Thanks poopydoop et. al! It’s very humbling to come check the forum and have your virtual comradery. Checked in on father’s day (Sunday) so to beat the surge of patients the rest of the week. His GI...
Awesome!!! Thanks ipoop! always getting us the goods in the UC neighbourhood...
If you’re seeing improvement, it sounds like it’s a good sign things are going in the right direction and just getting going :) When DH was on it, the prescriber said to give it 15-weeks to see real...
I’m happy to hear you’re healing up nicely!...
My husband did great on entivyo...for about 8months. Then came on a flare that just never got under control. You may just need some prednisone to help get things back working again if you’re not too...
Oh my goodness! I’m so sorry to hear you haven’t found relief yet. Do you have to take any other medication now to help with the excessive bathroom trips? Unfortunately I believe he is definitely at...
Are you in the US? Unfortunately in Canada the free cost means a longer wait (6-7 months if you plan like you’re suggesting), unless you’re emergency, which is why we are doing it that way. In which...
Hi valli how are you feeling? How is life with a j pouch? We are going to “check in” Sunday via the ER so we can skip the wait time of 6-7months and get it as emergency surgery. His new normal is not...
Oh wow! Thanks for the input. I looked up the surgeon he had a consultation with last hospital visit, dr. Helen macrae. She’s rated #3 on ratemds.com hoping she does a fine job. I wish his UC was...
NSSG - thanks for the encouragement. The more I read stories like yours, info on the surgery, and the research, the more I feel confident about the outcome. Vicky - you sound pretty similar to what’s...
Hey there, my husband is going through with the surgery next week and I thought I’d surprise him for Father’s Day with a “cool” looking ostomy cover bag I’ve seen some wear. —->>> Anyone know where...
Celeriac - I’m so happy to hear you’re doing better! That’s so scary. I know what your husband was feeling for sure!! That’s how I’ve been watching mine on the sidelines. We also tried remicade prior...
NSSG - so glad you chimed in tbh. I just finished reading your post from 2018 about the surgery process and all of the nitty details. It was really insightful. I think we are nervous about the...
I know I’m on the sidelines to UC, so I can’t ever know just how you all feel with it. It’s nice to know others are getting relief, and I’m glad he was willing to try pretty well everything out...
Thanks! I wasn’t sure if they were side effects since within the first four weeks he wasn’t bad, it’s only been since the 5+ week mark he’s gone downhill. If he continues to show improvement, we will...
A little anecdotal, but curious to know what some might think. Background: My husband has been on xeljanz for just a little over 6-weeks, and only progressively gotten worse to the point he’s getting...
To anyone interested: (I see that there a few views checking in on this post.) I was able to confirm that the surgeon we are seeing/consulting with is, at the time of this post, #3 out of 344...
For anyone who has had the surgery: (FYI cross-posted in optimizes too) My husband is indefinitely getting surgery...just waiting to align some things work wise before he can take the time off. I’m...
My husband is indefinitely getting surgery...just waiting to align some things work wise before he can take the time off. I’m just wondering if anyone recommends (or likewise, doesn’t recommend)...
I would recommend you seek treatment immediately, like at a hospital. It’s possible your drugs are no longer strong enough to fight your flare. UC can go from bad to worse in an instant and just gets...
@mark - thanks for the reply and positive feedback! It’s on the list to try. Tough to find a doc to prescribe it, eh? Oh my goodness, and then finding a pharmacy to dispense it?! Lucky for us, we...
@Mark - I think I’ve seen from prior posts you started LDN. Is this what you’re still taking? May I ask your dosage, and if you’re on the pills or transdermal form etc? I’ve been researching heavily...
@poopydoop - ah thanks for clarifying you were off prednisone! I Feel like I’ve seen more cases in the steroid territory prior to starting. I’ve encouraged my DH to hold off on the preds for a little...
@Hugo - my husband is at the 5-1/2 week mark now of being in xeljanz and is not getting better :( we are so hoping it would be the wonder drug everyone is talking about. (We are in Canada too and...
Hey Suzy q, hows your husband doing on the lower dosages?...
Hi all, found this old post that seems to have gotten resurgence. Just curious if any of the posters could follow up with progress/how they are doing with this treatment? Anyone taking their other...
Xeljanz seems to be working for nearly everyone that starts it. Has it NOT worked for anyone? Just curious. Worried my husband may be the first of this case 😞...
Hi all, just curious how long your flares have been/were? If you go in and out if flares, what is your average flare and remission? I know everyone is different, so this is more for curiosity sake....
@poopydoop - how long were you on xeljanz before you started seeing improvement, or are you still sort of waiting? Just curious....
Wow! Two months is good and you’re seeing improvement. My husband was told the 15-16 week mark is how long to “give it a go”. One patient she had showed no improvements and then on week 16 just,...
Just wanted to follow up on an update to everyone’s progress with xeljanz?...
My husband has been loosely following SCD and IBD-AID for going on 4 weeks now and his flare that has been ongoing for almost a year now has finally gotten under control. It’s probably more of a...
Wow so cool!!! Noticed the article is from Austria. Is this where you are? Do they do this elsewhere in the world? Thanks for posting! Let us know if you try it :)...
MariaMaria - I totally agree! I feel like cutting out an entire food group goes against every foundation of nutrition I know, however, for some strange reason it’s working. My DH is the one with...
Day 5 update of real time experiences on the SCD - Frequency: almost near eliminated Stools: still 1-2x/daily, but formed, minimal to no blood Foods introduced: rice last night = no adverse reaction;...
Hi Levi, have you already cut out dairy? Does it usually give you any problems? I would LOVE to try the SCD yogurt but my husband is worse with dairy! He’s been having better stools the further we...
Just to add, we’ve introduced a banana (brown spots), pretty sure it’s the culprit for causing a lot of gas and cramping in the evening, however, there was still a good poo! Trying out the very well...
Some food for thought: While I have no idea why some foods are “legal”, I’m not going to dispute a microbiologist and her research. I posted a brief update of this week’s entry into SCD land with DH,...
Hi all - this is a bit of a continuation from my initial post/reply on “Diet (SCD especially)....” Brief overview: my husband has moderately severe left-sided UC and has been in an uncontrollable...
Wow! Just catching up on the posts now. So many great tips and reviews. It’s really giving us some hope. Thanks so much!! Will create a separate post about how husband is doing on the diet. Since I...
I’m so excited to hear of real life experiences. Getting hopeful this might work for my husband. He’s in such rough shape and really trying to avoid surgery! Any other tips would be helpful :)...
Super appreciate everyone chiming in on these responses! I’m tempted to also buy the “SCD Lifestyle” ebook. Not sure if it’s a scam or what. Curious to know if anyone has this? Is it worth it? It’s...
Sorry to bring up this old topic again, just wondering if anyone who replied on this thread has stuck with it? Anyone new try it and can chime in since this post? TIA!...
@mom - thanks for the brand recommendation! Have seen it before but wasn’t sure what ones to look at. My understanding is that even if you don’t feel like something isn’t working, doesn’t mean it...
Maybe we are quick to jump the gun to surgery... he’s just sick of being sick. The meds seem to be working for now, with the prednisone, so just seeing if maybe there is something we haven’t tried?...
Hi all, New here but been stalking the threads. Very helpful so thank you! My husband has UC and he is on the brink of surgery in the next few months as he’s had a non-stop flare since beginning of...