Introducing Myself, that's all...

[Bausarita]

Hi
I was diagnosed with UC at 16. I flare approx. every 10 years and, when I do - it's ugly. So I started a flare about 5 weeks ago. I choose not to take maintenance meds between flares because they are so far apart. I have a huge aversion to prednisone because of the side affects. I believe that Entocort, methotrexate, 6mp & prednisone or a combination thereof gave me thyroid cancer. Which I had wholly and fully removed along with 6 parathyroids. This flare I am a complete fright; attitude and all. 40 mg prednisone, 2.4 grams Lialda, 0.25 Xanax (I'm just sure he gives me this to shut me up), Proctosol HC 2.5% rectally, 20 mg Prozac & .125 brand Synthroid daily (no generic thyroid meds for persons who've had cancer). Hate, hate, hate, hate prednisone. Told him I'm not taking it but broke down 2 days ago and started. He called me in Uceris and I picked that up today and I'll start it tomorrow instead of prednisone. I'm pissed off that they advertise it minus the horrid side affects of prednisone yet almost everyone on here says it DOES. I hate pharmaceutical companies like I hate prednisone.

My symptoms: straight up blood, mucous & water. I have no idea where my stool actually is or goes. It totally freaks me out. 10 or less bm a day ( minus the actual stool so how is it a bm??? Where is my poop???) lots of abdominal pain, lots of splashing and gurgling over my intestines, I mean I can like here it out here!!! Poor bowel continence. Use fem pads and toilet paper plugs to make it thru the day. It hurts to go, it hurts not to go.
It makes me stay home, it makes me not eat. I feel sorry for myself like a dang baby. I don't want to do anything. I can't have sex whenever I want, my God I would just die if I shot mucous and blood all over my husband. It's disgusting and embarrassing and life altering. Hate, hate, hate being sick.
I'll be more pleasant when I've gotten over myself. Sorry, it just makes me so sad and pathetic and I'm not near as sick as some of you. Shame on me.
You guys need a wider variety of Emoticons cause I have a lot of emotions.
Sincerely, NetNet

 

[Sef0912]

No matter how sick you are or are not, each person experiences "how sick" they are differently. I hope that you get the help you need this time and that your doctor listens to and addresses your concerns, especially with the prednisone. Prednisone sucks! It makes you feel good and so bad at the same time, or at least that is how I feel. Don't shame yourself, you are worth more than that and IBD is a hard pill to swallow. Take it one day at a time and feel free to be emotional. Everyone here is here to support you, not shame you, and not undermine your symptoms. I hope that relief comes soon.

 

[Bausarita]

Thank you Sef0912, I appreciate your kind, validating words. I really do.

 

[juggys69]

No matter how sick you are or are not, each person experiences "how sick" they are differently. I hope that you get the help you need this time and that your doctor listens to and addresses your concerns, especially with the prednisone. Prednisone sucks! It makes you feel good and so bad at the same time, or at least that is how I feel. Don't shame yourself, you are worth more than that and IBD is a hard pill to swallow. Take it one day at a time and feel free to be emotional. Everyone here is here to support you, not shame you, and not undermine your symptoms. I hope that relief comes soon.

Amen.

 

[Arkansas Crohny]

Bausarita I really hope u feel better soon !! My Dr wants me to start taking prednisone for my joint pain he won't listen to me . I think it is remicade causing the pain in joints . I hate prednisone to ! Haven't taken it in about 3 years but have taken entocort and I am still on 6mp with the remicade .

 

[valleysangel92]

Hello and welcome to the forum.

Please don't be too hard on yourself. Pain and sickness is such an individual thing. Sure, there probably are people sicker than you, and there are probably people sicker than me too, but that doesn't mean we aren't sick. It doesn't mean we don't deserve support and understanding and kindness and it doesn't mean we won't feel horrible sometimes.

The emotions you're experiencing aren't anything to be ashamed of, you are sick, you are in pain, you have a valid real illness and you deserve to be supported.

I can relate to hating prednisolone, I hate it too, I have been stuck on it since June and I can't wait to get off of it.

I'm not familiar with uceris, but there is a steroid called buedesonide ( brand entocort or budenofalk) which has fewer side effects than Pred, so it might be worth asking about that.

Don't be embarrassed or ashamed to reach out to us whenever and as much as you need. We all understand how much of a rollercoaster this disease is, we won't judge you and we won't think any less of you. We can't promise that we will always have the answers or be able to make things better, but at the very least we will try to support you and share our own experiences to help you see that you are not alone.