I want to have surgery

I don’t want to live in fear of these medications.
https://www.jsonline.com/story/news/investigations/2019/05/30/arthritis-psoriasis-drugs-darker-aspect-34-000-reports-deaths/1206103001/

island time said...
I’m no fan myself.

Tooth extraction 3 months ago. Got better per the book. Pain in socket began one week ago. I now fear, not just infection but, rather, sepsis. The source of the pain will be revealed this week.

I’ve come to a certain “truce” with the fact that my life on this earth is finite. That alone (when I can remember it) lessens the fear. And, in it’s place, a certain freedom that enables us all to live more fully.

In less practical terms, I’m no fan of the knife either.

—-
I feel the same. Like I’ve been given a death sentence on these drugs
On Humira

damo123 said...
It is one of David Rubins best quotes that those people who say they are ready for surgery actually do not need it and those who do not want surgery are probably ready for it!!

35,000 deaths from side affects of biologics? I feel defeated

It's good to do a personal risk assessment. The woman who was the focus of the article was 77 and taking 3 other drugs (not named) at the same time as remicade. It's likely that the other drugs were also immunosuppressive, increasing the risk of a serious infection when remicade was added.
Surgery is not without risks either and once you've done it there's no going back, whereas you can always stop taking a drug.
35,000 deaths "linked to" a drug does not necessary mean the drug caused them.
Also the tone of this article is sensationalist and designed to shock people.
I can understand your feelings and i think most of us have been through those thoughts before starting biologics. There are no simple answers but I think if you would ask for surgery it would not be encouraged at this point in your disease.

Anxious…

I apologize if my post above was unclear. Perhaps it could have been worded better. No where in my post above did I say biologics are a “death sentence”. They are not.

The intent of the post was to let you know I have fears myself. The bottom line of the post was a sharing on my part how I’ve come to cope with them.

“I’ve had a lot of worries in my life, most of which never happened.” -Mark Twain


PS…I agree 1000% that the article is poorly written. To be honest, it reads like a piece a journalist would write in order to sell newspapers.

(Listen to “Take It Easy” by The Eagles 😊👍)

Post Edited (island time) : 12/27/2021 12:18:00 PM (GMT-7)

straydog said...
TAA, if you are interested in reading an excellent post, go to the crohns forum & read the updated post by comedybob, it's about his 9 yr old son's journey. There are members here that have gotten their life back while being on biologics. One thing about forums like Healing Well, we typically see more people suffering posting than the ones that are doing well out living their life. People tend to only hang around when they are not doing well.

Surfing the internet looking for gloom & doom stories is not going to serve you well.

Doctor Google, Dr HW, & Dr. WebMD are not good places to read about symptoms, side effects, and other related issues.

Trust your doctors and especially find a doctor that you can work with - I understand what it is like to have a bad doctor but I also understand what it is like to have a great GI who is confident, knowledgeable and explains everything to me - we work well together. Maybe it’s time to get a second opinion - it might calm your nerves a little bit.

Thanks to everyone who replied. Giving me some different perspective. It’s been hell the last few months. I feel I’m on a knifes edge. A race against time for something to work so I can get off steroids

FlowersGal said...
Hang in there. Biologics have not put an end to my life but done the opposite— given me back a “normal” life again. I am very thankful my dr talked me into my biologic, and very grateful to have had 4+ years (so far) of normality from it. UC is never far from my mind but I don’t worry any more about what my future looks like.

You’re getting close — just the rest of the holidays to get through. I highly recommend a benzodiazepine in the meantime — taken only as needed tho!

I miss when I took this disease for granted. I had good ten years on mesalazine 1g enema nightly for the most part. With the mind set disease progression is rare after five years I thought I would get out of this flare. Now my worst fears are reality. It’s tested my mental health to its core. I will definitely be taking help where I can get it for the anxiety. I will never underestimate my illness again. I pray for relief with entyvio. With God on my side it will see me through to a cure. I just need to stay positive and stop breaking down. I went from a fit, six days a week in the gym to a bloated anxious mess in four months. I find it hard to look in the mirror. My perspective have changed. While I can’t wait to get back into the gym and fit again. I just want to be here for my family for a good while yet, everything else is a bonus

"We all have 2 lives...and the second one starts when we realize we actually only have one"

It's hard to stay positive when one feels miserable and hopeless due to chronic illness. For more than 20 yrs I suffered repeat UC flares while needing to hold a full-time job to keep my health insurance (major problem in the U.S.). What kept me going was the certitude that I could never cope with an ostomy, let alone the surgery to create one. I know how I am in that regard! When I had to limp along on mostly ineffective types of mesalamine then hydrocortisone during flares, I took care to eat as nutritious a diet as I could process; it included a lot of simple foods like farina, bananas, and plain boiled rice with mostly roast poultry or broiled fish, plus steamed or baked veggies. A good friend advised me to look at desserts as if they were "museum pieces"-- enticing but forbidden. I changed doctors to affiliate with a gastroenterologist sub-specializing in IBD treatment. That helped to reduce my flares to moderate from severe, and eventually this doctor enrolled me in an oral drug trial that finally gave me longterm remission via a modified medication with few side effects. I still have recurring health insurance issues over coverage for my crucial medication, as many IBDers do. So along the way to finally achieving remission I readjusted my priorities and expectations many times to keep King Colon functioning as well as possible. (Rather like pursuing reliable dental care instead of ending up with dentures-- except that society is more accommodating to oral health concerns than to ailments involving a person's nether regions!) *** RE fear of dying, it's something that happens to every living creature eventually so we have to learn to accept it. Too much thought about it is mainly a waste of time we could spend on something manageable. / Old Hat (40+ yrs with left-sided UC ... etc.)

