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CCinPA

HealingWell Forum
>
Member Profile
Display Name
CCinPA
Profile Created
12/30/2014 5:30 AM
Last Seen
5/16/2022 10:11 AM
Total Posts
2105

Last 50 Posts

Does being around people-since Covid-bother you?

Clo -- that's a tough one. Everyone is tired of wearing masks so your hubby isn't alone in feeling that way. For you though, it's too dangerous to be without one and if he goes without he then...

5/16/2022 10:09 AM

Ulcerative Colitis
Perimenopause effect on UC?

I am the same as Countess -- I was already deep into peri menopause with wildly crazy hormones when I developed UC...

5/16/2022 4:36 AM

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

Never ceases to amaze me that the number of Covid deaths gets so easily dismissed by some. I have heard people say that it's over inflated because most of "those people" were old or unhealthy anyway...

5/16/2022 4:29 AM

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

I need to get some of those shirts, Clo. I think you said they were a gift. Any idea where they got them?...

5/14/2022 10:14 PM

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

I've been hearing good things about the anti viral Paxlovid. A co-worker's unvaccinated wife felt better within 24 hours of taking it and she was pretty sick. She said it was a game changer. Then the...

5/14/2022 10:09 PM

Ulcerative Colitis
Is it a Flare ? Urgent Help Please

Are you currently on any meds?...

5/13/2022 3:00 PM

Ulcerative Colitis
Leaking - is this normal?

I agree with the suggestions to get on oral mesalamine ASAP while you are waiting for the ok to use rectal meds. The inflammation may have spread further and the oral meds will help to keep it from...

5/10/2022 1:38 PM

Ulcerative Colitis
Interrupted Sleep

My suggestion would be to push to try 10 mg every 4 weeks (max dose) of inflectra. Clearly 5 mg is not helping like it should be since you are already having more symptoms since you dropped to 15 mg...

5/10/2022 1:32 PM

Ulcerative Colitis
NCOT... How are you?.

Clo -- that rooster is a psychopath! This story took a bit of a dark turn since it's attacking children now too! He should be a chicken dinner soon before he gets older and is too tough to eat ;)...

5/10/2022 1:17 PM

Ulcerative Colitis
Tell me about Remicade and biosimilars

Did the infusion center change that on their own? If you are in the U.S. that sounds illegal. Your insurance and doctor would have authorized infliximab and the infusion center can't just change what...

5/5/2022 11:35 AM

Ulcerative Colitis
NCOT... How are you?.

So sorry you are feeling so down, Miranda. It certainly is understandable though. You have been through a lot with your health and the general state of the world is depressing all by itself. I...

5/3/2022 7:33 AM

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

Clo -- you should be able to get Evusheld even with some antibodies from the vaccine. The fact sheets on it encourage getting the vaccines if you are able. Evusheld us a pre-treatment ... instead of...

5/3/2022 3:50 AM

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

Keith -- I had no side effects -- GI or otherwise. There are 2 shots -- one of each of the 2 types of monoclonal antibodies that are what Evusheld is. The injections are given in the gluteal muscles...

5/1/2022 12:10 PM

Ulcerative Colitis
Remicade causing UTIs?

You are between a rock and a hard place. Have you ever had any cortisone shots in your knees? I get them and they work pretty well. Doc said I can get them every 3 months, but I am usually good for...

5/1/2022 6:34 AM

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

I don't think you have anything to be embarrassed about. Those who are not high risk have no idea what it's like for someone who is. I had to go back to the office to work last week because we were...

5/1/2022 6:13 AM

Ulcerative Colitis
Symptoms - pretty mild?

Did you talk to your surgeon to find out if what you are experiencing is normal and find out how long it will be until the bleeding stops? Your colon is likely swollen either from a flare or just...

4/27/2022 5:37 PM

Ulcerative Colitis
Symptoms - pretty mild?

Are you using a patient portal to have this in writing? If not, I recommend giving that a try. Explain the situation as you have above. Don't blue sky it nor over dramatize ... just plainly state...

