Diagnosed with UC four weeks ago

Mitzi'sMom, my prayers and good thoughts are with your daughter and your family. I hope this surgery sends her on the road to recovery and feeling good again. My daughter is having surgery within the month. It is overwhelming. I can't imagine having to face it as an emergency. Stay strong!

Thank you for your good wishes.  As your daughter is having surgery within the month, I only pray that it goes well.  Most surgeries are uncomplicated and the one I've been describing is definitely not the norm.  Yes, I am trying to stay strong, and now you must as well.  I wish only the best for your daughter and if and when you let us know when it is scheduled, I know you too will receive all these wonderful emails chock full of good wishes and prayers!!

I feel so bad for Mitzi. I could barely handle a really bad 2nd flare up and when i was first diagnosed i semi went mental. I couldn't imagine what this must be like for her. I am so sorry. When I started reading your posts I thought i could help but as i read on i saw that it surpased my story and experience.

what I went through as far as my second flare up started just like Mitzi's but it only went as far as Remiacade. I was in the hospital for 41 days at good old kaiser. They released me while i was still bleeding 3 times, I told them i wasn't feeling well enough to go home and they shouldn't release me and all 3 times within 2 hours i was passed out having someone call an ambulance. the first time i had a heart attack (that caused heart damage) from anemia and had to have a blood transfusion. the second time i passes out from severe dehydration because my intestines were not absorbing water properly. and the third time i bleed so much for so long i had to have 4 more blood transfusions. after reading what people wrote i think it may be due to the fact that they had my on cipro and flagyl for 5 weeks straight and things didn't calm down till i stopped taking it. Also, dilaudid is one hell of a drug. i was only on 2mg doses every 6 hours but it was enough to cause a slight addiction. So if she acts really cranky, moody or feels really crappy coming off of it. It's the darn narcotic. Also the pill form sucks. It didn't help with my pain and gave me a headache. I also lost 30lbs because i wasn't able to eat for two months and eventually i was put on TPN(IV food). They started me on Remicade while i was in the hospital. i go in for my third dose in two weeks. i haven't read the possible side effects of remicade. It seems to be working so far and i'm hopeful.

if someone knows some possible side effects of remicade could you please let me know what they are?

Also, I know we put a lot of trust in doctors and nurses but you really need to know your stuff, do your research and watch your own back. After so long in the hospital you know when nurses are acidently giving you the wrong medicing, the wrong doses, when they dont properly change your piccline end caps, doctors release you too soon, doctors prescibe wrong meds. I was lucky enough to have someone sleep in a cot next to my bed almost every night (mostly my dad) to make sure i was ok at night. the night staff was pretty neglectful at times. It's just important to know as much as possible.
Hospitals are scary and I'm glad Mitzi had such a loving parent who watched her back the whole way.

thanks judy. that was informative

CreamofRice, I see that you've also gone through such a terrible time in the past.

It makes me so angry when things are done for you, and to you, and you know in your heart that these are wrong options.  You are so right when you say that you have to keep an eye on what is being done by everyone who has a say in your care.  I'm glad that your father stayed with you at night.

 

I feel for you with your 41 day ordeal.  My daughter's GI group has five doctors, and each week they change and another doctor does hospital rounds.  The last week we had a doctor who was as cold as ice, she spoke to Mitzi and us standing by the door, particially behind the curtain.  She never showed any compassion or used any words to my daughter, such as "hon, it'll get better from here", or any endearment to better calm her down from the pain and fear she was experiencing.  The worst part is that she let the whole week go by without mentioning one word of the severe anemia and the possible need for a transfusion and went we mentioned possible surgery, the answer was always "let's not discuss this now".  Thankfully, when the surgeon was called she said that things could not have been worse and

surgery would have to be done to save Mitzi's life.  With all of my and my husband's watching and "looking after" her, this situation escaped our attention.

 

I hope the next round of Remicade will help you in your quest for a remission.  Just remember to always second guess what is being done to you.  I wish and pray for an easier time for you at your next Remicade infusion.

My heart goes out to you and your daughter. I know how difficult it is. You're not only battling the disease, you're also on a battle field of sorts with doctors and nurses for proper care. I know you have a lot on your hands right now, but you might consider inquiring as to who that particular doctor reports to and issuing a direct complaint in person and in writing, not just for yourself but for others in future who will likely also suffer under her treatment.

On a lighter side, my husband and I were terrified about a colectomy for my son. But it was something we had to do. He has adapted very very well to having a stoma. I strongly encourage you to visit the ostomy forum. The folks there are a very happy and thankful lot. After surgery, my son's symptoms didn't subside as we had hoped, and we subsequently discovered that he has Crohn's after all. But we are still grateful for the colectomy and so is our son because it keeps him out of the bathroom and lets him live his life. There are all sorts of tips and tricks and ways of managing life with stoma (physically and psychologically) and they work. I just hope at this point, that her disease is UC and that this surgery gets rid of it forever.

All the best, I've been thinking about you and praying for your family.
Please keep updating us on how Mitzi's doing.

JsMom