Remicade and Surgery

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WIMOMOFTHREE
Veteran Member


Date Joined Apr 2009
Total Posts : 654
   Posted 6/27/2009 7:50 AM (GMT -6)   
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!

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/27/2009 9:15 AM (GMT -6)   

Take a deep breath and try to relax.

There are lots of people on this board who are in remission because of remicade.  Remicade just might put you in remission.  However, if the fear of cancer is too great than your only option is surgery.  I had surgery and can tell you that I have never heard of anyone dying during a proctocolectomy.  

I think either choice will make you a more involved mom than you are now.  Severe UC robs us of our ability to do anything successfully. 

Sue

 


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 6/27/2009 10:29 AM (GMT -6)   
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
26 year old female
Diagnosed with unspecified UC 11/08 by flex. sig. as I was pregnant at the time and did not want to be put under for a colonoscopy
Breastfeeding my baby boy (born 4/8/09)
20 mg Prednisone AM, 20 mg PM (tapering from 60mg a day)
Started Remicade 6/11/09
Was on Asacol (2400mg or 3600mg a day) for 6 months with no success


Hopeful4uc
Regular Member


Date Joined Jun 2009
Total Posts : 90
   Posted 6/27/2009 10:35 AM (GMT -6)   
Hello!  I too have severe pancolitis!  I have been on the medication ride for about 4 years, tried aasocol, 6MP, prednisone, Lialda and now just started Remicade.  My GI suggested it about 1 year ago at this time and I said oh, I'll wait and see.  Within that 1 year, after trying to take some vitamins like calcium and vit D, I got a major flare.  My blood count down very low, not transfussion state, but close. 
 
It was a hard discussion to make to start Remicade, but I had my first infusion last Tues. 6/23.  I could feel that something is working, for about 2 days my stools starting to form, then now on the third day not so much.  However, I only go to the bathroom about 3 to 4 times day (but no blood...improvement there)  I figure that because I'm so bad that I need to wait and see after I receive all loading doses (3).  I weigh only about 132 lbs, so I only receive about 300mg or 3 vials. 
 
Give it a try and see if it works!  The severe side effects are serious, but statistically low.  Be hopeful!  With my first infusion I felt tired that day of infusion and the next day....slight stomache, and headache on third day (but could be weather related...very humid out lately).  If this does not work, I too maybe faced with the surgery.  My GI did not suggest it yet, he suggest different meds.  I am hopeful that something will work.  I have kids, but teenagers now....and yes they see how Mommy is.....we can do the best we can.  I too hate UC!! 
Good luck in what you decide!!  Let us know how it goes for you!  This forum has been a Godsend for me, makes me feel like I'm not the only one with this disease.  rolleyes
 
 
                                           
48 yrs old female.  Dx with proctitis in 2005, left-sided colitis in 2006, now pancolitis UC in June 2009.
Aasocol, 6MP, prednisone (taper), Lialda. 
Remicade 1 infusion 6/23/09.
Cultural, multi-vitamin
 
 
 

PMH1957
New Member


Date Joined Dec 2007
Total Posts : 14
   Posted 6/27/2009 11:13 AM (GMT -6)   
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.

diaper man
Regular Member


Date Joined May 2009
Total Posts : 122
   Posted 6/27/2009 11:19 AM (GMT -6)   
I also had my first infusion on Tuesday 6-23-09. The next day after the infusion I only went 4 times which is way less than my normal 20 times. But since then I have gone back to my old ways. My doc said that usually you start to feel the first effect about a week after and possibly 4 to 6 weeks. Anyway if the Remicade does not work then it is possibly surgery time. I am running out of meds.
Diagnosed Crohns/Colitis Jan 2007 changed to UC June 09.  Allergic to 5sa. Currently taking Humira Hydrocortisone suppositories, Canasa suppositories  started Remicade 06/23/09,  Budesonide. Colitis in last part of Colon.  Currently bleeding every bowel movement. 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/28/2009 2:50 AM (GMT -6)   
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!

