New here - introducing myself

I've been checking out this site for a while and am so happy with all the information that is available here. It's nice to know that I'm not alone with this awful disease.

I was diagnosed with UC in December 2010 when I was 3 months pregnant with my daughter. about a month after she was born, I was hospitalized for 9 days with a severe flare up that caused me to go to the bathroom about 20 times a day. I needed a blood transfusion and was put on IV steroids, imuran and asacol. They wanted to put me on remicade but I was scared and wanted to try the other meds first to see if that worked.

I see my GI next week and I know the next step for me is Remicade. After my last round of prednisone I started flaring up again so I was put on 40 mg again. When I tapered down to 20 mg I started going 10-15 times a day. My GI was on vacation so my regular doctor put me back up to 40 mg again. I've been on 40 mg for the last week and I'm still the same. I'm so sick of being on steroids and worried about what long term effects it's causing, I just want off this stuff!

I have strongly been considering surgery and plan to get my GI to refer me to a colorectal surgeon. I'm just tired of all the meds and diets and trying this and that hoping something will work, it's just frustrating. I want to be able to leave the house without worrying about having an accident. I hate not being able to go places with my husband and daughter because I don't feel good.

Sorry for turning this into a rant, but I'm sure you all understand how frustrating it is. Thanks for listening.

Have you thought about LDN? It may not work for everyone but I was going up to 30 times per day and was at my limit when I tried it. I hated Prednisone and am so thankful I gave the LDN 6 weeks. It worked. I have a post I put up https://www.healingwell.com/community/default.aspx?f=38&m=2099301 I just added to it today which is why I saw your post.

I pray you feel better and get relief.

I have thought about asking my GI about LDN, I just learned about it recently so it's totally new to me. Also, I have tried salofalk enemas as well as pentasa suppositories but they didn't seem to help.

The Remicade is worth a try as long as you don't mind being in a strong drug like that. I did give it a shot but it didnt work. I had j pouch surgery two years ago. I wish I didn't suffer so long and did it a lot sooner. It's so nice being rid of UC for good and not having to worry when the next flare will come. Best wishes you!

colgone1 - how long did it take for LDN to work for you?

I know to some people surgery may seem extreme, but honestly, I would rather have it done than be sick all the time. Even if remicade, LDN or other treatments work initially, the question is how long will they be effective? I know each person is different and some respond well to treatments and others not so much. I'm sure I sound stubborn and I am lol.

I don't want to live my life wondering when the next flare up will happen, and I think I would truly be relieved after surgery. I understand it's a major decision but I would rather be able to decide for myself to have surgery rather than it be an emergency situation where I don't have a choice, which almost happened to me last year. I've suffered (along with my family) enough with being sick and I want to provide the best life for my daughter. I want to be able to take her places that we just can't do right now since I'm always flaring up.

Babygoose: you sound like me: i too want something 'sustainable' and has long term efficacy not something that stops working after a while. You want some control back over your life! Totally understand!
The thing with surgery is that you can also get pouchitis etc. So i dunno but nothing is certain; i'd say exhaust all your options and if something can get you into remission (thats not dangerous long term like biologics) then go for it. Who knows what will happen tomorrow? I mean maybe in 10 years there will be better treatments.