NCOT- I get the mental state. Stelara is not the last drug to try. There are several trails to sign up for, not the least is the MAP vaccine which is recruiting (or soon to be recruiting) phase 2 for...
Hey Sam...I vote Stelara all the way. I get my injection in the clinic. It’s very convenient & painless. I’m sure you heard me screaming all the way to....Scotland with 4 weekly Humira injections,...
Way to go! This is a long time coming. Fingers crossed....
I haven’t asked him. Great that remission means I have no appointments booked! I can email him though. Omg. I’m obsessive about hygiene. Constantly sanitizing everything/hand washing etc. Even detail...
in a period of a year I had 4 colds. Since I’ve re-entered the work force though I’ve had 5 colds in 4 months. I’m in remission on Stelara but am nervous about the constant virus battle. In July I...
Have you not tried pre-meds like steroids & benedryl? I had screaming knee pain about a year into Stelara. Had to stop ballet classes , sometimes crawled...benadryl stopped that for a year. More...
I’m in remission using stelara! 2.5 years. Best I’ve been in 30 years with IBD. Side effects vary but for me it’s mostly yeast infections. Joint pain is now managed with benedryl for 3 days post...
Ugh. The double whammy. As if CD isn't enough. You can get radiation burns anywhere from tip to tail and it's pretty likely to happen in the intestine for those of us already blessed with a...
I find myself so “envious” of you guys who live outside of Canada & can get this surgery. Not that I want surgery.....but this ridiculous rollercoaster of abscess I & D’s is simply unfair. I have yet...
I wish it was only a matter of surgery that has me anxious about rejoining the work force. It’s never that easy with crohns. Regardless, I started working. It has turned out to be extremely...
Thank you! Will do. Sorry for the delay. Yesterday was hospital day....today is zombie day:)...
Thanks Q! That would be appreciated. Does your friend have CD? We tried 2 surgeons in Calgary. They flat out refused because of Crohns. I got a quote from 2 hospitals in the States but it’s just not...
I know you’re going through hell & the last place you want to be is in emerg....but... Sounds like an abscess. It needs to be surgically drained....
Sorry Stray....I wasn’t clear. I’ve had 12 surgeries in 2.5 years. Now I need the 13th. I’m just days away from starting my first job in 7 yrs when this happened. Mark- same area. Perianal...
Lucky me. I'm facing surgery # 13. Ive had 12 surgeries in 2.5 years for perianal abscessing. I've probably had 6-8 MRIs / CT's with contrast during that time as well. I had a horrible experience...
Thanks for the response Delta. I'm hoping others will chime in, otherwise it's crickets here. 2 weeks ago I was ecstatic about returning to work....a challenge for sure but I was looking forward to...
All inflammatory markers are perfect, including my calprotectin which is 15!! Yet I have another abscess. How is this even possible? I'm doing amazingly well other wise. I'd even say perfect. I'm due...
Definitely need biologics/enemas in combination with aza. Remicade is generally the first choice for biologic....
Sounds like you need much more than aZa. It often works in combination. What else have you tried?...
Thanks, from a fellow Canadian🇨🇦...
Hi Matthew, Haven't read the entire thread so I apologize if this has already been answered. Where did you get the plants from? Or seeds? I was using CannTrust but they're no longer around. Although...
amz-- Welcome to the forum. I'm sorry you're going through this. I can "hear" your stress. I can relate to the brain fog, inability to concentrate and having this terrible disease at a young age....
Unless you were threatening suicidal tendencies.....I’m shocked at the outrageous overreaction. I’m still not understanding why your GI isn’t involved. I totally get being burnt out. Can you mom...
You shouldn’t need an appointment to get this sorted. The secretary should pass on the message and help get this seen to ASAP. You could also send him/her an email. My GI & all my docs have email...
Geez. That sounds like a real poop show! I sent u an email earlier in the summer. Unsure if you got it. My 1st Stelara was also an injection & I continue to go to the infusion center 10 min away for...
