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FlowersGal

HealingWell Forum
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Member Profile
Display Name
FlowersGal
Profile Created
2/4/2017 6:01 PM
Last Seen
Yesterday 9:50 AM
Total Posts
1405

Last 50 Posts

other blood markers

When I was first ill and in a severe flare and trying to get diagnosed, I was having issues that kept interfering with diagnosis — one time I felt so weak and “off” I went to the ER and my blood...

Yesterday 9:49 AM

Ulcerative Colitis
Increasing Inflectra dose

I agree with poopyd! Isn’t there anecdotal stories that if you develop antibodies to humira then you might also to remicade/inflectra (or vice versa) because they’re somewhat related medications? Or...

8/7/2022 10:02 PM

Ulcerative Colitis
Update

Re: probiotics. I don’t really notice a difference when taking them so I suspect it’s a gradual thing. My thinking is they don’t hurt, so throw as many different strains as possible in there. I take...

8/7/2022 11:10 AM

Ulcerative Colitis
I'm probably either flaring mildly or have a GI infection...

I have diverticulosis which sometimes leads to diverticulitis and there is a risk of perforation during a scope with that. So maybe your colo-rectal surgeon, being not as familiar with UC, was...

8/6/2022 11:31 AM

Ulcerative Colitis
hospitalization rates

I believe it can happen. They had a term for it that I can’t remember now. Forgot to mention that I also went to ER one day right before the hospitalization because I felt really weird and weak and...

8/6/2022 11:23 AM

Ulcerative Colitis
Stelara Copay Assistance - Exhausted Janssen CarePath - What else is there?

I don’t know about stelara, but many of the drug companies have a “no-pay plan”. I get my Aimovig (migraine medication) epi-pens for free. I used to get my Apriso for free when I was taking it. I’m...

8/5/2022 6:26 PM

Ulcerative Colitis
hospitalization rates

I was hospitalized when first diagnosed. Mainly because it was going to take weeks to months to get a GI appt for my bloody diarrhea! Welcome to US specialty healthcare! Treated for pancreatitis for...

8/4/2022 2:15 PM

Ulcerative Colitis
Inflectra/infliximab question… minor blip?

Just wanted to add — I’m on entyvio and a 5 year remission. I still get blips where things are not bad but not normal. It never hurts to add in some rectals (if you haven’t already) as those are...

8/4/2022 1:54 PM

Ulcerative Colitis
COVID infection best practice for UC patients

FYI — also on entyvio for 5 years now! Glad it’s given you relief and hope it’s long-lived as mine! 😀 I’ve had both vaccines (moderna) a 3rd full dose booster , and a 4th “regular” booster (which...

8/4/2022 12:45 PM

Ulcerative Colitis
Yet another update

So sorry. I can imagine the confusion and fear you’re experiencing! I had a scare many years ago. Had a weird growth on my cheek. Dermatologist removed it then the biopsy came back positive for some...

8/4/2022 12:32 PM

Ulcerative Colitis
Distended belly on left side

Did you just start the vsl or is this something youve taken for awhile? If it’s new you might try stopping it to see if it helps....

7/31/2022 4:35 PM

Ulcerative Colitis
I'm probably either flaring mildly or have a GI infection...

FYI — this is an old wives tale so don’t know if it actually works but what the heck it can’t hurt — they say rodents don’t like the odor of Irish spring soap. So you can cut the bars in half or...

7/31/2022 4:33 PM

Ulcerative Colitis
Crohn’s triggers

I think you said you’re on pain pills? Just wanted to add they give me horrible constipation. Which could be why your bowels aren’t moving. I had bad lower back pain when I was at my sickest but it...

7/30/2022 2:05 PM

Ulcerative Colitis
Sudden hives every time I go outside?

Was there any sun at all when you went out at night? Some medications will give you an allergic reaction to sunlight. Had it once and it was horrible. Do they hives go away when you’re back inside?...

7/30/2022 1:58 PM

Ulcerative Colitis
Balsalazide price increase anyone?

I don’t know which drug you’re talking about but you can check to see if they carry it here: https://costplusdrugs.com/medications/categories/gastrointestinal/ I think so far they’re only carrying...

