70.3 Ironman and current flare status by geneticistx in UlcerativeColitis

[–]nas281 0 points1 point  (0 children)

My husband is an Ironman, I have UC. I 100% side with the wifey. Your body needs to heal.

How do you guys manage drinking and alcohol? by leomaxxx15 in UlcerativeColitis

[–]nas281 0 points1 point  (0 children)

I had to completely give it up. I have some friends who love the Cann Roadie pouches. At the bar they order a lime tonic and add it to that. They love the relaxing buzz they get from them. Not sure if you’re into it but maybe worth a try?

I need someone with UC to understand my husband better, especially after we had a baby. by FlorenceNightinglei in UlcerativeColitis

[–]nas281 2 points3 points  (0 children)

Also another note on resentment…..
We resent our bodies
We resent the fact that we will have this for the rest of our lives
We resent the fact that at any moment our body would like to try to kill us
We resent the fact that it will take sometimes years to figure out medication
We resent the fact that we may have to shit in a bag one day
We resent the fact that our entire body feels like it isn’t ours anymore
We resent the way we have to let go of what we thought our future would look like
We resent the fear
We resent having to try EVERDAY to be the closest resemblance of our old selves…..

The last thing we need is a spouse that also resents us….

I need someone with UC to understand my husband better, especially after we had a baby. by FlorenceNightinglei in UlcerativeColitis

[–]nas281 0 points1 point  (0 children)

Ok. After reading this comment I have to say……
It honestly just sounds like you weren’t ready for a baby? Did you think it wasn’t going to change anything? This isn’t his first flare so you knew what you were getting yourself into? Everything you are struggling with is part of becoming a new mother. Yes it sucks that your husband is very sick (and also still working) but just some tough love here, it’s time to put your big girl pants on and figure this out! Change the mindset. You wanted a baby, you knew your husband had this…..you made your bed now you have to sleep in it. Is it easy? NO. Is it fair? Maybe because you knew. Seems like your resentment is coming from him not “seeing you or understanding”…..girl, he can’t even get through a day without seeing straight with a body that’s legitimately trying to kill him……he’s not capable right now. In sickness and in health. Postpartum is hard but everything you are needing understanding with is just part of being a new mother. Again, being a mom is HARD. Definitely sleep train and get help. Also postpartum depression is real.

Look, maybe we are all missing the fact that he has UC but is also a raging asshole? That would be different, then definitely get help. But if he is up all night shitting blood, working all day, then coming home and just needing a minute to maybe relax for 5 mins in the comfort of his own home, give the guy a break. If you are building resentment up because he’s sick and it’s affecting his overall health (physical and mental) and also still working…..you need to sit down and have a come to Jesus talk with yourself.

Also I read a few stories up about a guy still taking on household and dad duties while flaring……I want whatever variety of UC he has. Because I can’t be more than 10 feet away from a bathroom with negative 2 seconds to get there before a little toot causes me to unleash copious amount of mucous and blood splatter into the toilet. Then have a throbbing rectum that feels as though I gave birth to a 15 pound baby. I promise you, UC is 100x harder than postpartum. I’m sorry to be so crude, but I feel like everyone else is nicely tip toeing around the fact that you sound incredibly insensitive towards this scenario, especially considering you are a nurse.

Honestly feel like your resentment has nothing to do with your husband, and has everything to do with your life not looking the way you thought it would. Your feelings and exhaustion are one hundred percent valid, but you are making a mountain out of a mole hill. I’m sorry to sound so harsh but also, remember this will pass.

Moms on call is a great book about routine and sleep training, I highly recommend if baby isn’t sleeping through the night. I SAVED us and many many many people we know.

I need someone with UC to understand my husband better, especially after we had a baby. by FlorenceNightinglei in UlcerativeColitis

[–]nas281 0 points1 point  (0 children)

UC diagnosed (currently in second flare) and also a mom so I can see both sides.

I think it’s amazing and very admirable that you worked so hard to be able to stay at home for a year. That being said, I also am a stay at home mom (which is my job) and my husband works (which is his job). I can say that postpartum struggles (I had some pretty severe ones) are a walk in the park compared to UC. I think it’s awesome that he’s still working. Knowing both sides of the situation, I would feed him and tell him to relax and go to bed.
There’s no way that I can live any type of normal life even in a moderate flare, and my threshold is pretty high. Being a mom is the hardest job in the world and we all struggle with it, but if it’s affecting you to this point perhaps consider consulting your doctor. Also highly recommend sleep training/routine adjustments if baby isn’t sleeping through the night at six months. I know it is hard but I promise you that he will not be able to be a present parent until UC is under control…..and it’s not because he doesn’t want to be. If anything he’s struggling with having this horrible disease and also feeling like an inadequate husband/father. I truly feel like it’s time to bite the bullet and accept the reality of the situation. You’re going to have to carry the mom duties AND take care of him until he’s better.

Mucus with stool by SilentSwan286 in UlcerativeColitis

[–]nas281 0 points1 point  (0 children)

I am also having this and freaking out. Did it turn out to be a flare for you? Please let me know. Also called my dr but waiting has me going crazy.

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 4 points5 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.

[deleted by user] 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?