or so ago. Big Ego is a dangerous thing. Peace to you all😊
Posted 8/27/2022 6:55 PM (GMT -8)
Please no name calling.....
Posted 8/27/2022 7:53 PM (GMT -8)

3timechamp said...
As for Mr know it all cult leader,grateful he is gone. Had an issue with him a year or so ago. Big Ego is a dangerous thing. Peace to you all😊

It’s seemed like the majority of the threads that VJ participated in turned into toxic threads that ended up getting locked. We’re better off now that he’s gone.
Posted 8/27/2022 9:38 PM (GMT -8)
Agreed. Pray for him bc something isn't right
Posted 8/28/2022 1:30 AM (GMT -8)
lUvsoCcer,

There is no need to give us updates here about what is happening on the other site or about what that other character is up to. Kinda strange you feel the need to do this. No one here cares two jots about this or what you are discussing and if you keep coming back here with such updates it will only lead to more name calling and nasty posts. Since those people left, HW has been a very pleasant forum once again.
Posted 8/28/2022 11:49 AM (GMT -8)

damo123 said...

Since those people left, HW has been a very pleasant forum once again.

I am looking forward to it.
Posted 8/28/2022 1:40 PM (GMT -8)

ks1905 said...
I do not read threads with titles that I am not interested in like the antioxidant methods -- it's just not my thing; I'm not interested in it and I can't add any value to it.

If you click on the person's name then you can see the last time they were logged in. Van Jones hasn't been around since he started attacking the mods and breaking the rules. Maybe they finally nuked his account.

When I have the time then I am quick to jump into a surgery thread because I can speak from that experience where most on this site cannot.

if you are not interested in any thread i can understand it and i repect your choices. But there were with similar thinking many member in that thread who were not interestend in that topic but they told approx. if sby dealing with antioxidant or Dr. Pravda 's studies then he or she stupid... ok not in this way exactly ... but the sense of the meaning was the same.
Insulted that people who dealt with this theory.

The sense of this topic is share the infirmations maybe this infirmation can help on other members.

And what hapend? the thread has been deleted. I think it was not smartest thing.
Posted 8/28/2022 1:54 PM (GMT -8)

Old Mike said...
I am in a ostomy group on facebook,19000 or so members. I can't believe that every week there is like
3-4 or more emergency surgeries for people who are septic with diverticulitis. They have added 1000
people in the past few months. What is going on with peoples guts, this is crazy. If you get an ileo I see a lot of
problems with flat or inverted stomas,bag leaks. If you have a rectal stump like me I see more and more
complaining about diversion colitis, if real bad then they get Barbie or Ken butt. Almost 100% will get
diversion colitis to some degree or another if you have a diverted colon/rectum. Lot of young people
getting diverticulitis. Then there are babies born with none functioning colons,they also have bags,sad.
Then of course IBD and colon cancer people.
My stoma Laurie works fine.
Oldmike

I like your comments i can find lot of interesting information and question always in your comments...

My question is the same? What happening in the people's bowel?
I red another interesting thing i dont know if it is true but since there immunsupressant biologyc medicines the bowel surgeries has increased. Okay it can have more kind of cause ... in older times there were more people died in UC etc etc...

but do you know patients who live 20+ years with entivio or remicade...
i heard max 7 years and similar long after caused sideeffects, or the effect has stopped... other medicine did not worked...
ok 7 years is better then zero...but i think this is a missway, ...
etc etc..
Posted 8/28/2022 2:23 PM (GMT -8)
If you’re only judging the situation by the last 2 or 3 threads that Van Jones was causing trouble in then you’re missing the larger picture, VJ has been behaving this way ever since they joined. There was a long history of VJ’s bombing throwing and I’m surprised they let it go on for as long as it did. I’m looking forward to some normalcy and peace & quiet on HW.
Posted 8/28/2022 4:42 PM (GMT -8)
Yes there are people who have been in remission 20 years on remicade. During the year that I tried biologics I met people who had been in remission 4 years, 7 years, 10 years etc, living life normally, eating whatever they want. With the newer (non biologics) drugs it's not clear how long they last because they haven't been around long enough. The early evidence is that they can keep patients stable for a long time (at least 5-6 years).

Regarding surgery, the relevant factor is the rate rather than the absolute number (increasing incidence of IBD will affect the numbers). The rate has been decreasing since biologics appeared (if you google search you can find the figures, or just ask your doctor).