7/30/2022 1:55 PM

Ulcerative Colitis
Update

Good thinking on going to ER. Unfortunately this disease can be so severe but getting a GI specialist can be a long process as there are too few of them and too much disease out there. Let us know...

7/28/2022 10:16 AM

Ulcerative Colitis
Infliximab maybe not working?

Just be aware it takes a long time for colon inflammation to heal. You’ve only had 2 doses so far so are probably too early to see remission. Count your progress in weekly steps. You should see...

7/28/2022 10:13 AM

Ulcerative Colitis
Increasing Inflectra dose

I remember (thankfully only vaguely now — knocking on wood!) that feeling of wanting so badly to be better and to have my life back. Patience is hard!!!...

7/24/2022 10:46 AM

Ulcerative Colitis
Flaring

I know nothing about the pens either. But I do know that entyvio dosage is 300 mg every 8 weeks. So if you’re only getting 108 mg every 8 weeks then you are definitely undertreated. Contact your dr...

7/24/2022 10:45 AM

Ulcerative Colitis
Persistent constipation with ulcerative colitis

I’ve always had constipation my whole life. Prunes have never worked for me which is a shame because I do love them. Apple juice or an apple works sometimes. The best thing for me is daily Metamucil....

7/21/2022 3:35 PM

Ulcerative Colitis
Rooster story for laughs...

OMG! You should have been a comedy writer clo! I hate spiders too and tarantulas give me the physical willies so I can only sympathize and know I would have done the same, imagining them crawling up...

7/21/2022 3:24 PM

Ulcerative Colitis
Remicade, UTIs, surgery

I sympathize about UTIs — I know them and the pain too well. I go from zero to peeing blood in about 2 hrs. Crazy pain! So sorry. Mine were occurring about every 9 months. I started taking the cream...

7/18/2022 3:29 PM

Ulcerative Colitis
Increasing Inflectra dose

Could possibly just your body reacting to no prednisone and things will even out after your infusion. Fingers crossed!...

7/15/2022 6:01 PM

Ulcerative Colitis
Increasing Inflectra dose

Great news Rusty! Keep us updated how you do on increased dose. Don’t worry about the budenoside until you see improvements/feel stable. Getting off the prednisone is the most important thing....

7/13/2022 1:04 PM

Ulcerative Colitis
anxiety and urgency

CBT is helpful for anxiety if you don’t want to try the med route. Basically you learn to “hear” and combat the negative voices in your head. There are books and maybe websites or apps. What I recall...

7/13/2022 11:59 AM

Ulcerative Colitis
checking in (OT)

Thanks for the update! Hang in there! Keeping you in my thoughts and prayers!...

7/8/2022 2:50 PM

Ulcerative Colitis
Update: Still in remission 1 year after starting Xeljanz!

Late to the party but congrats on 1 year remission Sara! So happy that after all your struggles you found a med that works for you!...

7/8/2022 2:24 PM

Ulcerative Colitis
Interrupted Sleep

Fingers crossed! So glad you are feeling so much better! But not so sure about dropping the budenoside while tapering off prednisone. Watch that closely....

7/8/2022 2:19 PM

Ulcerative Colitis
MAB In fusion while on Entyvio

Maybe MAB is monoclonal antibodies? I know of someone who got those several months ago and also dramatically improved their covid symptoms but don’t know if they have any form of IBD though. I know...

7/8/2022 2:16 PM

Ulcerative Colitis
More about Remicade and endoscopic remission

After I was in symptomatic remission, a colonoscopy showed microscopic inflammation. I think that was about 6-8 months after I began entyvio infusions. The next scope (another 6-10 months later?)...

7/1/2022 7:20 PM

Ulcerative Colitis
Constiption

I use stool softeners (generic) and/or miralax. Even my GI recommends miralax...

6/29/2022 8:36 AM

Ulcerative Colitis
Question about medication choices

Very happily in a 5 year remission (so far) on entyvio. Infusions are easy — only 30 minutes every 8 weeks and absolutely no side effects. I recall being in symptomatic remission by month 4 but with...

6/25/2022 11:59 AM

Ulcerative Colitis
Hyperbaric Oxygen Therapy

Seems like I recall some older posts here about it. You might do a search...

