Clo, ditto what you said: “So I think that for all of us... Surgery represents a point where our quality of health and life have become unacceptable to us and we decide enough is enough. Sometimes...
TAM, I wish you all the best. I remember you are one of the long time UC veterans, back from when I first started looking at the forum in 2011. I hope you can achieve a long lasting remission....
Thanks Old Mike, noted. Thanks Joanna for the suggestions. The problem is I can't take 6 MP either. I took it years ago for over 3 months and during those months I became really unwell with EBV which...
Clo: no I cannot take Melatonin. It makes me super tired but I still cannot sleep. And end up really groggy the next day. Iam glad it helps you though. I hope you can get into remission with the...
Thanks for the clarification Quincy. Old Mike: Is this the brand you mentioned? https://realketonesaustralia.com/collections/all/products/copy-of-weight-loss-d-bhb-ketone-powder-stick-packs How many...
Oh and Clo: try sublingual Vit D Spray. I personally could only bring up my vit D effectively with the sublingual spray. Also, I can’t tolerate oral vit D as it causes me terrible constipation where...
Clo: interesting what that lady in your support group mentioned, as this has been similar to my experience. I almost break out over night in a some kind of severe proctitis flare. I second OM re the...
Oh and forgot to mention re the Isatis Cooling: yes Iam still on that. Only x3 capsules/day (full dose is 9/d). I tried stopping it twice but things get worse when I stop it. I think even in the...
Clo: I'm sorry that you went through that. So you got the obstruction on the plant-based diet? We dietitians usually say to do a low roughage version of the Mediterranean diet when flaring. Which...
Old Mike: yes that was me on Reddit haha. I have started posting there and here as well. Sometimes same post and sometimes different. There is more traffic there so you get more varied responses. But...
TLDR; Can immunosuppressants worsen proctitis? Refractory proctitis that doesn't respond to mesalamines, pred, budesonide, Entyvio, Rinvoq, Stelara. And many of these actually worsened the...
Oh goodness! Iam sorry that you are still struggling with all these functional GI issues Joanna! Here are my thoughts: - do a comprehensive GI mapping test: the one where they use PCR to check for...
Hey Sassy! Yep an antihistamine the day of the infusion. And even for 1-2 days after, is a good idea. Hydration is super important. Re the iron: try Iron bisglycinate taken on empty stomach with some...
Thanks Flowers and Midge for the kind words of support :) I always feel humbled when I read about other people's UC journeys. Because it is easy to feel lonely with this disease. Then when I come...
I guess it depends on symptoms. My GI told me, back when I was taking Rinvoq, that if I felt really unwell I could stop it for a few days, or take it every second day....
Hey there Joanna, Oh wow, Iam sorry about this trouble you are dealing with. That sure does sound frustrating. Did you manage to "grow out "of the food allergies you got in your first bad flare? If...
Oh darn! I'm sorry Joanna that you are still having symptoms that are affecting your quality of life. I hate it when this happens: med works but side-effects or something else is amiss and you are...
Rinvoq loading dose worked for me quickly and within 5 days I was having normal poops. But then I failed it within 5 months. So how fast you respond is not an indicator of how long it will last....
Thanks Quincy and Bacon girl! All good Quincy, it's hard to remember what everyone is allergic to with all of us on this forum. I should probably note it in my signature. With Xifaxin I suppose my GI...
Thanks Flowers <3 It's good to hear from someone on the other side that it does get better. We all need hope, sometimes that's all we have to look forward to....
Iam sorry you had to deal with all this. Personally I’ve never head of a dual diagnosis of Crohns and Ulcerative Colitis. Usually it’s one or the other. With Crohn’s the inflammation is usually...
Thank you everyone for taking the time to respond. I just did another batch of blood tests and stools tests (inc C Diff) today. We’ll see what comes up. The weirdest thing is how steroids now make my...
I just got a call from my GI’s nurse and she sounded really alarmed, she said she just got the results back and my calprotectin is higher than anything they have ever seen before in their practice....
Thanks so much Joanna and Flowers for taking the time to respond and for the detailed replies :) I'll definitely keep these recommendations in mind should the headaches resurface. I have noticed the...
