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clo2014

HealingWell Forum
>
Member Profile
Display Name
clo2014
Profile Created
2/1/2015 4:16 PM
Last Seen
5/31/2023 2:08 PM
Total Posts
1911

Last 50 Posts

How is everyone doing? I feel cured at this point with Rinvoq

Wonderful! 🎉 Congratulations 🎉 I hope it works for years and years.. and years. Clo...

5/31/2023 2:08 PM

Ulcerative Colitis
FRUSTRATED !!!

WayneTX, You really need to see if they tested for antibodies. My GI said that with a similar medication antibodies can develop with the first infusion and it will not work at all without doing...

5/31/2023 2:04 PM

Ulcerative Colitis
Anyone take methotrexate with remicade

Faith, Side effects from MX.... There are people in some of my IBD support groups that have had their side effects get better after they've been on it for 4 to 6 months. I used to have issues for 4...

5/27/2023 3:48 PM

Ulcerative Colitis
FRUSTRATED !!!

Wayne, All the posts above are really spot on. And I too think your taper is way too fast. Just a thought.... Has your GI discussed dual therapies? I take methotrexate with my Remicade so I don't...

5/27/2023 8:18 AM

Ulcerative Colitis
Anyone take methotrexate with remicade

Faith, I did that whole post and forgot to add... I did develop antibodies after my surgeries. I would start MX about 2 or 3 weeks before my first post operative Remicade infusion and it would start...

5/27/2023 7:58 AM

Ulcerative Colitis
Is UC an energy deficiency disease

OldMike, I have a colostomy. I have rectal stump/Hartman's pouch issues. Recently had issues with hormones and LDL levels. My PCP recommended I use CQ10, Red Yeast Rice, Zinc, 4 tablespoons of ground...

5/26/2023 7:04 PM

Ulcerative Colitis
Anyone take methotrexate with remicade

Faith, I take MX with my Remicade. I also had taken steroids to get my disease under control. I developed severe joint pain before and then after my Remicade infusions. I had all the tests and R/A...

5/26/2023 6:53 PM

Ulcerative Colitis
FRUSTRATED !!!

Hi Wayne. I'm sorry that you are struggling. For some people it takes awhile for the biologic to build up and work-- for others it happens much quicker. There are some people that do not respond well...

5/26/2023 6:27 PM

Ulcerative Colitis
undigested blueberries

And Blueberries with their protective skin covering are harder for some people to digest when they've been thru a flare. I have an ostomy with slower digestive times and if I don't break the skin of...

5/23/2023 1:38 AM

Ulcerative Colitis
Stelara. Shorter than 8 week intervals?

Rusty, I hope things have continued to improve. I too made an excel chart..... Frequency, any issues, how many times..etc.... I also included a secondary sheet with everything I ate or put in my body...

5/23/2023 1:32 AM

Ulcerative Colitis
Stelara. Shorter than 8 week intervals?

Rusty, Did he tell you "why" he wanted to add the Imuran? Was it mostly to help with the symptoms and get you in remission, was it to stop you from building antibodies or both?. The why could help in...

5/18/2023 9:39 AM

Ulcerative Colitis
Where is everyone?

Silly question..... How do you know that they people on other sites are people that used to be on here........

5/15/2023 11:04 AM

Ulcerative Colitis
Where is everyone?

I like it right here.....There are times when I do miss all the postings... Like from before ... But without the clashing. The group here has forgotten more information than I'll ever retain. I don't...

5/14/2023 8:06 PM

Ulcerative Colitis
Where is everyone?

I'm just so very glad that she is ok and is going about living her life. I was concerned because she had posted after surgery and then was starting to recover and then.... Nothing. I think we all...

5/14/2023 7:58 PM

Ulcerative Colitis
Hinghamite

Have you considered one of those diabetic monitors that alerts the person by phone in their blood sugar levels? I'd think that might be a little easier for her. On the changing a bag while in a...

5/11/2023 7:50 PM

Ostomies
Crease causing leakage

Are your Hollister's older? Are you checking the manufacture date on them when you get them? Sometimes my skin gets so use to a product that the product does not work as well... So I have to rotate...

5/11/2023 7:14 PM

Ostomies
Been a long time since I was on here!