WIMOMOFTHREE
Veteran Member


Date Joined Apr 2009
Total Posts : 654
   Posted 6/28/2009 3:19 AM (GMT -6)   
Thanks everyone for the advice.  It makes me feel better to know that I'm not the only one going through this.  I'm trying to just take it step by step it just seems to be happening so fast.  When I was diagnosed I thought okay I have a few years to try the meds and if they don't work then surgery.  That's not the case(I was diagnosed March 2009).  So, I'm trying to digest all of this.  I know surgery isn't the end of the world and sometimes with the way I feel I think it would be a God send.  It is just scary to me mostly because I have the three kids but I know if I have it I wouldn't miss things anymore.  I will try the remicade and I pray it will work.  Even if it buys me a couple months or years that is great.  I'm only 29 so I was hoping in my life time there would be a cure or different surgery options.  I would hate to have surgery and then a cure is found.  It's not in our hands is it?  Anyways,  thanks for the advice I feel alot better.  I will keep everyone posted.  I should start remicade with in the month. 

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/28/2009 3:39 AM (GMT -6)   
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.

qazwsx12
Regular Member


Date Joined Nov 2008
Total Posts : 63
   Posted 6/28/2009 9:21 AM (GMT -6)   
Remicade/Humira both seem pretty benign to me as far as side effects, at least short term. Unfortunately they're not working so I think I'm going into surgery, tired of feeling like crap, shrinking muscles and being quick tempered from the prednisone. Prednisone scares me more than Remicade does. A decent medication alternative probably won't be around for at least 5 more years. It probably takes 5 years just to get through the FDA trials and whatnot. I find the "what if there's a cure" thinking to be counter productive and just keeping people in the cycle of prednisone longer than they should be, this is what happened to me and I think I'm going to go for surgery while I'm still somewhat healthy and young. I figure eventually I'm going to need surgery to matter what, at this rate it would only be worth holding off surgery if I can remain in remittion for at least a year, which I think it wishful thinking.

Post Edited (qazwsx12) : 6/28/2009 8:27:30 AM (GMT-6)


Hopeful4uc
Regular Member


Date Joined Jun 2009
Total Posts : 90
   Posted 6/30/2009 8:33 AM (GMT -6)   

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! 

 


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 6/30/2009 8:49 AM (GMT -6)   
After a five-year severe flare, Remicade got me into remission after two infusions, and has kept me there for more than three years. I've taken antibiotics, had surgery, moved across the country with no UC flares.

I hope it works just as well for you.
Judy
 
Ulcerative colitis forum co-moderator
 
Moderate to severe left-sided UC diagnosed 2001.
Flared for 5 years, finally in remission with Remicade since March 2006.
Avascular necrosis in both shoulders is my "forever" gift from steroids.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. 
"My life is an ongoing medical adventure"
 


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 6/30/2009 10:27 AM (GMT -6)   
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!

Carol

Remicade - will have my 29th infusion on July 8
Vitamin B-12/Biotin, Probiotics, Vitamin D-3 (2000 IU)
 
Co-Moderator for the UC Forum
 
 


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 6/30/2009 11:30 AM (GMT -6)   
Good luck with the Remi- it and for that matter Humira, are certainly amazing for many. They certainly have suppressed my UC somewhat, though not enough to justify even the relatively minor side effects in my case: swelling of lips, mild joint pains, and fatigue, which still suggest to me that it would be wise to get off them long term, in my case, even if they work, because who knows what this represents as tip of the iceberg.

My thinking in avoiding surgery is not so much the "what if there is a cure" belief- as I certainly don't expect to see a true cure in my lifetime (albeit more and more drugs which means more and more chance that one will work and keep working) - as simply avoiding and pushing off to later in life surgery and it's potential to start a whole new nightmare. Only 1 in 300 Americans have IBD- yet I have it. Less than 10% of UC patients are supposed to be allergic/react adversely to 5ASA drugs and yet I do. So I don't take any comfort from the idea that "only" 5 or 10% of j-pouch surgeries end up being a new nightmare, or that "only" 7% or so of positively confirmed UC diagnoses end up being Crohn's after all when the colon is removed... I can easily see the stats being meaningless. I am definitely not knocking the courage and admirable decisiveness of anyone taking the plunge, but personally I want to exhaust all compelling (to me) possibilities before getting cut open. I am pretty sure that I will be very solid to get surgery if my current attempt with human whipworms gets nowhere. One can get into a ten plus year remission sometimes once one starts so if something works, it may buy me another 10+ years before surgery.


Pancolitis >20 years, allergic to all 5ASAs
(To pharma: enough already with the umpteen variants of Asacol!)
Tried everything under the sun (natural and alternative), low carb SCD
Some partial success with TSO but  too expensive to keep up 
Remicade Humira, lots of probiotics, entocort, tapering increasing pred again,
homemade fecal infusions, maybe surgery this year soon
 
 

Post Edited (Probiotic) : 6/30/2009 11:39:20 AM (GMT-6)

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