Did you try the RDHLA Coyote?...
Thank you for the replies. Much appreciated. @straydog: I don't normally get headaches that frequently. I usually just stick to Panadol for them since we have to avoid the NSAIDs. And interesting...
Hi there fellow champs, Iam now about 7 weeks into Stelara. Iam almost due for second dose, which is a subcutaneous injection rather than an infusion like the first dose. I have been having strange...
Hi Wayne, Iam sorry you are dealing with the dilemma of high calprotectin and low/no symptoms. Welcome to my world!!! This regularly happened to me in the past. I have almost stopped checking...
Iam currently studying this course on IBD for dietitians (Iam a dietitian), and they say that https://usprobioticguide.com is a good source of info on which probiotics are effective and what for....
This is ridiculous! Security fears are not valid excuses for this discrimination. They can simply search the backpack or put it through x-ray equipment. This is like saying airline passengers are not...
I have been doing quite a few searches on Stelara and how long it takes to kick in etc. And from what I read on Reddit and this forum, it seems that most people with IBD (UC in particular) end up...
No one in my family has any IBD diagnosis. I have some family members (mostly aunts from dad's side) with "irritable" bowels. Eg they can get diarrhoea when stressed or if they eat certain foods. But...
Thanks Clo for the suggestions. I'll definitely do something similar for the injections. Thanks Joanna for the check-up. Things got better and it seemed to to have only occurred on the day of the...
Thanks Midge I'll keep that in mind :)...
I second some of the replies that rectal meds are a must with this disease. The inflammation starts in the rectum and ends there as well and that area is also the most stubborn to treat. They may...
Iam sorry that you guys are dealing with this. I hope you all find relief soon. Just one thing I wanted to mention: synthetic vitamin C supplements can increase risk of kidney stones. Since the use...
My experience with Entyvio is that I felt more anxious and depressed on it than my usual. Significantly more so. And I felt these vague joint pains on it too. However, Entyvio never lowered my...
Thanks for the replies :) U B Tough: great name by the way. Iam sorry you suffered side effects from Stelara. It's always hard when a med causes side effects because you have to balance them with...
Poopydoop: thank you. Yeh that’s what Iam thinking too. I have started the Stelara anyway. I think it’s still an option though as it works on both JAK1 and JAK3, where as the Rinvoq works more on...
Hello there, Iam still on 10 mg pred (via enema) and 15 mg Rinvoq and I had my first Stelara infusion yesterday. The infusion itself went smoothly. However about 6 hours afterwards I felt this...
Hey there UC champs! So Iam waiting for my first Stelara infusion next week. Iam still flaring despite the pred enemas and Rinvoq and now my face is puffy because of the pred (and yes pred enemas...
Iam sorry you are flaring. Entocort, as I understand and as has been relayed to me by more than one GI, does not reach that well into the distal portion of the large intestine (rectosigmoid) which is...
Hi Minnie, Iam sorry you are in so much pain! I don't know about combining biologics. I have also been wondering about that for myself too actually. Because I failed Entyvio within 18 months, and...
Thanks for the replies! Yep Xeljanz has been on my mind. But as Iam not responding to Rinvoq anymore, i seemed to have failed it rather quickly within just 6 months, Iam not too keen to try another...
Tblock: it is great that you are in remission now, I hope you continue to feel well and the remission lasts forever....
So happy for you Wayne!! Here is to a lifelong remission! It is always great to hear or read about someone in remission and doing well. It gives the rest of us hope....
Thanks for the support guys Joanna: yeh it’s crazy how GIs can have such different opinions on managing the same disease. I just didn’t feel like this GI was getting it. She is younger than my usual...
Needless to say there were many tears. I haven’t cancelled just yet but there doesn’t seem to be another option as Stelara takes 2-4 weeks to approve. And the trip is 7 weeks away. Even if I can get...
Oh and that long-awaited month long holiday (been planning it for more than a year) is looking bust. It is a 15 hour flight plus transit for a few hours then another 2.5 hour flight. I just don’t...
geezer: thank you for the reply. I’ve gone back to my old GI because the new one is proposing some weird theories. She thinks that the symptoms I have are constipation primarily. And that the blood...