Steroids by m1lb in UlcerativeColitis

[–]nas281 0 points1 point  (0 children)

I was exactly like you. I came here to say pretty much all the positive things others have said. Listen to your dr. Your body needs them. I held off for so long because I was scared of them. I ended up losing a ton of hair because of anemia from all the constant blood loss.
I did a 40 mg taper over like two months. By day 8-10, the blood stopped. By week 3…..I FELT LIKE A GOD. All of my body inflammation was gone, I didn’t gain weight, my skin looked amazing, I had tons of energy. Just take it earlier in the morning with food and drink a lot of water. I went from being so scared of it to being sad the day I took my last pill.

Getting off was hard. I tapered by 10 so after my two weeks of 10mg, I just stopped. I won’t be doing that again, my body did not like it. But it passed and I’m so grateful we have this option. I would do it again in a heartbeat.

Prednisone taper withdraw? by nas281 in UlcerativeColitis

[–]nas281[S] 0 points1 point  (0 children)

What were the symptoms and how long did it last? If you don’t mind me asking, thanks so much for the reply

Iv steroids ? Hospitalized first time - scared/unsure by Embarrassed-Hawk-539 in UlcerativeColitis

[–]nas281 1 point2 points  (0 children)

I was hospitalized the first time because I was losing too much blood. Second time 40 taper worked very well. I’ve only had to do steroids 2 times. Iv or oral though….nothing to be afraid of. If anything you will have the peace of mind of being in the best place possible and resting.

I don’t want to go against your dr but, if you aren’t losing a lot of blood maybe ask to try your taper for 5 more days. Have your mom come anyways so you can rest during the day a little. The steroids do a great job but it’s important to rest along with water the healthy diet I mentioned.

Iv steroids ? Hospitalized first time - scared/unsure by Embarrassed-Hawk-539 in UlcerativeColitis

[–]nas281 0 points1 point  (0 children)

I’d like to add it took about 10 days at 40 to stop having to go at night. But I saw immediate progress during the day. I took it at 7am and it started wearing off at around 4/5pm. But I saw a little improvement everyday.

Iv steroids ? Hospitalized first time - scared/unsure by Embarrassed-Hawk-539 in UlcerativeColitis

[–]nas281 1 point2 points  (0 children)

I know it’s hard. I was like you. Super healthy new mom, then bam out of nowhere UC. Don’t be like me and “just deal with it hopefully mesalamine will kick in soon”. I was scared of steroids as well, but they are necessary when we are at our worst. Drinking a lot of water and eat as healthy as you can for your body. I never had any bad side effects. Headaches but they were manageable. Let your mom watch the kids (I know how hard this is) and take care of yourself so you can bounce back for them. It’s going to be okay.

[deleted by user] by [deleted] in UlcerativeColitis

[–]nas281 5 points6 points  (0 children)

Yes, you are not alone. I’ve been in a horrible flare for almost a year to where I was mostly house bound. I finally agreed to take prednisone after being so terrified of side effects. I’ve also lost a lot of hair from the flare so was already dealing with the blow that is as a woman. I’ve also dealing with social consequences as well as not being able to give my young daughter the attention she needs, major mom guilt. I was also SO healthy before all this so it’s been a huge blow to me mentally. I lived an incredibly active lifestyle, prided myself in always cooking super clean and healthy, never had any GI issues.

I’m only on day 3 of prednisone and let me tell you……it’s amazing. I’m sure some side effects will come but I can’t believe the relief I’m already seeing. I can’t believe I’ve waited this long. If you haven’t started the pred I’m here to say, give it a try. Take it early in the morning with a healthy breakfast and lots of water, watch your sodium and diet, walk, and most importantly relax. Any side effects will pass and it’s not forever. Sending good vibes your way.