4/27/2022 6:43 AM

Ulcerative Colitis
Remicade moved.

Seems unusual that they did that. Your doc must want to jolt your system. How bad are your symptoms? If you are ok after your infusions but they wear off before your next infusion, the max frequency...

4/27/2022 6:34 AM

Ulcerative Colitis
Symptoms - pretty mild?

How long ago was the hemorrhoid surgery? Has your surgeon checked to make sure you are healing properly? I would check on that before anything else. It sounds like you are inflamed and that can cause...

4/26/2022 5:21 PM

Ulcerative Colitis
Interrupted Sleep

You could do that once you get to 10. After 20 mg, maybe drop 5 mg to 15 mg for a week, then another 5 mg to 10 for a week and then slow to 2.5mg drops each week. No harm in doing the 2.5 mg drops...

4/21/2022 2:09 PM

Ulcerative Colitis
Interrupted Sleep

Yeh, pred can make you hungry. Glad you are doing well. The drop from 20 on is where to slow down the taper. I always wanted to rush, but after too many times of having to repeat the tapers I learned...

4/21/2022 10:57 AM

Ulcerative Colitis
Oral Mesalamine

My doc finally figured out how to order the Evusheld injections. They called to schedule and I am set up to get them on 4/28 (next week). I had my remicade infusion today and asked the nurses about...

4/21/2022 10:51 AM

Ulcerative Colitis
Adalimumab so far...

I was referring to this: "I'm not sure if its coincidence that on the 11th I went down to 1 injection every 2 weeks now and dropped from 4 1,200mg Mezavant (mesalazine) pills to 2 last week" Since...

4/20/2022 7:26 AM

Ulcerative Colitis
Hi

I used steroid enemas for almost a year at one point without issue....

4/20/2022 5:11 AM

Ulcerative Colitis
Immunosuppressive

Prednisone...

4/20/2022 5:08 AM

Ulcerative Colitis
Adalimumab so far...

I wouldn't have dropped any of the other meds so fast. Can you go back up on the mesalamine until you are in a sustained remission? Sometimes foods can cause gastro issues, or even just an ordinary...

4/20/2022 5:07 AM

Ulcerative Colitis
Low Blood levels??? Urgency??

You should contact your doc and find out what level was low and what (if anything should be done about it). I wouldn't just assume it's the remicade levels unless you recently had a test for that....

4/20/2022 4:55 AM

Ulcerative Colitis
Imuran to Biologic even in remission?

One more thing .. does your cousin have a very small build? I ask because Imuran is weight based and therapeutic dose for a 100 pound person would be 75 mg -125 mg. If he weighs more than that it's...

4/17/2022 8:05 PM

Ulcerative Colitis
Imuran to Biologic even in remission?

How old is your cousin?...

4/17/2022 7:54 PM

Ulcerative Colitis
Imuran to Biologic even in remission?

My first GI who I really liked (then he retired) told me that he had a patient on Imuran for 30 years with no issues. Dunno ... get a 3rd opinion?...

4/17/2022 7:53 PM

Ulcerative Colitis
Oral Mesalamine

Faithmac -- how did the Evusheld injections go? I asked my doc about them and he hadn't heard of it. So I checked the PA Dept of Health and found an email address to get more info for scheduling so I...

4/15/2022 9:30 AM

Ulcerative Colitis
Remicade causing UTIs?

sheesh, Clo! You are a mess :) Hopefully, this will get rid of the UTI. If you have to have surgery again, can they remove the rectum, anus, and any remaining part of the colon you aren't using?...

4/13/2022 10:34 AM

Ulcerative Colitis
Pain, ulcers - looking for an advice

Old Mike ... appreciate you thinking of me, but as long as I am on the meds I am ok and my PCP isn't concerned about long term PPIs. Believe me ... I tried a lot of stuff and none worked. I even...

