I want to have surgery

UC is harder in the beginning because you just don't know what works and what doesn't. I failed all treatments, but I will never get an ostomy. I would not be able to live with one. I've discussed this at length in therapy, and an ostomy would be so hard on my mental health that life would not be worth living anymore. It's better for me to live with a flaring bowel periodically than the body trauma of major surgery.

I've been on a natural health quest for years now. I've had periods of medication free remission, all because of natural approaches. If you are determined and curious, you can find answers. Don't settle for modern medicine, their therapies are honestly really dodgy. They are a lesser evil for many people, but they are not "good".

You may want to check out the Gould's clinic in Australia, under Dr. Hawrelak. They do consults globally, through Zoom. He has a high remission rate, using natural methods, but it's expensive. However, when you think about the price of life long UC, it could be really good to learn his way of looking at this disease, as well as the recommendations he suggests. I don't see him anymore but use his methods all the time.

The options are not medications/biologics vs. surgery. That's a false dilemma that modern medicine has created instead of admitting that they don't know what they're really doing and referring you to other systems of medicine. Not to mention, the pharmaceutical execs have been recorded in their broker seminars talking about making sure cure rates are not too high because it affects their bottom line, which is MONEY. In my experience, a good naturopath can do way more than a GI doctor, without harming you. A lot of naturopaths are garbage, but there are some really good ones who understand this through and through.

Don't give up, there are solutions. You may just need to broaden your view. It will require you to break through some of your conditioning, that modern medicine is the be all and end all. It's just not true. Keep going!

VanJordan said...
I failed all treatments, but I will never get an ostomy. I would not be able to live with one. I've discussed this at length in therapy, and an ostomy would be so hard on my mental health that life would not be worth living anymore. It's better for me to live with a flaring bowel periodically than the body trauma of major surgery.

I don't know your situation, but the temporary ostomy is not too bad, especially in comparison to severe disease. I think it's really important for OP and others to speak to people who have had the procedure before deciding they can't live with it. If you poke around the ostomy communities online, those of us who end up with an ostomy (temporary or permanent) due to a history of severe UC overwhelmingly find that it was the right decision and that our quality of life is significantly improved and we feel healthier pretty much immediately. People who just got diagnosed and are almost immediately in surgery and those who have ostomies due to cancer or accidents tend to have more mixed feelings because they haven't lived long with the hell. Also, most people seem to be pretty okay with their j-pouches if they choose to go that route.

Thankyou all so much. I appreciate everyone’s views. I’m all for natural therapies and they would definitely be my choice as I’m sure we’d all love that option to work. Which is why I was so keen on FT should I ever come to this decision. FT will be something I definitely go over again with my GI in January. Van Jordan I will definitely do some more reading and research . I’ve been a quest for natural treatments and clean living since I was diagnosed. I think when it started to affect my pancreas and joints and caused the PE I panicked and realised it was time to accept the medications I’ve lived in fear of. My GI did mention he has patients on entyvio who have zero inflammation having FT. This didn’t make sense to me. My idea of having FT would be to get off medication or at least the heavy medication. You’ve all helped me greatly knowing that whatever the outcome may be, it might not be as grim and overwhelming as it feels at the moment and I don’t feel like I’ve got a death sentence. I know somehow I will get strength from this. Whether it be my mental health coming to terms with my mortality, which I’ve struggled with my entire life or just learning to live each day to it’s fullest. Thinking about what I once felt important seems so trivial now. Knowing my children are scared and worried. Thinking about them and my husband having to live without me (we are only a small family) has been the most difficult. I’ve seen my husband cry maybe twice in 30 years. The second time was waiting for my Hepron infusions to start. He stayed with me until 4am so I didn’t have to be alone. I’ve definitely reevaluated my life. I just keep praying that this too shall pass

I posted this article years ago and people got very angry with me and I was attacked, lol. I'm now on Xeljanz, in remission and relieved I didn't need surgery. Surgery isn't a decision to be taken lightly. Unfortunately, we often have to choose between two options that both can carry significant risks and neither are ideal.

poopydoop said...
There are many intelligent, motivated UCers who have invested huge efforts in finding a natural solution to their illness only to become more sick and have their disease progress and finally end up taking "modern medicine" (or requiring emergency surgery).

At the beginning of the last century UC was fatal for 60% of sufferers. Thank god we have modern medicine or most of us on this forum would be dead.

Is modern medicine perfect or the final solution? No, of course not. There is active research into the role of the microbiome but it takes time to translate that into tailored therapies for patients.