Even if I have surgery eventually I'll be happy that i got a few extra years with a colon in remission, due to medication.

People say they want western medicine to do better... I have to ask, in what way? Research costs time and money, and moves very slowly as a result. That applies both inside and outside pharmaceutical companies. If you want research to move faster then you'd have to overhaul the political system and invest more money into it (one way or another).
Posted 8/28/2022 5:28 PM (GMT -8)
Also something else to think about with biologics... they are not just for IBD patients but also arthritis, lupus, and other autoimmune diseases. For many of those people biologics have been a godsend, in terms of improving quality of life.
Posted 8/28/2022 5:31 PM (GMT -8)
I've been on Remicade 7 years. Still working.
Posted 8/28/2022 5:39 PM (GMT -8)

poopydoop said...
Also something else to think about with biologics... they are not just for IBD patients but also arthritis, lupus, and other autoimmune diseases. For many of those people biologics have been a godsend, in terms of improving quality of life.

I remember when I first got sick in 2005, I ended up in the hospital in August for the first time and the FDA hadn’t approved Remicade yet - it was approved by the FDA a few months later. My GI offered Remicade to me but said it would have taken about 3 days to get it. He recommended Cyclosporine at the time because it was fast acting and more effective. I was starting to improve in about 24 hours on cyclosporine.

If there were biologicals available at the time I probably wouldn’t have gotten so sick, I would have been on a biological a few months earlier.
Posted 8/28/2022 6:58 PM (GMT -8)
Poopy I didn't want to be dependent on meds any longer
I didn't want potential side effects from biologicals harming me
Luckily the bunch of times I was on Pred in 32 yrs doesn't seem to have harmed me unlike some others on here
But my colon was in rough enough condition that surgeon agreed surgery was needed(thank god). His agreeing to do surgery saved me from biologics
Not easy decision for many as far as surgery
Hope the best for you 😊
Posted 8/28/2022 8:18 PM (GMT -8)
3x.... . You haven't ever discouraged anyone from doing what they felt was right for them. You've always told your story. It helped me set expectations.

Biologics aren't for everyone. I know I tried to avoid them. Now I'm just glad they are available.

This disease is so different for everyone. We all react differently and yet have so much in common.

Its so important to try to tell your story because maybe there will be that part in it that reaches someone, or shows them they might be going in a harmful direction. Or that the little thing they keep running into may not be so little. And sometimes you just reach out for support or a smile. I don't think anyone else understands what someone with IBD goes thru unless they have gone thru something similar.

There have been sooooo many times when I have read a post from you all and suddenly thought .. OMG... I'm doing that. This is not working.. I need to change direction. You all have saved my butt so many times.

And the surgery aspect of it is just huge. Regardless of if you have a J pouch, colostomy or ileostomy..... People need to know that it's not all bad. That you can move forward. It also helps you figure out what your expectations should be.

It's nice to have a place where others are going thru what you are going thru, to hear everyones story and read about new things available. It's also nice to have calm debate. I know there have been several times you all have had to talk me down from some stupid idea.

I seriously Thank God every day that you all are here so I can reach out.

Stay safe all!
Clo
Posted 8/29/2022 4:02 AM (GMT -8)

damo123 said...
lUvsoCcer,

There is no need to give us updates here about what is happening on the other site or about what that other character is up to. Kinda strange you feel the need to do this. No one here cares two jots about this or what you are discussing and if you keep coming back here with such updates it will only lead to more name calling and nasty posts. Since those people left, HW has been a very pleasant forum once again.

At damo123 would it have been okay if I had replied negatively about VJ like everyone else then? So essentially if you tow the line and don't speak against the prevailingly thought then that is fine. I was putting the update in as in this thread there was speculation that he was still posting. I notice you didn't jump on the speculation as it was negative about VJ and that's fine? I get it. open discussion is clearly not allowed. Fine. I'll shut my mouth. I purposefully worded my last post to be as nice and not inflammatory in any way but even then get jumped on. Good stuff.
Posted 8/29/2022 5:36 AM (GMT -8)
Absolutely. People are free here to talk, chat and argue. They must obey the forum rules that is a given. There are lots of topics debated and discussed here over the course of a year. What people took offence too was the nature, tone and inflammatory remarks from that other character. This was a repeated offence and probably explains why most people on here are very glad to see the back of him and like I said none of us need an update about what I happening on your other site.
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