Most excellent news Sara! The “R” club is pretty sweet!...
Any update 73?...
Well... I'm officially a bada$$ and got my first (and likely only ) tat last Wednesday. I figured if my port didn't cause a PG flare then I should be safe with a tattoo. I've had no issues with my...
Wonderful news!! I hope it works as well for her as it's done for me....
I did 40 HBO treatments. It has to be done consecutively for it to take. It was a massive commitment especially when I was so sick. It closed my RVF but did not help with the other fistulas. I...
Continuing to do amazingly well. I have a history of PG (legs) but that's been in remission for years. Crohns is in remission with Stelara and supplements I'd like to get a small tattoo on my...
I would highly recommend Healing Bottoms turmeric suppositories. They’ve worked amazing well for me....
Thank you both. I’ve just emailed her again. Will let u know if I hear from her.......
Anyone heard from her? We've been communicating rather consistently via email but I haven't received a response back and it's been over a month....Her last email was troubling....too many health...
Stelara and imuran- nothing else worked. I add turmeric, oral and suppositories, when I feel like my fistulas may be an issue. I steady and healthy....
Not sure if this has been covered or is relevant....(it's been a while since I've checked in) Stelara - nearly destroyed my knees - rheumatologist suggested I continue to take premeds 3-5 or even 7...
Remi gives you D?!! Wow. I'm so sorry to hear this. My suggestion would be to continue taking "pre meds" including imodium post infusion. I had the most painful knees about 2 years into Stelara. I...
OMG- that was 5 hours of hell. I'm sure my neighbors heard me screaming. As soon as it passed I was better. I was sweating, shivering, lying on the bathroom floor with blankets and a heating pad. Fun...
I’m screaming on the toilet & sweating so much. I got a dulcolax suppository & it’s been in for 20 min. It’s burning so bad & nothing coming out. I can’t sit down because of this rock of poop & im...
Thank you @Flowers. I actually don't think I can drive to the drug store I'm so uncomfortable. I'm walking like I have something stuck up there because I do! It seriously feels impacted. I'll try to...
Never thought I'd be writing about this issue! Last bm was Tues. Since then I'm having difficulty passing anything but a tiny hard rock. Nothing today so far despite the urge to go. Aside from water,...
Thanks everyone. Special hello to you Q:) It’s not Covid. I did think of calling my doc but I’m not sure what they’ll do. May just have to ride it out. I’m feeling a bit better & functioning. We’ll...
Anyone else absolutely flat on their back due to booster? 10 days prior to booster, Stelara 3 days prior IVIG I think this might have been too much for my body. I had momentary dizziness after...
Wow. Clo! I hear you. It’s extremely traumatic! Yes, I think it’s some kind of allergic reaction. No more burning since I started benedryl. I’ve been itching like mad....even my eye balls. Hopefully...
Hi Clo- nice to hear from you. I'm sorry that you too suffer with PG. This is such a hideous disease!! I don't have a derma, since I've not had PG issues for years. I haven't had a response from my...
Thanks Sara14....I’ll look into that. Only side effect I’ve had was yeast infections in the 3rd year. That cleared up. Sometime I’m nauseated or headache but remission is fantastic. So far no rash....
Posting on the UC side for more input) I have a history of PG which has (thankfully) been in remission for years due to IVIG treatment. Friday evening, hours after my Stelara injection my PG scar on...
From Canada- Imuran and Stelara both qualify for the booster shot regardless of age. I get mine in 2 weeks - post my last Stelara injection....
NCOT- Yes, it was Canada Mark who helped connect me with MAP and with the testing. My reading was off the charts. My GI was able to get the blood work done "off the record" and I sent it in. He's...
You know who didn't get CERB...the disabled; those who actually need it; like me! (But you already know what i'm doing to fix that NCOT!) I'm glad you're moving forward with surgery, though I...
Whoa...this is awesome. I have (possibly had) extremely high levels of MAP..... NCOT - if you're reading this...did you ever get tested for MAP?...
