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U B Tough

HealingWell Forum
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Member Profile
Display Name
U B Tough
Profile Created
8/11/2015 11:17 AM
Last Seen
2/16/2021 5:20 PM
Total Posts
1116

Last 50 Posts

Got the Moderna vaccine today

@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...

2/16/2021 5:05 PM

Crohn's Disease
Joint pain and Stelara

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...

2/16/2021 4:59 PM

Crohn's Disease
Is IVIG available for UC?

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...

1/8/2021 10:33 PM

Ulcerative Colitis
Is IVIG available for UC?

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...

1/5/2021 6:09 AM

Ulcerative Colitis
Shingles treatment and Stelara

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....

8/26/2020 5:24 AM

Ulcerative Colitis
GI's in Toronto Canada preferrably Mount Sinai

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!...

7/22/2020 11:08 AM

Ulcerative Colitis
Distancing while on immune suppressor ?

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...

7/5/2020 6:04 PM

Ulcerative Colitis
Is this perianal abscess and what should I do?

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....

5/15/2020 12:53 AM

Crohn's Disease
Digestive enzyme for gas

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....

5/11/2020 8:49 PM

Ulcerative Colitis
IV Immunoglobulin (IV Ig)

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...

4/24/2020 7:23 PM

Crohn's Disease
IV Immunoglobulin (IV Ig)

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...

4/23/2020 12:54 PM

Crohn's Disease
Moving on from Entyvio

Stelara has done wonders for my fistulating crohns. If I recall it doesn’t work as well for UC. I’d 100% try xeljanz first since it’s a pill & uncomplicated In complicated times. You may not have to...

4/17/2020 7:58 AM

Ulcerative Colitis
Safe to volunteer?

100mg imuran Stelara Ivig I’m still doing very well & am actually loving the isolation time. Very anxious as we all are but am just heartbroken but the societal effects of corona & would like to give...

4/9/2020 8:45 AM

Ulcerative Colitis
Wow. Tough bunch of days. I’m home

Insanely relieved you are home & on the mend. I’m sure these were scary weeks for your daughter & entire family. So glad she’s got her dad back! Wishing you continued strength....

4/5/2020 5:28 AM

Ulcerative Colitis
Have both Corona and Pnuemonia

Oh my goodness. Breath in: I heal myself Breath out: I heal others. Thinking of you.......

3/27/2020 6:31 AM

Ulcerative Colitis
3/11: Implications of COVID-19 for patients with pre-existing digestive diseases

Haha! Love it Uniform! I hope you’re right. Thanks Ipoop for this info. I emailed my Stelara coordinator this am asking for exactly this type of info. I’m not sure if I should further reduce my...

3/13/2020 2:02 PM

Ulcerative Colitis
meds/weight gain- can't lose weight on keto

Thank you for the help and Adriana, I hope I'm in remission forever too. 30 years of IBD is utterly ridiculous...... I can't stop the antidepressant but I honestly feel that Stelara caused the...

3/8/2020 3:40 AM

Ulcerative Colitis
meds/weight gain- can't lose weight on keto

Hi All, Lovin' remission so I haven't been around:) I've gained 40lbs over the last 2.5 years on Stelara. I was a sickly skeleton prior to this. As Stelara kicked in I was able to eat things I...

3/6/2020 3:03 PM

Ulcerative Colitis
I'm starting Stelara (again)

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...

2/13/2020 10:27 AM

Crohn's Disease
Stelera, Humira or Entyvio

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,...

2/9/2020 9:45 PM

Crohn's Disease
I'm starting Stelara (again)

Way to go! This is a long time coming. Fingers crossed....

1/24/2020 12:23 PM

Crohn's Disease
Constant virus- reduce imuran?

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...

1/9/2020 9:26 AM

Ulcerative Colitis
Constant virus- reduce imuran?

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...

1/9/2020 8:00 AM

Ulcerative Colitis
Stelara side effects

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...

1/7/2020 8:54 PM

Crohn's Disease
Anyone on Stelara?

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...

1/4/2020 5:31 PM

Crohn's Disease
Crohn's and cancer treatments

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...

12/9/2019 7:27 AM

Crohn's Disease
Advancement flap for anal fistula - My experience

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...

11/22/2019 12:18 PM

Crohn's Disease
inflammatory markers

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...

10/29/2019 4:44 AM

Crohn's Disease
U B Tough....

Thank you! Will do. Sorry for the delay. Yesterday was hospital day....today is zombie day:)...

10/23/2019 8:29 AM

Ulcerative Colitis
how much anesthesia and contract is too much??

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...

10/20/2019 10:14 PM

Ulcerative Colitis
Pain is back

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....

10/20/2019 1:25 PM

Crohn's Disease
how much anesthesia and contract is too much??

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...

10/20/2019 12:04 PM

Ulcerative Colitis
how much anesthesia and contract is too much??

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...

10/20/2019 9:36 AM

Ulcerative Colitis
inflammatory markers

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...

10/20/2019 9:31 AM

Crohn's Disease
inflammatory markers

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...

10/18/2019 10:13 AM

Crohn's Disease
Flare up- I think?

Definitely need biologics/enemas in combination with aza. Remicade is generally the first choice for biologic....

10/17/2019 5:56 PM

Crohn's Disease
Flare up- I think?

Sounds like you need much more than aZa. It often works in combination. What else have you tried?...

10/17/2019 2:12 PM

Crohn's Disease
Update: New Study: Crohn’s how I became cured

Thanks, from a fellow Canadian🇨🇦...

10/16/2019 5:24 PM

Crohn's Disease
Update: New Study: Crohn’s how I became cured

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...

10/16/2019 9:45 AM

Crohn's Disease
Flare up- I think?

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....

10/16/2019 9:38 AM

Crohn's Disease
Missed my second dose of Stelara twice now

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...

10/3/2019 1:20 PM

Crohn's Disease
Missed my second dose of Stelara twice now

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...

9/24/2019 5:12 AM

Crohn's Disease
Missed my second dose of Stelara twice now

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...

9/18/2019 5:47 AM

Crohn's Disease
Susie- Port update

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...

9/16/2019 5:29 PM

Ulcerative Colitis
Susie- Port update

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...

9/16/2019 4:42 AM

Ulcerative Colitis
Another new drug— Ozanimod

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...

8/26/2019 2:00 PM

Crohn's Disease
Xeljanz 14 weeks BUT don’t be too hard on me......I started smoking again!!

Some have success with the nicotine patch....

8/26/2019 1:37 PM

Ulcerative Colitis
New Drug - Mirikizumab

@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?...

8/25/2019 2:50 PM

Crohn's Disease
6 months update on Filgotinib

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...

8/23/2019 1:11 AM

Crohn's Disease
Nortriptyline

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...

8/20/2019 7:23 AM

Depression
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