From the article:

Somebody said...

Humira was linked to 169,000 reported serious adverse events and 13,000 reports of deaths, followed by Enbrel with 135,000 serious events and 8,000 deaths. Yet neither is among the top 20 prescribed medications in America, according to IQVIA data.

Remicade, the drug Tschannen was taking, had 98,000 reports of serious adverse events, including 6,000 reports of deaths, the analysis found.

Beginning in the early 2000s there was a spike in sepsis cases among people with rheumatoid arthritis. A 2018 paper by researchers at Boston University School of Medicine found that hospitalizations for sepsis more than tripled between 1993 and 2013.

The big uptick seemed to occur beginning in about 2002 when the number jumped from 4,700 cases to 2013, when there were 32,000 cases.

However, the increases coincided with the rise of biologic drugs. In the period between 1999 and 2002, three popular biologics — Remicade (1999), Enbrel (2000) and Humira (2002) — were approved to treat rheumatoid arthritis.

_____________________________

What's important is: if you're on biologics, and you develop a fever, get seen ASAP.

Old Hat said...
It's hard to stay positive when one feels miserable and hopeless due to chronic illness. For more than 20 yrs I suffered repeat UC flares while needing to hold a full-time job to keep my health insurance (major problem in the U.S.). What kept me going was the certitude that I could never cope with an ostomy, let alone the surgery to create one. I know how I am in that regard! When I had to limp along on mostly ineffective types of mesalamine then hydrocortisone during flares, I took care to eat as nutritious a diet as I could process; it included a lot of simple foods like farina, bananas, and plain boiled rice with mostly roast poultry or broiled fish, plus steamed or baked veggies. A good friend advised me to look at desserts as if they were "museum pieces"-- enticing but forbidden. I changed doctors to affiliate with a gastroenterologist sub-specializing in IBD treatment. That helped to reduce my flares to moderate from severe, and eventually this doctor enrolled me in an oral drug trial that finally gave me longterm remission via a modified medication with few side effects. I still have recurring health insurance issues over coverage for my crucial medication, as many IBDers do. So along the way to finally achieving remission I readjusted my priorities and expectations many times to keep King Colon functioning as well as possible. (Rather like pursuing reliable dental care instead of ending up with dentures-- except that society is more accommodating to oral health concerns than to ailments involving a person's nether regions!) *** RE fear of dying, it's something that happens to every living creature eventually so we have to learn to accept it. Too much thought about it is mainly a waste of time we could spend on something manageable. / Old Hat (40+ yrs with left-sided UC ... etc.)

We are definitely privileged in Australia for health care. I fear it will change in the future so it’s definitely something I’m grateful for. I read so many posts about people managing long flares. I’ve had one long flare since my diagnosis. It’s now 30cm of my bowel instead of 8cm. I’ve had a PE, Pancreatitis, and secondary joint inflammation requiring steroids. It’s like my inflammation attacks other parts of my body. I didn’t think my flare was that bad. I wasn’t even getting abdominal pain when I got pancreatitis. I’m not 100% sure it was from my IBD but they can’t find what caused it. Same with the joint inflammation that spread from my elbow, to my knee, into my feet until I was unable to walk. The pain was intense. The PE was obviously due to the dehydration from the pancreatitis as well as inflammation from both pancreatitis and inflamed bowel. I don’t know how people suffer long flares without these things happening. I’ve been in worst flares than this before, though they didn’t last long I was in considerable more pain. I’ve only had pain in the last 3 months of a flare lasting well over a year now. I don’t want to lose my bowel but I don’t want to die from complications from medication because of it either. I’ve just struggled to choose the lesser of the two evils, especially while I’m on pred. My mind feels like it’s racing all the time, so trying to hold my thoughts or process things has been difficult 😞 I feel like I’ve lost myself.

notsosicklygirl said...
Interesting article! What they described happened to me while I was on biologics. I ended up on a ventilator with septic shock. I am lucky I lived.

I think it said 34000 since 2004, but i'd imagine it might be underreported considering it happened to me, and I didn't report it, and I barely made it. It's actually what drove me to have surgery.

Surgery is no walk in the park realistically, but I don't want to be dependent on drugs forever. I've been free of drugs since surgery.

That’s exactly what I’m scared of happening. That isn’t something I’d have hanging over my head if I had my bowel out. Though I’ve read some people end up on them anyway. There isn’t an easy choice. What biologic were you on?

Post Edited (Theanxiousaries) : 12/29/2021 5:11:49 AM (GMT-7)