Hi There! Stelara totally saved me from fistula hell. I started in May 2017 and still on it every 8 weeks. I've only had 1 abscess since and am very stable. If I ever wobble or fistulas return my GI...
NCOT - Clo must have dragged up an old post of mine. TIES replaces the need for a conventional stoma so there's no need for a conventional bag always attached to you. I've been following the...
Hi All! The timing Clo is perfect. Something told me to peek here today! So nice to hear from you, although I'm so sorry for the suffering. Is it remi causing the kidney failure or something else?...
I had lasik 10 years ago without issue. Love it. I purchased the life long insurance so I can get a "touch up" now that my eye sight has changed. My advice is to absolutely follow the medicated drops...
To clarify - Stelara and all my biologics are covered by the pharmaceutical company. Your doctors visits are covered by OHIP -therefore you should see your GI. Prescriptions are self covered - until...
I'm in Ontario and all my biologics are covered, including Stelara by the pharmaceutical company. I haven't paid a cent. I'm unclear as to by you're waiting to see your GI until you become 65. OHIP...
Geez Lab. I'm so sorry for your loss. May her memory be a blessing. If you have any tea tree oil rub that over the spot. I take wild oregano oil x3/day and turmeric when I feel that weird sensation....
@73 -no debate necessary. Almost 1/2 mil vaccines unused under Ford's watch. If HC is Trudeau then he's done the right thing by amending vaccine protocol. Give praise when it's due. As far as the...
I'm really happy for you! Good you are starting physio. Healing Bottoms suppositories may help with the residual leakage. Expensive but worth it....
@73 - It was not Trudeau that increase the injections to 4 months. That was Health Canada. (Hope you didn't take CERB after that comment:) The reason being is that it was thought it better not to...
Yes, that's how I know I'm really sick. It's like I can't get enough air in. It's not a panic attack but even when I take deep breaths it's not enough. I also feel weak. Sometimes I find going for a...
Hey Clo! What a nice surprise hearing from you! I've been off living life in wonderful remission:) I have fistula issues on a rare occasion (like now) but I've been using WOO and Healing Bottoms...
@73Monte - 100% disagree with you on provincial response. If you're on ODSP you're starving to death, told to "get a job" and received no pandemic support. Both the feds and the province are in...
My first year on Stelara was plagued with yeast infections. My second year I had screaming knee pain. Rolling on the floor no relief pain that lasted for days. I could only lay down; sitting put the...
Hi Jane, I had horrible PG (skin disease) that wasn't responding to traditional treatment and I was very close to losing my leg. My very savvy and keen resident dermatologist found a small study (I...
I've been on IVIG for over 10 years. First to treat PG then found it worked for UC; now I have crohns. I believe had they not dramatically cut my dose I wouldn't have evolved to crohns. It's...
Does anyone know if it's safe to take antivirals for treatment of Shingles 10 days post Stelara injection? I'm concerned I may have shingles without rash and am waiting an appointment to get tested....
I've run through them all at Sinai and after a severely traumatic experience I switched and am blessed with 2 GI's. I'm that special:) I'd recommend Dr. Wolman at TGH. Good Luck!...
I will continue to be vigilant even as things open up. Things are less risky for ableds but I’m still in lockdown. I’ve attended one backyard bbq & followed recommended guidelines. I brought my own...
The best way to deal with it especially with a history is to go get some antibiotics ASAP & get a CT scan for fistulas. Do the usual sitz baths etc. Hope this goes away soon....
Sorry, I haven't but have used activated charcoal in the past and it really helped. Also slowed D down too, which was a bonus....
I'm so excited for you and am thrilled that your GI is very forward thinking. I expect that your aches and pains will decrease, if not go away completely. 3 days of treatment was very hard for me to...
Thank you straydog...nice to be remembered:) @ robwise. I’ve been on Ivig for more than 10 years. I was prescribed it for Pyoderma but it also helped my UC & thus was kept on it for years after my PG...