6/21/2022 9:25 PM

Ulcerative Colitis
Brought my stool sample to the lab

Lol! Agree with garyi!...

6/18/2022 8:26 AM

Ulcerative Colitis
colonoscopy today

Fingers crossed the flare is mild and quickly resolved it’s good your doc is being proactive! Knock it back before it gets worse! Let us know what his advice is...

6/18/2022 8:24 AM

Ulcerative Colitis
wanna laugh?

Lol!!!...

6/17/2022 7:16 AM

Ulcerative Colitis
"Weekends are quieter in the forum"

This forum was the light in a dark forest for me when I became ill. All I got from my dr at first was “take mesalamine, eat what you want, you’ll be fine .“ when it became clear that wasn’t going to...

6/17/2022 7:15 AM

Ulcerative Colitis
For Fun: What is your infusion day routine?

Entyvio infusions are quick — a 30 minute drip. Usually another 20-30 minutes to check in and get set up. I take my phone and tablet - either play games or read. My guilty pleasure is Starbucks so I...

6/6/2022 6:28 AM

Ulcerative Colitis
Entyvio/ remission

I was in complete symptomatic remission by around month 4. But a colonoscopy around that time still showed some microscopic inflammation and disease. The next colonoscopy (not sure how much longer...

6/6/2022 5:53 AM

Ulcerative Colitis
Interrupted Sleep

I agree with the others. I think a new dr will probably want to do a scope. Plus I’m not sure insurance will “believe” him on the needed med increase without one Personally I do not trust insurance...

6/1/2022 1:02 PM

Ulcerative Colitis
Biologics

I’m glad you’re doing better!!! As far as benzodiazepine and addiction— yes they are addicting but I feel that as long as you are aware of that AND afraid of it , it most likely won’t happen. I have...

5/31/2022 8:11 AM

Ulcerative Colitis
Does being around people-since Covid-bother you?

I have a friend who got covid. She is on methotrexate for arthritis. Her covid symptoms were fairly mild (she is vaxxed and boosted) enough that she thought it was allergies at first. She got...

5/31/2022 7:59 AM

Ulcerative Colitis
A question from a Crohnie. Help needed

Have you tried suppositories instead? I remember trying to use a fleet enema (not mesalamine) for a sigmoidoscopy when I was flaring and it made me scream in pain. Mesalamine Suppositories are coated...

5/30/2022 8:33 AM

Ulcerative Colitis
Interrupted Sleep

Personally I would stay where you’re at now. You won’t achieve “normal” or remission on prednisone. Not when your disease is prednisone dependent anyway. Some people can achieve remission on...

5/29/2022 11:15 AM

Ulcerative Colitis
Phillips’ colon health. Daily probiotic.

I take probiotics but switch brands a lot. I usually take one with the most strains I can find....

5/26/2022 7:00 PM

Ulcerative Colitis
Vital Proteins Collagen Peptides

I put this in my smoothies when I was ill. I recently rediscovered it the other day and have been using it again. I’ve been putting it in my coffee or hot tea. Takes a lot of stirring to get it to...

5/26/2022 10:10 AM

Ulcerative Colitis
Biologics

Turning point for me and my anxiety was getting meds. I couldn’t analyze or power through those attacks no matter how much I tried. My mind was fixated on those worry thought and I couldn’t get them...

5/26/2022 10:05 AM

Ulcerative Colitis
Interrupted Sleep

Just my 2 cents — I’ve been in this type of situation before where the dr/prescriber telling me one thing and insurance telling me completely different. I always suspected it was insurance making it...

5/25/2022 2:01 PM

Ulcerative Colitis
Ulcerative Colitis Symptoms Tracking Apps

There are! I think I deleted mine tho so can’t remember their names. One was a poop diary only. It’s called stool log. It was pretty rudimentary but my GI at the time asked me to use it. The other...

5/25/2022 8:09 AM

Ulcerative Colitis
Does Anyone With UC Intermittent Fast?

I do. Less in less out! Plus I also have diverticulitis attacks and that’s the first thing they do is put you on a liquid diet, the thought being that no food passing through will give it a better...

5/25/2022 8:04 AM

Ulcerative Colitis
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