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tiredofallthispoop

HealingWell Forum
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Member Profile
Display Name
tiredofallthispoop
Profile Created
1/10/2017 5:02 PM
Last Seen
2/20/2021 12:48 PM
Total Posts
212

Last 50 Posts

Stelara reaction

I was also premedicated, with tylenol and two benadryls which really did me in. I barely made it home!! I started in June 2020, along with starting a course of budesonide at both ends. In November I...

2/20/2021 12:47 PM

Ulcerative Colitis
What foods do you eat to avoid constipation?

I like Psyllium Husks but instead of the 4 per meal I start with 1 or 2 per day. That may be all that is needed....

2/20/2021 12:43 PM

Ulcerative Colitis
About to Give In to Biologics

Fish oil makes me bleed. Maybe eliminate that....

2/13/2021 10:48 AM

Ulcerative Colitis
Persistant " mild" Ulcerative Proctitis: Advice needed

I really liked Uceris foam...

2/11/2021 8:18 AM

Ulcerative Colitis
How much blood is too much blood? My weirdest flare ever

I always thought bright red was from hemmis?...

12/2/2020 9:41 AM

Ulcerative Colitis
OTC cold meds

I am off to the store for Robitussin and Mucinex :-) Thanks...

11/30/2020 8:09 AM

Ulcerative Colitis
OTC cold meds

thank you, I will try this...

11/29/2020 2:37 PM

Ulcerative Colitis
OTC cold meds

Hey everyone, I have been suffering from especially bad nasal congestion from Stelara. My sinuses are blocked and I have almost constant post nasal drip. It's very thick. My GP prescribed a nasal...

11/29/2020 11:38 AM

Ulcerative Colitis
Stelara experiences

It's definitely helping me but I think I also suffer from some side effects from it like headaches and diarrhea. Hard to tell!! I have been on it since June and am going to every 4 weeks to see if I...

11/2/2020 11:34 AM

Ulcerative Colitis
Hydrocortisone Enemas Making Things Worse

I use vaseline as a protective barrier, seems to help for me....

10/26/2020 8:26 AM

Ulcerative Colitis
Insomnia Due To Prednisone

I found some relief using an edible with a ratio of 20mg CBD to 2 mg THC. I started using only half of this dose or less. I find I sleep better and if I awake I can fall asleep easier....

10/21/2020 11:47 AM

Ulcerative Colitis
Have you gotten the Shingles Vaccine?

I have had both of them, had the second just recently. I do have a reaction, mostly just extreme fatigue for a day or so....

10/19/2020 6:57 AM

Ulcerative Colitis
How did you decide when to have surgery?

I am following in your footsteps. I know that people say they wonder why they waited but on the other hand I keep seeing a lot of people with a lot of issues after surgery so... I plan on staying on...

9/12/2020 7:50 AM

Ulcerative Colitis
Do you have tinnitus?

I'm just curious how many of us also suffer from tinnitus. I always thought it was from too much loud music (and that probably didn't help) but was surprised to find out it is linked to IBD/UC....

9/3/2020 1:38 PM

Ulcerative Colitis
Continue Remicade or move on?

If you are not doing too badly, I would remain on the Remicade as long as possible. I have already gone through them all and am at Stelara. Next stop is surgery. You don't know that any others will...

8/24/2020 1:08 PM

Ulcerative Colitis
What's working? What's superfluous?

I like to use Psyllium Husk capsules for constipation....

8/19/2020 12:33 PM

Ulcerative Colitis
Cortifoam shortage?

Thanks for posting about the Uceris foam Butthurt! My Dr prescribed Cortifoam but it is unavailable. Am trying to get prescription changed to Uceris foam now....

8/19/2020 8:16 AM

Ulcerative Colitis
Getting out of a flare

Try following a low FODMAP diet. My nutritionist is recommending I do this. I was until I decided I could probably handle watermelon again. I regret that decision... ;-)...