4/11/2022 9:43 PM

Ulcerative Colitis
Pain, ulcers - looking for an advice

Gloria -- I found this link about baking soda for acid reflux. It lists how to dose it. I have high blood pressure and the last thing I need is more sodium so I won't be trying it and it's not...

4/10/2022 6:31 PM

Ulcerative Colitis
Long term use of PPIs?

Surgery isn't for me ... I am a wimp :( I hope you are feeling better now. Did you always have asthma or was it because of the PPIs?...

4/7/2022 4:05 PM

GERD & Acid Reflux
Prednisone dosing schedule

I usually lay on my back to administer the enema -- easier for me rather than reaching around behind -- and then lay on my side for at least 20 minutes. Just a tip in case that would be more...

4/7/2022 3:57 PM

Ulcerative Colitis
Long term use of PPIs?

Thanks, Sharon. Knowing others have been on PPIs for a long time eases my mind. Did you have surgery because they stopped working?...

4/7/2022 10:38 AM

GERD & Acid Reflux
Update on Remicade

yep -- my journey with remi is in my sig :)...

4/7/2022 10:34 AM

Ulcerative Colitis
Prednisone dosing schedule

I usually do a split dose of pred -- half in the morning and half in the evening. That actually helped me sleep because single dose was wearing off by bed time and I had to get up every few hours to...

4/7/2022 10:32 AM

Ulcerative Colitis
Update on Remicade

That's good news, Faith! Even though my levels were high similar to yours when I wasn't getting to complete remission we increased anyway and it made all the difference. Doc said some people just...

4/7/2022 10:23 AM

Ulcerative Colitis
Pain, ulcers - looking for an advice

Thanks, Seeker. I've never noticed an effect on my UC. Will ask my doc about being on it for so long. I posted on the GERD forum to see if anyone there was on a PPI long term like this....

4/7/2022 10:20 AM

Ulcerative Colitis
Long term use of PPIs?

I was diagnosed about 8 years ago with silent acid reflux. I have no symptoms other than a horrible cough that went away almost immediately upon starting omeprazole. Since I read that long term use...

4/7/2022 7:13 AM

GERD & Acid Reflux
Will I forever be anxious over infusions?

That's good news, Haley! Glad this is working for you!! Nice to feel like you have a life that doesn't revolve around the toilet, isn't it? Think of the infusions as your magic elixir :)...

4/7/2022 5:00 AM

Ulcerative Colitis
Interrupted Sleep

Rusty, makes sense you don't want to use an enema right now. I remember you talking about the fistula before. I figured there was a reason you weren't using enemas, but I couldn't remember what it...

4/7/2022 4:55 AM

Ulcerative Colitis
Interrupted Sleep

Let is know what he says. Did you ask about rectal meds? I was very hesitant to try them -- seemed too icky for me. But once I did I was surprised at how easy they are to use. I used to use generic...

4/6/2022 3:22 PM

Ulcerative Colitis
Pain, ulcers - looking for an advice

I have silent acid reflux -- only symptom is chronic severe coughing. I went on PPIs about 8 years ago for the cough. I had tried everything else with the doc and nothing was calming the cough. An...

4/6/2022 3:15 PM

Ulcerative Colitis
Interrupted Sleep

Personally, I wouldn't mess around with prednisone like this. You could end up getting your body so used to these low doses that you could have an extremely hard time getting off of it and do some...

4/6/2022 9:11 AM

Ulcerative Colitis
Update on Remicade

That doesn't sound good. Might be getting some antibodies. You will know when you get your test results. If the antibodies aren't very high, I believe it can be corrected with a higher dose of...

4/6/2022 8:56 AM

Ulcerative Colitis
Will I forever be anxious over infusions?

oh ... and that nurse was an a--...

4/5/2022 7:15 PM

Ulcerative Colitis
Will I forever be anxious over infusions?

I sorta look forward to the infusions now. I do them on Thursday morning so I take the morning off work. I take along a book, kick back and relax in a heated recliner that massages. Sometimes I take...

4/5/2022 7:13 PM

Ulcerative Colitis
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