If you want things to move faster, go and work in a field where you can earn millions and donate your wealth to medical research.

Van Jordan has taken very long courses of prednisone to manage his flares.

At this point my best chance is doing what my Dr advises. I believe you are correct. I’m out of my depth as far as a natural solution. Hopefully when I’m more stable I can research some natural products to counteract some of the side affects of whatever gets me into remission. For now I just want to get better.

ya, gonna have to agree damo, since i happen to be one of those fortunate enough to find success exactly as you described -

the longer i live, the list of things that i thought impossible grows shorter every day

TT

There are different types and severities of UC and that's why "natural methods" work for some and not others. Most UCers need medication and there is no shame in that.

In a lot of countries around the world health services are funded nationally, and if they could find a cheap cure for a disease they would run with it.

No doubt on trying any particular natural med or medication to keep you healthy. I did that for years just not the natural way. I did fear humira or remicade and preferred surgery over biologics. Both Gastroenterologist and surgeon agreed colon wasn't going to repair itself with help of meds or a natural way. Tough decisions for us all.

3timechamp said...
4 years Jan 9th 2022 that I had surgery #1 of 3. Best decision I ever made. Bag was on 7 months and very simple once u got hang of it. Bag was least thing to worry about. I've had no complications only incisional hernia bc I lift too much at work. Many on here gave me direction once I thought of surgery-Keith,NSSG were helpful. No more anxiety. No accidents in my pants. BMs depend on how much I eat I can hold it in pretty well unlike last year of UC. I had UC 32 yrs so I lived with it many years. Good luck and God Bless you and all who have UC[/quote
This makes me less scared. I also follow Zoey Wright 2x world champion fitness model who won her comps wearing her bag and went on to win another with a j pouch. I know it will be tough if it happens but where there is hope there is will. ]

FlowersGal said...

VanJordan said...

Don't settle for modern medicine, their therapies are honestly really dodgy. They are a lesser evil for many people, but they are not "good".
The options are not medications/biologics vs. surgery. That's a false dilemma that modern medicine has created instead of admitting that they don't know what they're really doing….
You may just need to broaden your view. It will require you to break through some of your conditioning, that modern medicine is the be all and end all. It's just not true. Keep going!

Van I strongly disagree with your view. I don’t think it’s fair to the OP, who is really struggling with a decision about stronger meds, for you to bonk modern medicine. You can have your views about how bad it is — but where would we be without it? I would have never been born without modern medicine developing insulin because my father would have died. So blanket statements that pretty much equate modern medicine with evil are not helpful for anyone here. You can post all you want about natural methods but I can’t countenance you calling modern medicine dodgy.

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I think VanJordan is just saying what works for him/her. This thread is giving opinions/suggestions, which is what the OP wants.

suchatravesty said...
I don't know your situation, but the temporary ostomy is not too bad, especially in comparison to severe disease. I think it's really important for OP and others to speak to people who have had the procedure before deciding they can't live with it. If you poke around the ostomy communities online, those of us who end up with an ostomy (temporary or permanent) due to a history of severe UC overwhelmingly find that it was the right decision and that our quality of life is significantly improved and we feel healthier pretty much immediately. People who just got diagnosed and are almost immediately in surgery and those who have ostomies due to cancer or accidents tend to have more mixed feelings because they haven't lived long with the hell. Also, most people seem to be pretty okay with their j-pouches if they choose to go that route.

I have poked into the ostomy communities, a lot. I didn't make my decision lightly. I even attended ostomy support groups in person. What I found was really mixed. Some people were grateful; some people were in denial and pretending they were okay but were highly triggered (like some people on this forum) when I said I could never do that to myself; some had horrible experiences that derailed their lives forever, and they can never undo it. I think people who are truly okay with their ostomies wouldn't mind someone like me saying I'd personally never get one.

What's common is that people fail modern medicine and then they are told that their only remaining option is surgery. For some people this is true... like, their situation is really dire and they need surgery now. Other people could afford to wait, but they believe the ostomy prognosis too soon and get their bodies permanently altered forever when maybe some basic natural remedies could help them a lot. I have achieved periods of medication free remission with such remedies.

When I show up to these conversations to let desperate people know that there are other possibilities, the same gang always shows up to condescend. I could list their names right here, but I won't do that because it will just inflame things and I want the OP to get the convo they wanted.

I for one, will not tolerate any type of bullying. This disease is different for everyone. Which means that the way members treat the disease is different.

If you cannot have respect for what works for someone, then please don't even post. You might be passionate about your own medical treatments, which is fine, but that does not give anyone the right to be rude or to bully.