7/8/2020 8:56 AM

Ulcerative Colitis
Is Entyvio working? What do the lab results mean?

You can get your Entyvio levels checked. They may need to increase the frequency of your infusions....

7/4/2020 6:05 AM

Ulcerative Colitis
I'm not doing good

You never know. I think Stelara is working for me, after 4 years of nothing working except pred. I really hope you can find some relief. I know how it can feel so hopeless at times....

6/24/2020 7:40 AM

Ulcerative Colitis
B12 Dificiency

Make sure you are getting enough protein. I was not and between that and a host of medication side effects became quite malnourished. I had painful muscle spasms all over. It has taken 5 months but...

6/4/2020 6:33 AM

Ulcerative Colitis
Starting Entyvio

Lialda is a mesalamine so if she did not respond to Lialda it is unlikely she will respond to others. Entyvio is fairly slow acting. Prednisone does not come at no cost but it might be something to...

6/4/2020 6:28 AM

Ulcerative Colitis
struggling with entyvio/vedolizumab side effects

I had horribly debilitating muscle and joint pain from Entyvio, as well as sleep issues. I found that taking a CBC/THC gummy at bedtime was an immense help. Try whatever you can get for a sleep aid....

5/1/2020 1:43 PM

Ulcerative Colitis
started xeljanz

Maybe trying a diet with less fiber might help with your frequency....

4/27/2020 10:36 AM

Ulcerative Colitis
Constipation

I really like psyllium husk in gel cap form. I take one or two in the morning if I feel I need it....

4/27/2020 10:35 AM

Ulcerative Colitis
Other ways or bringing up Iron

I really like something called MegaFood Blood Builder. Most iron supplements have bad effects on my gut, but the only downside of this one is the initial taste (kind of metallic.) I was anemic, took...

4/23/2020 12:47 PM

Ulcerative Colitis
Moving on from Entyvio

I will probably be starting Stelara soon as well. My doctor told me you will know very quickly with Stelara whether it is working or not, ie. within a month at the most. I would be surprised if your...

4/16/2020 7:49 AM

Ulcerative Colitis
Flying or not covid-19

I almost bought some from King Arthur flours directly about a week ago but balked at the shipping charges. They are all sold out now too....

3/22/2020 3:17 PM

Ulcerative Colitis
Flying or not covid-19

Love the description of Whole Foods. It changed a lot when Amazon bought it out, and not for the better imho. Lots of hard to find things disappeared altogether....

3/22/2020 3:10 PM

Ulcerative Colitis
Flying or not covid-19

CC in PA - sorry about your Mom. It's never easy, even when it's expected, and I'm sure the added stress is not helping you. I am a Canadian who is resident in the US. Just talked to a friend in...

3/22/2020 10:36 AM

Ulcerative Colitis
Flying or not covid-19

My brother lives in South Korea and says their health care system is far superior to ours here. I think it would be incredibly selfish to travel for pleasure only when so much of the world is...

3/21/2020 9:52 AM

Ulcerative Colitis
Remission without meds possible?

Entyvio did nothing for me, in fact I went from left sided to pan colitis, and suffered horribly from joint and muscle pains. It totally affected quality of life. Every time I suggested maybe the...

3/20/2020 12:11 PM

Ulcerative Colitis
question about entyvio side effects

Entyvio kept my psoriasis in check, but gave me horribly debilitating joint and muscle pain. I would rather spend half my life on the toilet than go through that again....

3/4/2020 1:07 PM

Ulcerative Colitis
UC and Tinnitus

I've had tinnitus for several years now. I always thought it was from too many concerts... Thanks UC! :-/...

3/2/2020 9:56 AM

Ulcerative Colitis
Hair Loss Steroid - UC . flare

Make sure you are getting enough protein. We need extra in a flare because our colon is constantly trying to rebuild itself. Too little protein can cause fatty liver disease. You should aim for...

