I’ve recently resumed a more normal diet after a long flare time, and find I’m ok if I introduce things very gradually. But, fresh corn and popcorn are just too troublesome to go back to, for me. I...
Sassy, I'm on remicade, not Entyvio, but it was the switch to 4 weeks infusions that really helped me turn the corner. I started the 4 week schedule in Dec and started noticing significant...
Good luck, that’s an encouraging sign. I hope AIP works well for you....
Thanks for all the responses. Hmm I’m glad I mentioned that about the mesalazine. I did try to wean from 4 to 3 a while back and thought it caused me trouble. At that time I was still feeling poorly...
Not much news from my gastro doc appointment - after I reported my feeling much better status she advised status quo for 3 months and then reevaluate. Calprotectin test will be in June so that should...
Thanks everyone, I appreciate the advice and will heed it and go slow. I really don’t want to risk losing the way I feel now. OldMike, very true! I didn’t enjoy being 92 lbs I must say, I felt very...
Thanks, very interesting and encouraging. I’m over-excited with suddenly feeling well, but I’m actually quite cautious by nature, so no impulsive moves are likely. It certainly remains to be seen if...
Well, I currently weigh 98 lbs, up from 92 (42 kg) when I started Remicade in July '23. (Normal was 110). I currently receive 600 mg every 4 weeks. So dose around 13 or 14 per kg I guess. I was told...
Hi, I’m currently on Remicade every 4 weeks, dose 600 mg (~ 12/kg). I started Remicade in July 2023 at 200 mg every 8 weeks, increased to 400 mg every 4 weeks in Oct '23, and then was increased to my...
Flowers girl, that’s my experience too, makes for a not very relaxing bath 😝. Always educational on this site - I thought that was just the way it was. Not surprising though as it happens often...
So nice, and encouraging, to hear this good news!...
Sassy, I had nightmares while on Entyvio, but not for long. As I recall it started after the ramp up doses, and continued for a short while and then disappeared. Very upsetting! As for the stomach...
Thanks OldHat. I did a lookup when Poopydoop mentioned Boots as a UK source, and reviewers of all the brands indicate just what you’re saying - that the quality isn’t what it used to be....
Thanks Poopydoop, that’s exactly the sort of thing I'm trying to avoid! I’ll pay attention to those locks. And thanks Sassy also. I cancelled several trips in the past few years due to an extended...
Hi, I have a few questions for the UK members among us please. I’ll be travelling to the UK and wanted to know if the incontinence pads I wear daily (Poise Incontinence Pads for Women, Maximum...
Very good to hear!!...
Prior to starting Entyvio in fall 2022 I had bloodwork to check for measles immunity and was told that I had immunity. I’m 66 and either had measles or the vaccinations as a child, not sure which....
I’m late to this party but chiming in to say I had this problem for years. Based on the replies I’m guessing there are different packaging types for this product. I received mine sealed up in white...
Katkat, sorry you’re feeling poorly. I see you listed ferrous fumarate - are you anemic? If so, that could contribute to the dizziness and brain fog. If you’re annemic and can’t tolerate the iron...
Hmm, I think the word 'diet' in the name is confusing things here. The term Mediterranean diet doesn’t refer to a diet plan, like SCD or others, but just a term which refers to foods typically eaten...
Sassy, in case it's of interest, I just watched this new seminar on the Crohns and Colitis Canada site yesterday. I found it quite informative and some of the research is quite new, although the med...
Nothing helpful to add, but glad to hear some of your pain is being managed!...
I had a similar reaction during my Entyvio induction phase, felt energetic, hungry, and symptoms seemed to subside considerably, if just for a short while. During that time I did think 'yahoo' and...
Fabulous news to hear!!...
Flowers - interesting info, I’m 66 so what you heard at 70 is definitely relevant. I should probably speak to my doctor re what the plan would be if the meds don’t pan out in the next (not too long)...
Thank you 3x (and Clo). I totally agree with Poopydoop, hearing these experiences really reduces the worry about potential surgery in the future. One thing I do wonder about is how advancing older...
