Board activity?

@xy123 - Oh okay. That's kind of sad to hear. Where do all the people with Crohn's or UC go to? That's bugging me now. Googling Crohn's forum comes up with very little from what I can see: the top two sites are crap, to put it shortly. The forums have hardly any replies.

Absolutely amazing, and depressing, that there doesn't seem to be a large, well established, IBD community anywhere on the internet.

a moderator said...
"My dr says foods will not cause a true flare...
Since you are new to all of this, I suggest you check out CCFA.org. It is a great site to read & learn about the disease & medications used to treat it. You have to be careful reading on the internet because there is a ton of inaccurate information out there."

What good is a forum if alternatives that worked for some of us and we share with others are pooh-poohed (pun intended) by those with 'pro-med' prejudices? Why not just stick with only what your doctor says or go to CCFA.org in the first place and bypass this forum altogether?

This forum could be a rich resource about diet and supplements etc., knowledge not generally obtained from the medical establishment. It would help if we had at least one moderator who was more open minded.

Yeah, it's ridiculous to suggest that people aren't allowed to talk about diets and supplements on here. There's been loads of threads on various supplements and alternative therapies, particularly on the UC forum. If you take a visit to the front page of the UC forum right now, there are a few threads on probiotics.

What gets people's backs up (and not just moderators by the way) are if you start throwing around the word 'cure'. Selling stuff is also a big no-no. But apart from those two things, people can talk about what they like until the cows come home.

Miranda, does Entyvio help you?

I am lying on a hospital bed with an abscess drainage catheter on my left side. Hurt like hell when they inserted that to me.

You can try double the dose or intervals for remicade or humira, in addition to a higher 6mp dose.

I have the same problems. Tried everything under the sun. 6mp and cimzia not working. We don’t consider re-trying entyvio again, low effectiveness for crohns, takes a lot of time to judge if it is working or not.

The state I am living in (don’t ask where) doesn’t want to pay for stelara, it’s a ****ing joke.

Anyway, I will try to get some sleep before the nurse comes to poke another needle on my arm.

Good night, sweet dreams...

Post Edited (xy123) : 6/15/2019 6:14:37 PM (GMT-6)

Thank you. It’s good that your disease is less widespread. You might get a better response from combination therapy, I think. If 6mp is helpful for you, I wouldn’t stop it, but add a biologic to the regimen. If you haven’t tried cimzia yet, it could be a better option, since your body has not been exposed to it, antibody issue would be better (the 6mp you have been using would also be “protective” of antibody formation also). That’s why I have been using cimzia instead of remicade or humira.

I will talk to my GI doctor about stelara again this week. The state does not want to pay for the loading dose. That’s the issue. In our opinion the loading dose is important for success in treatment.

Well I'm still on Entyvio - in fact my next infusion is due on Tuesday. As for Cimzia, I don't think that's available in the UK for Crohn's, although I'm not 100% sure. If Simponi is available, that might be another option too.

Ah right re Stelara. Completely agreed, the high loading doses are necessary for getting the drug into the body quickly and bringing the inflammation under control. I had a discussion about that once with my GI. It was about Remicade and not Stelara, but basically he said that in some people, the amount of inflammation was so high the standard dose of Remicade was not enough to neutralise all the TNF cells and 2, 3 or even 4x doses were required. He thought that was probably why Remicade had failed for me.

I hope you get the Stelara.

NiceCupOfTea said...

I had a discussion about that once with my GI. It was about Remicade and not Stelara, but basically he said that in some people, the amount of inflammation was so high the standard dose of Remicade was not enough to neutralise all the TNF cells and 2, 3 or even 4x doses were required. He thought that was probably why Remicade had failed for me.

Btw, that’s an ınteresting explanation, thanks for sharing.

Don’t feel bad, I am happy for you. I hope the stelara will put an end to “the fun” for you at last. Mine has not ended in seven years.

My abscesses have gotten much better though, the catheter and the antibiotics have worked well.

We are pushing for the stelara, but we are also considering switching to humira from cimzia, but instead of the standard bi-weekly humira injections, I can take them weekly. Might make a difference.

Post Edited (xy123) : 6/20/2019 1:25:35 PM (GMT-6)

Hi Miranda, sorry for the delay in response. I didn’t want to write before I talk to my GI about what we will do regarding the treatment.

We will probably start humira, first the loading doses then weekly injections. I have tried weekly humira with imuran before without success, but at that time I was severely ill, which was before my resection surgery. The surgery helped a lot, so is learning about my food sensitivities and adjusting my diet according to them.

I have been living with a stoma for the last 3.5 years. The thing that worried us most is the fact that the abscesses are formed in the surgically diverted, unused area (stump?). Makes you think if this happened in the area that’s not been used for years, what might happen in the same area if we make an anastomosis...

On permanent stoma: I won’t go down that road unless I have no other choice. Total proctocolectomy is risky for men, and living with a stoma is not good. It isn’t terrible, but I try to avoid it if I can. If it meant a cure like it is for UC, that would be a consolation at least; but you still have to face Crohn’s all your life, even the risk of short bowel syndrome.

P.S. I will be looking forward to your updates on your experiences with Stelara. Hoping it will resolve your issues completely.

Post Edited (xy123) : 7/12/2019 4:42:01 AM (GMT-6)

I might also add it let you see who made the last post so it was easy to see if someone had added a comment since you had last read that particular thread. All that is gone, now it’s just not user friendly.