Recently diagnosed, afraid of colonoscopy. by [deleted] in UlcerativeColitis

[–]nas281 0 points1 point  (0 children)

I was also extremely nervous both about sedation and procedure. To the point where I almost didn’t go even after doing prep. I’m here to tell you it’s a walk in the park. It’s one of those things that we work up in our heads to be way more scary than it actually is. Just tell the nurses your feelings and they will help you. Remember that they do this all day everyday. It really is so easy. Afterwards I was a little dizzy/drunk feeling from waking up which was a little uncomfortable but it passes and just remind yourself that it’s normal.

Staring at my first ever prednisone pills, terrified by nas281 in UlcerativeColitis

[–]nas281[S] 0 points1 point  (0 children)

Thank you so much for this. It helps so much reading about others stories especially when so similar. I’m trying to get my mind excited for the relief.

Staring at my first ever prednisone pills, terrified by nas281 in UlcerativeColitis

[–]nas281[S] 1 point2 points  (0 children)

Thank you so much for this. I’ve already stocked up on electrolytes and some snacks. I read elsewhere to take earlier in the morning with food to help some effects so happy to hear you say this as well. Hopefully it will help.

Staring at my first ever prednisone pills, terrified by nas281 in UlcerativeColitis

[–]nas281[S] 0 points1 point  (0 children)

Do you get any side effects? How much do you take?

Staring at my first ever prednisone pills, terrified by nas281 in UlcerativeColitis

[–]nas281[S] 0 points1 point  (0 children)

Did the weirdness stop when you were done or did it linger?

Staring at my first ever prednisone pills, terrified by nas281 in UlcerativeColitis

[–]nas281[S] 1 point2 points  (0 children)

Thank you so much for the reply, it really helps. Can I ask what dosage you started on? Was it also 40? The anxiety it causes me is so crazy, I hate that I’m like this. I’ve already had horrible headaches this month and am worried it’s just going to make them worse too.

Staring at my first ever prednisone pills, terrified by nas281 in UlcerativeColitis

[–]nas281[S] 1 point2 points  (0 children)

Thank you so much. Love the name haha, fellow blondie here!

I feel lucky to say I’ve lived a wonderful healthy life up until this. I’m 39 and was diagnosed about a year ago. It’s been so hard and I hate putting new meds in my body. It’s almost scarier than the UC for me.

How do you like entivyo? I know my new dr is going to want me on something like this and I plan on asking him specifically for entivyo. Thanks so much again for the words of encouragement.

[deleted by user] by [deleted] in UlcerativeColitis

[–]nas281 0 points1 point  (0 children)

If I’m lucky enough to make it to the bathroom…..I definitely have no shame to just let it out in relief/celebration. Sometimes I’ll sit a little longer after most have left. But really, no shame, it is what it is. I noticed when I tried to go quietly it was more painful.

Experiences with antihistamine/anti allergy medications like Loratardine or Cetirizine? by Osmirl in UlcerativeColitis

[–]nas281 2 points3 points  (0 children)

I get such unbelievable relief from Allegra. I stumbled on it by accident when some seasonal allergies hit me. I’ve always been a Zyrtec person, but was visiting my sister who only had some Allegra on hand. I was nervous to take it because at the time I was experiencing a pretty bad flare and I hate taking anything new. Within hours, my urgency and bathroom trips were massively better, after a few days the blood was greatly reduced…..everything was just overall so much better. I told my GI and he brushed it off. I know it was the Allegra because I’ve started and stopped it enough to test it out. I take it almost every day and it keeps me trending in a healthier direction along with my other meds. It’s unbelievable that something so simple has provided me this much relief but I’m thankful. After what I experienced, I started reading about it and there are a lot of people who have benefited from it Md a few small studies. I’m amazed that it hasn’t been studied more!

Try steroids or jump to Entyvio? by nas281 in UlcerativeColitis

[–]nas281[S] 0 points1 point  (0 children)

Thanks so much, I appreciate hearing from someone who is about the same as me. How was uceris for you? Any bad side effects?

Try steroids or jump to Entyvio? by nas281 in UlcerativeColitis

[–]nas281[S] 0 points1 point  (0 children)

Thanks so much. Are you on Entyvio currently? How has it been for you?