2/24/2020 9:51 AM

Ulcerative Colitis
Keflex causing diarrhea / UTI on Humira

How much Vitamin D are you taking Sara? Mine was also really low so I started taking the maximum daily dose of 5000 IU. I take it pretty much every day and my levels are never high, usually middle of...

2/21/2020 9:38 AM

Ulcerative Colitis
Prednisone

The drug company paid portion used to count towards our deductible (one infusion and it was met!) and it seems all the biologics have payment assistance. Usually it's $5 per infusion but I found...

2/20/2020 11:50 AM

Ulcerative Colitis
Biologics linked to 34,000 deaths

The lobotomy treatment is still kind of freaking me out. Medicine has come a long way.... or has it?!...

2/20/2020 9:26 AM

Ulcerative Colitis
Biologics linked to 34,000 deaths

There is a company in Canada called Qu Biologics that is trying to "fix" the microbiome instead of just suppressing the immune system. I think they are on second round of trials. I am hoping they...

2/20/2020 9:23 AM

Ulcerative Colitis
Freaking out

give yourself a few days or more to get back to a regular diet etc. It does suck not being able to just do what we want but chances are it will go back to normal once you are back in a routine....

2/20/2020 9:20 AM

Ulcerative Colitis
Keflex causing diarrhea / UTI on Humira

I do the same thing - trying to piece together all the different symptoms to figure out what is going on. I don't think it's hypochondria, more like I am the one with the the most knowledge of what...

2/20/2020 9:17 AM

Ulcerative Colitis
I keep feeling like I'm going to pass out

I am lucky enough to live within driving distance of Johns Hopkins and have slowly switched all my doctors there. Some are still better than others but overall I think its a better solution. I like...

2/20/2020 9:03 AM

Ulcerative Colitis
I keep feeling like I'm going to pass out

I'm finding it increasingly difficult to trust doctors. Not only are they not infallible, a lot of them are either lazy or useless or worse. I obtained copies of the files from my last GI when I...

2/20/2020 8:15 AM

Ulcerative Colitis
I keep feeling like I'm going to pass out

I can't believe they didn't treat the UTI?! UTI's can have all sorts of symptoms, definitely something you don't want to leave untreated. (sorry, reading just first page.) Hope this is solved...

2/20/2020 7:51 AM

Ulcerative Colitis
Biologics linked to 34,000 deaths

I'm glad you posted it, I've been thinking about biologics this morning and wondering what treatment was like even 50 years ago, they didn't have all these drugs, did they just do nothing? I am...

2/19/2020 9:59 AM

Ulcerative Colitis
Lymphoma Testing

Ausruby, how did it go with your GP? I hope you have no signs of lymphoma and the tests weren't too bad. They should be able to do some blood tests and rule things out pretty quick....

2/14/2020 11:25 AM

Ulcerative Colitis
Insurance is stupid (a rant)

Keith - I'm switching because Entyvio just wasn't doing much, except making me hurt all over. The infusion center was at my Dr.'s office, who is definitely in network. I wouldn't just kick it to the...

2/13/2020 12:58 PM

Ulcerative Colitis
Insurance is stupid (a rant)

We switched to Aetna from United Health Care as of Jan 1st, because my husband's employer decided to change. Up until last Friday I was supposed to be on monthly Entyvio infusions. (nb. Entyvio is...

2/13/2020 12:04 PM

Ulcerative Colitis
Enlarged spleen...

Yes thanks Sara, I was on pred for about 2 yrs. The devil's tic tacs. No pain but I gained 50lbs which I've only managed to lose about half of. I think doctors need to not prescribe it unless it is...

1/30/2020 9:04 AM

Ulcerative Colitis
Enlarged spleen...

Thanks Straydog. I saw a rheumatologist about 3 wks ago (had waited 9 months to finally get in!!) and just had an MRI of my hips where the pain is the worse. He suspected sacroiliitis, but there was...

1/30/2020 9:02 AM

Ulcerative Colitis
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