Oh, yet another example of how we all react differently to medications! Probably explains why some doctors discourage the use of Pico, perhaps it’s less of a sure thing than the large volume ones....
Miracles, I haven’t, but reading about it (on MedScape) it sounds very similar to Pico Salex. Low volume and neutral / lemony flavour. Good luck with your scope and the trial!...
Miracles, I’ve never heard of pills for prep, sounds intriguing. Did the doc give you a product name? (An aside, not that it’s useful to you now, sorry…. I recently read a U.S. study which seemed to...
Hi. What you describe is, for me, a sign of flare. My doctor said that putting food in the mouth (or even thinking about eating, seeing a food advertisement, or cooking) starts the digestive juices...
Happy holidays and a very healthy new year to everyone. Thanks for the great support over the past year....
Welcome, and hope you’re feeling better soon. A good source for eating advice is on sites like Crohn's and Colitis Canada, celiac.ca, celiac.org, Crohn's and Colitis foundation.org. Most of these...
Hi Sassy, sorry things are crappy. Sure you feel sorry for yourself when things turn around like that! You can truly drive yourself crazy trying to determine what’s causing your symptoms day to day,...
Sorry to hear you’re feeling so low, Conquer UC. Venting here is a good thing to do, it allows you to let off steam where people understand what you’re talking about. This time last year I was...
Glad you got through the first one without too much trouble Sassy. Good luck on the 22!...
Glad to hear the news is good on the scope! Late to this party but in case it’s useful at all…. A few years ago I read a post by a crohns patient / advocate about colonoscopy prep and her way of...
I like water crackers because they’re pretty benign from the point of view of salt, sugar, fat etc and so if I have trouble I can pretty much be sure it’s not the crackers. They’re pretty boring...
I had a calprotectin over 10,000 last February (I’m down to around 3000 as of last month) I had had a weeks-long flare a few months earlier (10-15 x per day, no fever, bloat or pain so no suggestion...
I’d suggest googling something like 'healthy no sugar dairy-free snack recipe' (or including the word vegan will also make sure there’s no dairy) and wade through the results looking for ones from...
I had my first Entyvio treatment in early December last year, and had many of the same worries about the Christmas season activities etc. I found that I was not impacted at all and generally felt a...
Thanks all. I haven’t got a number, it just says failed. Probably just a small amount. Yes I’m eating tons of carbs, I’m a bread and pasta lover. I’m guessing it’s the same situation at bacon girl...
Oooh, that's one for the books for sure, poor you! Yes, it’s a disease of serial humiliations for sure....
I’m not sure how or why it’s working this way here, but since I started Entyvio and confusing with remicade now, every three months my poop test is delivered to the front door by FedEx in a plain...
Hi all, has anyone has had experience with ketones in their urine? I just got a lab report back and it shows that result. I’m not diabetic, which is apparently the usual source of that result. I do...
Sugar and milk products (with lactose - I’m ok w lactose free) anre also a problem for me. Although I usually don’t keep temptations in the house, I caused myself some grief including lots of noise...
Thanks all. I didn’t realize endocrinologists dealt with osteoporosis, good to know. Hopefully the prescribed drug won’t cause any gut issues but if it does I’ll look for a referral. All these meds...
Hi all, is anyone taking a Bisphosphinate successfully? I just found out I have osteoporosis (without ever being on steroids!) and the family doc wants me on a bisphosphinate, Risedronate. I see some...
Me again, I just noticed your comment about anemia Sassy, and wanted to mention that my GI arranged for me to have iron infusions because I was anemic and found the pills extremely painful in...
Hi Sassy, I looked into getting infusions in europe and the US (I’m in Ontario) and it sounded like a very daunting task. You have to bring your drug with you, and it has to be kept at a certain...
Hahaha this forum always helps normalize! I thought I was the only one nerdy enough to graph my output :) Re: counting, I’ve always counted all times I need to go even if it’s just blood, but I do...