Glad that things are going better. Crossing my fingers and saying lots of prayers that it continues. You might want to delay any new hair decisions until after your taper. I always make the worse...

5/10/2023 8:53 PM

Ulcerative Colitis
Where is everyone?

Conquer UC, I take my flaxseed in a smoothie, or I add water to it and a little (very little) oatmeal and eat it for breakfast, or I make almond milk shakes with flaxseed, ice, alittle vanilla and...

5/10/2023 8:35 PM

Ulcerative Colitis
Annoyed with my IBD team

How are you? Has the new med been approved yet? I've had to go up to 80 mg of Prednisone a few times.... it took a couple of weeks at 80 to start to notice a significant difference. In the...

5/9/2023 5:42 AM

Ulcerative Colitis
Vit B12 too high on blood test

SN, I've had my tests come back wonky also. Dr. Google scares the living crap outta you.... Are you flushing your system out with water? My PCP had me start 4 tablespoons of organic ground flaxseed...

5/8/2023 8:02 PM

Ulcerative Colitis
Eurgh…antibiotics

Yogurt... I eat lots of yogurt to offset the antibiotics. Clo...

5/8/2023 7:57 PM

Ulcerative Colitis
Still on Remicade

I'd absolutely talk to my doctor. Premeds help me. Clo...

5/8/2023 7:55 PM

Ulcerative Colitis
FDA Approves First Oral C.Diff Pill Made from Human Poo

I don't know...... Swallowing this story is sorta hard for me... Shudder.... Lol.... J/K.. Glad they have an easier way to do it....

5/8/2023 7:54 PM

Ulcerative Colitis
Where is everyone?

CcinPA, After that nightmare scope with the evil nurse.... I developed a huge golf ball size knot on the inside of my elbow right below where she was doing the IV. My PCP stated it's a trauma site...

5/8/2023 7:50 PM

Ulcerative Colitis
Where is everyone?

I've been lazy about posting. I get on and get back off without rhyme or reason. My GI finally responded about my scope and said with "everything considered" he's happy with my results... I have an...

5/7/2023 1:40 PM

Ulcerative Colitis
I have a date for surgery

Anyone heard from NCOT? I sent an email awhile back and didn't get a response. NCOT, I hope you are healthy and happy, that your surgery was a success and that you are out enjoying life. I think of...

5/7/2023 1:06 PM

Ulcerative Colitis
Been a long time since I was on here!

BG, How are you doing? Hope you are feeling better. SN, I know.... It's just silly. My Mom noticed things like that more than I did. It used to really bother her when we were in a different places...

4/29/2023 11:29 AM

Ulcerative Colitis
Vit B12 too high on blood test

Please let us know. I'm crossing my fingers for you! Clo...

4/28/2023 11:08 AM

Ulcerative Colitis
Been a long time since I was on here!

I have to admit.... I do say that to people when I am very upset.... Well bless your little heart.... How can I explain this to you.... And they sometimes know I am being mean. The other one is...,...

4/28/2023 11:07 AM

Ulcerative Colitis
When does Stelara start working?

Minnie, I just dropped in to say that I'm sorry you are struggling so. I hope this med kicks in faster for you. For what it's worth, my GI said that if I develop antibodies and Remicade stops working...

4/27/2023 7:57 PM

Crohn's Disease
Vit B12 too high on blood test

SN, I've never had really high B levels so I am unable to help you there. I would recommend that you get another set of tests done asap to ensure they didn't screw up the first one. They did that...

4/27/2023 7:51 PM

Ulcerative Colitis
Whenever I think I've turned a corner -- Nope!

SN, OMG.... I laughed out loud over the last few posts....!!! I thought I was the only one to think and do those things. Those automatically flushing toilets really mess with me. I always look!...

4/27/2023 7:46 PM

Ulcerative Colitis
One long, mostly boring post

The GI has been in 5 different states?. I'd be using your doctors GI too. I've never heard of a GI wanting to wait on a scope. Usually they confirm the disease with blood work and a scope then make...

4/27/2023 7:35 PM

Ulcerative Colitis
Been a long time since I was on here!

