I want to have surgery

damo123 said...
I'm a firm believer in meds however I absolutely agree with Michelec here on this post. These arguments come up so often when the senior members will weigh in because someone is giving an opinion that they do not like or agree with. And then they will start appealing to "I'm only giving the medical viewpoint..." etc. Indeed if you look back at the posts here you will see there were snide marks made to VJ.

It is a crying shame the way senior members throttle posts from genuine members on here looking for advice and help in the name of medicine and science. It was the same with the vaccine debate during the summer. Lay off and give the whole community a chance to have their say once it is a genuine and worthwhile contribution even if it totally disagrees with your viewpoint.

No offense, but it's opinions like these that keep me away. I often side with medical community because I've been through the wringer with alternatives with absolutely zero results. I also watched some of our members struggle needlessly because they were anti-med, and I saw one person die from being reluctant to accept that his severe UC wasn't going to be controlled by natural methods.

I firmly believe we need to look at the big picture. This is an internet forum filled with people that could be anyone. We don't know what their diagnosis is, nor do we know what type of doctor diagnosed them, or if it was a doctor's diagnosis at all. It could be self-diagnoses - some may have never had a biopsy, or some could be misdiagnosed. We know NOTHING about anyone else's situation. It is infuriating when someone who has never had to take any medication gives non-medically documented advice about alternatives to people who are severely afflicted.

All I know is that I fought hard with alternatives and medicine, and my severe UC didn't respond. People like to make it out like some of us went in begging for surgery and that we push it on people, but it's not true. Always fight for what's best for you - surgery should be a last resort - or a well-thought-out plan for people who can't live with the long-term implications of this illness.

I don't think people are harassing VJ, VJ is the one saying "mind your own business". That is very rude, and he/she can use the ignore button. A forum is a place for opinions. If you don't want people to respond, don't post!!! I personally find the negativity toward ostomies to be overwhelmingly insulting. Firstly, do you know anything about surgery? Many people don't have ostomies, but when you say you WOULD NEVER get one, you're minimizing the illness. You can't control everything. VJ sounds misinformed about surgery, which I've stated before is NOT something to take lightly. VJ is very judgemental and bullies people with ostomies. People with ostomies are "acting like they are okay" and "i'd rather be dead than have an ostomy". Sorry, that's insulting. Plenty of people live well with an ostomy.

notsosicklygirl said...
I don't think people are harassing VJ, VJ is the one saying "mind your own business". That is very rude, and he/she can use the ignore button. A forum is a place for opinions. If you don't want people to respond, don't post!!! I personally find the negativity toward ostomies to be overwhelmingly insulting. Firstly, do you know anything about surgery? Many people don't have ostomies, but when you say you WOULD NEVER get one, you're minimizing the illness. You can't control everything. VJ sounds misinformed about surgery, which I've stated before is NOT something to take lightly. VJ is very judgemental and bullies people with ostomies. People with ostomies are "acting like they are okay" and "i'd rather be dead than have an ostomy". Sorry, that's insulting. Plenty of people live well with an ostomy.

Exhibit A.

A mod has already told people to be respectful, and ANOTHER mod (one of the usual suspects) shows up to judge me personally. Ok! Well I'm responding now, so I better not get punished for this, because I already stopped participating, but now I'm being drawn in YET AGAIN by someone calling me out. A mod no less.

My god, where to begin with this non-sense.

I couldn't give two hoots if people believe in modern medicine or not, or surgery or not. I came here to give my opinion and how it has worked out for me, which is IT DIDN'T. Modern medicine was totally dodgy for me and others I know, some of whom are close friends with IBD. So many side effects, so many treatment failures, not to mention added pain and suffering. Since it didn't work out for me, I have to look at treatment alternatives. But don't believe me, look at the actual drug data on things like biologics. Average remission rate is 30% or less.

It's laughable that you try to paint a narrative of alternative thinkers as, "Who knows who these people could be? Do they even have IBD? Have they had a proper diagnosis?" Are you for real? Trying to create those kinds of divisions on this forum? The same could be said for the Usual Suspects who show up in every alternative thread to bash anyone who thinks outside of the box. Who are you? Do you work for big pharma? How do I know your surgery story is true NSSG? Do you really want to go down this petty road? You make the choice. If you want to do the mud slinging thing, I'll be right there!

Firstly, YES I know a lot about surgery. I won't qualify myself. As I said before, I didn't make my decision against an ostomy lightly. I owe you ZERO explanation of my history to justify how and why. How dare you say that I'm a bully for having a different view on surgery? How dare you call me uninformed, and a liar? I have been attending an IBD support group for THREE YEARS in person. There are ostomy patients in there of all kinds, some of whom YES are clearly in denial. Whenever you're in remission, they are the first to question if it's real, if you're sure, if you're just delusional. If they can't create doubt there, then they make sure you know that your remission victory could be short lived, that you WILL flare eventually. It's always the ostomy folks doing that, not the people on biologics or whatever else. Ostomy folks love to prognosticate about illness because they had to lose big. And I'm sorry for that, I really am, not honestly? BACK OFF. And of course lots of people live just fine with ostomies. Anyone can make that choice. But it's like... the OP asks for people's opinions on ostomies, and I gave my (informed btw) opinion, and you come here to paint me as some evil villain who is ignorant about surgery and "maybe doesn't even have IBD for real, who knows?" Are you kidding me????

