Helminth Therapy

I am sorry to hear it too Mark. I was hoping for positive news. I think you should perhaps find a new GI. It sounds like yours is not doing his best to help you. Did you say you live in an area with limited options?

iPoop said...
>iPoop, I just had remission for 2 years with no meds, so I'm not ready to consider colectomy.
Unfortunately the past does not dictate the future.

That's not very supportive.

iPoop said...
Sometimes we need hard truths, it is that I am actually going for (not what you suggest). I cannot use my past to predict my future. I know in the past you were able to use these methods and you aspire to do the same again. Just make a game plan, what you are trying and how long you are willing to invest in each. As months and years can whoosh by why we try everything under the sun, all while suffering.

Frankly, I am very worried about you. Dropping weight, of low BMI and stubborn about what treatments you'll do. Trying unconventional treatments like Helminth. Told you about the poster a couple years back who had a lot of similarities and ended up dying...

I've never had a flare last longer than 7 months. Still, 7 months is a long time.

I agree the past does not dictate the future, but the past isn't nothing either.

The loss of time is indeed hard to bear. On the other hand, I have read many surgery horror stories. Speaking of hard truths, If I'm one of the people it doesn't go well for and I end up in long-term intractable suffering that cannot be undone because my body has been permanently changed by surgery, I guarantee 100% that I would commit suicide. At least with UC, I get periods of remission and freedom, even if they don't last. I won't trade one bad situation for a possibly worse situation.

I'm stubborn because the options are terrible, and fate has not smiled kindly on my options. I get all the rare side effects, and I'm always the <10% who has some kind of major complication. Then guess what? More suffering! Modern medicine hasn't worked for me because their medicines are hack jobs, just like the people who design them are. I won't trust them to administer drugs so I'm even less likely to trust them with giving me a colectomy.

I'm not sure what the other poster has to do with this. I'm not dying.

Post Edited (MarkWithIBD) : 12/12/2019 2:42:23 PM (GMT-7)

iPoop said...
I truly get where you are coming from, but I do think you are very afraid of very small risks. I am aware that remicade can kill me, but the odds are so small I do not worry about it. As it is far more dangerous to get within an automobile, as the odds are 1 in 133 of death in a car crash within the usa. There was an article about someone who died after being licked by a dog, again the odds of that are 1 in a some billions, so I am not going to avoid dog kisses. Odds of botched surgeries to the point nothing can be done are similar to the dog lick case. You were posting about xeljanz about the scary risks of it, same thing.

The parallel between you and the other poster, is you both share the same mindset. You both desire to solve this whole UC problem yourself, avoid treatments you could have. He was a low BMI. Struggled a lot, and often commented about the how our meds were so dangerous. He was fond of alternatives too.

Now it seems like you're scaremongering. Surely that poster wasn't the only person in the history of HW who used alternative therapies to get better? One person in how many died?

I wouldn't be doing alternatives if I was on death's door. My BMI is low but my body is otherwise healthy. Beginning of normal BMI range is 18.5 and mine is 17.0. I have always been skinny, even when healthy. Blood work shows normal organ function and everything. Hemoglobin could be better, I admit... but what else is new.

So it seems like I have time and physical resource to investigate alternatives.

The reason why I was critical of Xeljanz is because some doctors scare patients with the risk of colorectal cancer if they don't get their UC under control, but statistically you are almost equally as likely to get one of the bad long-term drug effects as you are CRC. The reality is we don't look at those statistics because they're not what motivates us to try new drugs, it's that we want our symptoms to maybe go away.

I think a 17% remission rate for a drug is pretty lousy. I would accept more temporary suffering if the chances were better. Besides, I failed most other biologics, so it's not exactly about me resisting modern medicine, it's that it doesn't seem to work on me too well.

Mark, placebo effect is responsible up to 30 % of total effect of a medication. If you are constantly reading and thinking about adverse effects of drugs you might experience nocebo effect. It means that after taking otherwise good drug your subconscious mind starts searching for problems (side effects) and exaggerate them. As a result you stop taking the drug (or decrease dose) prematurely. Drug does not have enough time to work out. This confirms your believe that it is not worth to take this drug. It is vicious circle. Break the circle in your mind!

quincy said...
Mark. How I see it...we, who have mentioned the other now deceased member, recognise the same in both of you. What you say and have done seems to have scared us. What you continue to say creates a scenario we have heard before....until...

Respectfully and obviously your decisions are yours, however, if you took a step back and read all your responses as someone else, what support would you offer?

q

^This. Seems Quincy and I are seeing this situation about the same. You are a very knowledgeable person, but are certainly clouded by fear. Read a number of your posts where it sounds like that fear is talking. We're all family, brothers and sisters, in this awful illness, and as such we're a bit frank to each other at time when it's warranted (and it can certainly be taken the wrong way if it goes against your assessment of the situation). We're trying to be supportive and give you a nudge to get you out of this quagmire you are in (nothing's working, your frustrated and angry by that fact, and do not have a clear path on what to try next. So you wait.). It's always your decision to make.

Edited: Watch it Mark, we're trying to help, attacking all of us is not necessary or appropriate for this forum. I removed the contents of this post as you were attacking pretty much everyone who had responded within this thread, which is against forum rules, and would certainly trigger others to attack back.

Post Edited By Moderator (iPoop) : 12/13/2019 2:04:57 PM (GMT-7)

Edited. Deleted more flaming, you're not listening. Rule violations up the waazoo. You've been very rude to all of us here, repeatedly, despite ample warnings given. Temporary ban placed on account. I truly hope you find a remission, whatever way that might be.

Post Edited By Moderator (iPoop) : 12/14/2019 6:44:00 AM (GMT-7)

I remembered that you got upset with me before so I went looking for that thread. I missed it when I looked before. I did make some comments on the thread you posted when you were in the hospital. I asked some questions and you got upset with me much like you have above.

For whatever reason I am not coming across to you the way I intend so if you ever do post again I will not ever comment again .... unless it's to congratulate you for finding remission!