People are idiots. I'm very "fluffy"... Very fluffy... And I get that... Oh so and so has UC/Crohn's and they are so thin...... And then they tap their foot and look at me. I tell them to try taking...

4/27/2023 7:19 PM

Ulcerative Colitis
Will bleeding stop?

That's too long to wait. Call your doctor and get the help you need now. I'm unsure of the amount of blood you are losing... And I'm sure there are people on here that have waited. I am on the other...

4/22/2023 9:12 PM

Ulcerative Colitis
Been a long time since I was on here!

BG, IV steroids were usually at 120 or so. They'd start to taper me down a little the 3 days before leaving and then I'd usually go from 100 to 80 mg the first week. (If I was lucky) I'd be at 80 for...

4/22/2023 9:06 PM

Ulcerative Colitis
My Daughter, (recap/update)

73monte, I hope you all are able to get that moved up. Is she having any symptoms of a flare? Clo...

4/21/2023 9:47 AM

Crohn's Disease
NCOT

This is the first time I've emailed her so I too am unsure on her response time. Hopefully she'll respond soon. I know she sometimes go offline for long periods of time..... I just wanted to make...

4/21/2023 9:45 AM

Ulcerative Colitis
Been a long time since I was on here!

BG, Good news on the room. I am astounded on the hospital. (I think the staff should be able to blow dart and tranquilize the noise makers....) Hospitals should never have 2 to a room. I get...

4/21/2023 6:49 AM

Ulcerative Colitis
FDA Approves Bivalent Booster

Keith, Thanks for keeping us updated. I too saw that the nasal spray was supposed to be out in the near future. Clo...

4/19/2023 6:55 PM

Ulcerative Colitis
Been a long time since I was on here!

BG, YIKES!!!!! Holy Toledo Batman!!!! Hang in there! Sometimes it's good to check out what other doctors have to say and why they think the way they do. Hopefully these doctors can get you back in...

4/19/2023 6:52 PM

Ulcerative Colitis
Been a long time since I was on here!

Hey, just checking on you. I hope you are feeling better. Clo...

4/17/2023 9:24 AM

Ulcerative Colitis
NCOT

Well, I haven't seen NCOT around..... I hope she's out enjoying her life after her surgery. If you all hear from her please let me know she's ok. Oh... And I did send her an email... I'm just unsure...

4/16/2023 1:05 PM

Ulcerative Colitis
Will the stoma noises decrease after a while? How long?

I have an end colostomy so there may be some difference. I'm sorry you are going thru this. Those noises can be embarrassing and occasionally they still happen to me. (It's been 7 years) but not as...

4/14/2023 7:54 PM

Ostomies
Itchy stoma

Welcome to the forum. Usually when I feel itchy or tingly on or around my stoma (at first it was difficult to differentiate.) It's been some of the following... 1.) The red part of the intestine was...

4/14/2023 7:27 PM

Ostomies
Annoyed with my IBD team

I'm in the U.S. so what I suggest may not be available for you How long have you now been off infliximab? Sometimes if it hasn't been too long they can restart it. I've had 3 surgeries and multiple...

4/14/2023 7:01 PM

Ulcerative Colitis
Can you have insurance approvals for more than one infusion center?

The not using the pump..... Never had that happen before. They use the same speed all the way thru for me too. When they speed it up at the end... It gives me a headache during and then makes me puke...

4/14/2023 6:32 PM

Ulcerative Colitis
Been a long time since I was on here!

Oh no!!!! Are you still in the hospital? Have your test results come thru yet? When my GI does all the tests on me it sometimes takes about a week before everything comes back. I hope you start...

4/13/2023 8:49 PM

Ulcerative Colitis
Been a long time since I was on here!

Bacon Girl, Well.... Butterfingers. I was hoping you'd have a quick response. I am just hoping this stuff kicks in faster...... And that you don't have to go to the hospital. Steroids make me a wild...

4/12/2023 8:18 PM

Ulcerative Colitis
Back after a long time

I'm sorry that you are struggling. UC/Crohn's are such invisible insidious diseases. I often feel like I am overwhelmed and fighting off something that doesn't have any set pattern or boundaries....

4/12/2023 7:38 PM

Ulcerative Colitis
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