Remicade and Surgery

So, I just need to vent here.  I was diagnosed with UC in March and was told I had moderate to severe colitis throughout my whole colon.  I took asacol and lialda and I was allergic to both.  I tried Imuran and I'm allergic to that to.  I switched doctors and my new one did a colonoscopy the begining of June and I got my results yesterday.  I have SEVERE Ulcerative Colitis throughout my whole colon.  She wants me to start pred.  again right away(l have used pred. once before and I was still going 4-5 times a day on it.  Which is better the 10-15 I guess).  She also is having me start remicade.  I'm very scared of this.  I have three kids at home that bring home everything.  I don't want to get cancer, or a serious infection, or whatever other horrible side effect that can happen on this drug.  She said this is my only option.  I'm very dehydrated and my vitamin D and Vitamin B12 are very low.  She almost admitted me to the hospital yesterday(I'm very dizzy and lightheaded).  She also said yesterday that my colitis is very bad and there will come a time(if the remi doesn't work) that medicine will not work anymore and I will need surgery so I need to prepare myself.  I'm freaked out.  I'm scared.  So if the remi don't work I need surgery and she hopes the pred. kicks in quick so I don't end up in the hospital.  I have three kids and a husband with out a job right now.  He also just found out he is going to need back surgery.  This has just been a bad year so far.  I'm scared I will get cancer or end up dying during surgery and I have three little kids at home.  Who will watch them while I recover if I need surgery.  She also said she doesn't know if the remi will help because my colitis is so bad.  I'm trying to prepare myself but I don't like either of my options.  I also don't like my quality of life right now.  The bathroom 10-15 times a day is horrible.  I don't want to go anywhere.  I miss alot of stuff with my kids because I'm in the bathroom all the time.  When I think of that surgery does sound good.  At least I'm not missing things in my life and I'm not taking these horrible drugs anymore and feeling lousy.  Sorry I just need to vent.  I HATE UC!

I started Remicade recently (just had my second infusion). I am also still on 40 mg of Prednisone and tapering off of it finally. I was going over 20 times a day and for a while, had nothing but blood when I went. Though I have gone 7 times already today, it was all in the morning (mornings and nights were always worst for me), and I didn't go at all in the night or last night past dinner time. The Remicade is actually working for me and I feel so much better! I was also very nervous to take it. I work in social work (well, I'm in school and doing internships still so am off for the summer but will be) and am in contact with a lot of people who do not get healthcare and are sick, so I am worried about being immuno-suppressed, but I didn't really have any other options. I have an 11 week old at home, which also makes things more scary. But I really think this is going to work for me, so I'm glad I tried it. Good luck to you

I have been living with UC since 1997. I have been in the hospital, had transfusions, on lots of different meds, and totally hate the disease. I was given remicade during my hospital stays. I was told if the remicade didn't work then I was looking at surgery. The remicade helped for a while. In May 2008 I had jaw surgery and was given antibiotics which flared my UC. I was put back on prednisone and on humira. The humira did not help my UC at all. In Feb I was put in the hospital and started feeling better. 3 weeks after the hospital I had a sinus infection and took antbiotics again. I told the dr I couldn't take antibiotics but he insisted and like a dummy I took them. My UC started flaring really bad. I lost 30lbs in 2 months, had to go to the bathroom at least 20 times a day. My GI DR wanted me to take the remicade in April but I had an allergic reaction to the last infusion and was scared to take it. I was put back on Imuran. I didn't improve any so I went ahead and took the remicade infusion this past tuesday(June 23). I was given meds prior to the infusion and was monitored very closely. I did not have a reaction and I feel alot better today. I'm hoping to get off the prednisone and Imuran now that I feel better. The Imuran makes my hair fall out when I take it and I was just told that my hip bone has died due to all the prednisone I have taken over the years. Taking the remicade was a hard decision to make but Im glad I took it and it worked this time. I wish you luck in your fight with UC. It is a terrible disease.

i went to my GI asking for surgery and he convinced me to try remi and it was awesomefora  few months.  But then it quit working for me.  So i went to him and i said, either you find this someone to take this thing out (my colon) or i will take it out myself.  And i was serious.

And i had surgery, april 17 2007, and i must tell you life is awesome now! no more missing stuff or wasting hours in the bathroom.  I do whatever whenever.

Now remi works great for some people and they can stay on it for long periods of time without problems.  And if that works for you, then thats awesome.  BUT i dont want peopel to think of surgery as a death sentence or as a horror,which is how it some times comes off to people.  trust me when i say an ileo or a jpouch is not the end of the world, it is, in fact the beginning of your new life!

good luck!

i was 29 when i had surgery, and i had an almost 2 year old, and thatpart was honestly the hardest for me, he lived with my granmda for 5 weeks following my surgery and then someon came to help me the last week. SO it was really hard notbeing ableto have my baby there iwth me and to be able to pick him up. It almost broke me.
BUT i got through it remembering that in a few weeks i wouldnt be missing beach trips with him ormaking thatbaby sit in the bathroom for hours, or (and this is stupid) but i even got excited about being able to take him shopping with me.
I did the what if there is a cure too, right up until the moment i was wheeled in for surger I think that that is normal.
I know this is hard to think of, cause as a mommy you automatically get sent to the bottom rung of the totem pole, i mena i am less important than the ant i just smushed, lol.
BUt there are times like this when you do have to put yourself first so that you can be a better parent.

wimomfthree:

I will be praying for you!  I just started Remicade on June 23.  I too have severe pancolitis, very low blood count....Anyway, I feel that something was working almost within 24 hours.  Feeling a good response within 5 to 7 days.  My stools are less, no bleeding, I have gas (a good thing) with no mucus.  I was too very nervous, but decided to give this a try.  I'm now tapering off the prednisone (I get crappy), so we'll see.  I will have my next Remicade on July 9th.  Please keep us posted.  This forum has helped me alot, people who truly understand this disease.  Take care! 

Remicade is heaven sent for me. I haven't had any side effects as of yet and I've been taking it for about 4 years now. Two weeks ago my husband had the worst cold ever; I just took the extra steps of washing my hands and wiping things with Lysol and so far I've been okay. We just come back from Philly; all the flights from California to Philly and back were full to the brim...so we'll see in the next few days how I made it through them! Good luck with your decision!