Hey Q, Nothing new. Monthly Ivig. It takes an hour to get a vein. Puts nurses behind and makes my 6 hr day longer. I’m all scar tissue now with no accessible veins. This year has been brutal....the...
Hi Susie, I had my port inserted last Wed. It went well & the staff were excellent. I did have to educate them on CD as they kept referring to my oncologist; which of course I don’t have. I have...
https://academic.oup.com/ecco-jcc/article-abstract/13/Supplement_1/S450/5301218?redirectedFrom=fulltext P661 Early histological improvement demonstrated with oral ozanimod in patients with moderately...
Some have success with the nicotine patch....
@lamb—-I hear you. There are several drugs in Phase 2-3 trials including TiGenix Cx601 (I think), REstore, filgotinib, MAP vaccine... several more. Any chance of entering a trial or heading to Mayo?...
Exit- thank you. This is another option in my location as well. Very poor results for fistula closure. How disappointing especially for you. So sorry you are going through this. I’m curious as to why...
Thanks Karen, My doc suggested I keep at it for another couple of weeks. I hope these side effects subside soon. Today is only marginally better...but I’ve had days without any side effects so I’m...
I commend you Lab for doing the right thing!! It’s not surprising that she may project her anger & fears on you for getting help that she needs. If she sends hurtful texts blaming you take it with a...
I've been on 10mg of Nortriptyline for almost 3 weeks. I've found that if I don't get enough sleep I have side effects such as feeling breathless, light headed and dizzy. At times my heart pounds....
Here’s hoping. Good news is that there’s lots of new drugs. Bad news ; no cure. How are you doing Minnie?...
https://www.pmlive.com/pharma_news/latecomer_lilly_preps_its_il-23_drug_for_crohns_disease_1288959?SQ_DESIGN_NAME=2& Eli Lilly’s IL-23 inhibitor mirikizumab is trailing the field in lead indication...
Thanks Susie! I found Dave’s post too. I’m not sure if it’s been approved for CD but my GI would likely be able to get it for me due to the dual diagnosis of UC. He seems quite savvy with these...
Weighing my options. Not only has Stelara failed after 2 years of blissful remission, it's now attacking my joints. My knees are the absolute worst but my shoulders, neck , fingers ...anywhere I have...
Simply put—it’s your body & you can refuse to do one of you don’t feel it’s necessary....
Thanks Susie. I read the port answer. Foam enemas would go through tract & burn my lady bits...that was 3 years ago. I’m thinking there’s some correlation between suppositories & my butt pressure...
Yes. I know when I’m heading for trouble because my hands are stiff & burn first thing in the morning....
Anyone with fistulas know if suppositories are safe to use? I’m wondering if they can dissolve into the tract & clog it? Thanks...
Thank you so much Susie. I’ve had PICC’s with every hospital visit so I should be ok. Just really struggling with PTSD & im sure anxiety will creep in as the day approaches. This will be a forever...
Thank you songlady-- Lidocaine is a good tip. I haven't looked up how it is they access the port. Perhaps I'm afraid I'll change my mind! Honestly though, this has to be done. I'm also a little...
Hi Susie, Thanks for sharing you have a port. Mine gets “installed” next month. Are there any downsides to getting one? Have you had any issues with it? Thanks so much....
I have the worst veins. Most times it’s 4-9 pokes, they call several nurses etc. Very painful getting an iv in my wrist. It’s gotten to the point where I have anxiety about even getting blood drawn....
The Canadian health system has it’s downfalls. Since I’ve had fistulas I’ve found it to be incredibly conservative in comparison to the rest of the world. Im still blessed to be 1st generation...
Geez. I’m so sorry to hear you’re going through this. It’s normal to be fearful, uncertain about your future, scared, depressed etc. Worse when you don’t have family to turn to for support. But, you...
Good memory KS. I need a referral to one. Knee pain is screaming today. Had to hire someone to walk my dog as I’m not able to function. This disease really sucks. If it’s not pooping myself, or...
It’s not necessarily as cut & dry that biologics take a while to work. I was overnight better on Remicade. Flared when I got my 1st dose and the next day went to the mall & dinner. Humira took the...