And no, I will NEVER get an ostomy. It is in all my legal documents. If a doctor violates that they will be sued to kingdom come. I would rather die than have one. And the more people like YOU try to belittle me over my MEDICAL CHOICE, the more hostile I am going to get. But I am not the problem here. YOU are. YOU are every time you show up to bully people who are against ostomies for THEMSELVES. YOU are any time you or someone like you shows up to denigrate my sincere efforts to get well when all modern medicine has FAILED. I like patient-directed care, and if that bothers you, then oh well! I have a right to the kind of care that I think I need, I have a right to consult the professionals I want, and I have the right to refuse any kind of care I want, even if it kills me. THAT IS MY SOVEREIGN CHOICE.

I am not a bully. I am REACTING to bullies. A victim of bullying can't be a bully. If you don't like seeing diverse opinions on a subject, then maybe you should take your own advice and stop posting here! HealingWell has a big problem, the world wide web of IBD knows it. CrohnsForum knows it. Everyone has talked about it. The same gang of people here roam the threads correcting all alternative attempts with their standardized views and display incredible intolerance. I'm sorry that alternatives didn't work for you ok? That doesn't mean they can't work for others. It DEFINITELY doesn't mean you should be correcting people and telling scare stores about ONE person dying of UC that nobody even knows about. Death by UC is rare across the board, very rare.

How dare you? Honestly. How dare you. The nerve. Well guess what? I am NOT going away. I get to share my knowledge and experience equally like anyone else. Accept it or not, I don't care, but DON'T show up to bully and intimidate. I will respond in kind EVERY TIME.

Post Edited (VanJordan) : 1/5/2022 1:31:33 AM (GMT-7)

ks1905 said...
I had to justify my reason(s) for surgery and pass some basic mental health screenings prior to the surgeon agreeing to operate on me.

Surgery is a long process, it took me about 10 months between all three surgeries and about 60 days in the hospital. I am happy to have had the surgeries. I am still on immunosuppressants and my j-pouch works really well with the help of Stelara.

Keith why do you still need immunosuppressants?

I developed an aggressive fistulizing form of Crohn's/UC. I tried alternative methods, diet, the beginning medications and quickly graduated to Remicade, an ostomy, and Remicade again. I distrusted Remicade-tried everything to avoid it. I thought an ostomy would mean the end of my world. I knew I could not deal with it emotionally, psychologically, or physically. (Boy was I surprised! I was stronger than I thought in some ways and weaker in others. )

When you are rolling around on the bathroom floor, too weak to get up, in such pain you do not want move and can only lay there whimpering, trying to avoid your vomit, your blood pressure is plummeting, and you are going into septic shock...that's when your choices are stripped away and things become clear. (Hey..I am not going to paint a pretty picture here cause when this happens it can happen very quickly and it gets ugly even quicker)

I was obstructed and I chose an ostomy. Once the colorectal surgeon removed the diseased portion of the colon I felt much better gut wise.(even though surgery did not stop my extra intestinal symptoms) Once I saw my stoma I vomited. It took me 45 minutes to change my bag the first time. I freak out with needles, blood, intestines coming out of my abdominal wall... I was so confused because I felt so much better but there was this ostomy. Do I regret the ostomy? Never. Not for a second. It saved my life literally. Do I sometimes wish I didn't have to deal with external appliances-absolutely. Does the ostomy limit me--only regarding lifting heavy objects. Now I can do things I could never do after being diagnosed with UC/Crohns. The positives of having an ostomy outweigh the negatives for me. The one thing I would have done better?? Research, making plans and setting expectations on what I could or would do, realizing my choices were not set in stone and finally considering how my disease and my choices impact not only me but everyone else. My surgeon tells me all the time that he'd prefer to research, study and prepare for a surgery rather than dealing with an emergency situation.

I have discovered the "I could not deal with this or that" have come to pass. The actions I thought I would take didn't always happen. This disease is ever changing. You must prepare yourself for as many scenarios as possible. Most importantly...it is ok to change your mind and move in other directions. Please remember that someone else might attribute their own experiences into interpreting what you are saying or doing. They might say you can't really feel better or that you can't really do well if you take this medicine, eat these foods, or are happy living with an ostomy. It's their way if coping and they are telling you their capabilities and feelings.

Remicade... I still take it. It concerns me. Without Remicade I have not done well...so for now... I will remain on it. That does not mean I don't do as much as possible to utilize other tools to combat this disease.

Good luck in making your decision. Only you and your doctors really know what's best for you. (So chose a good doctor and seek second and third opinions.,)

Clo

My god that was a long, boring pile of self righteous drivel!!! Thanks for nearly putting me back to sleep. You're like a broken record vj.