Got told surgery is my last option

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sparkle20x
New Member


Date Joined Dec 2008
Total Posts : 15
   Posted 5/6/2009 6:01 AM (GMT -6)   
Well...suffered with colitus for only 11 months totally took control of my life,am such a bubbly person always wanting to go out,dance,be with my boyfriend and friends now really scared to go out due to problems related with colitus its horrible!!!!Been admitted into hospital 8 times now,they keep giving me steriods they do not work at all..infact not seen any good effects from any of the medication except painkillers!I got told yesterday surgery is now my only option and as am only 19 am really not looking forward to the colostomy bag although it will be a tempoary one am still very unhappy about having it!has anyone had it ,how did they cope and did it make your life better?
also...what's this cyclosporin ive heard about my consultant has never mentioned that to me before....and is it only available in america????thankyou,charlotte :)

glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 5/6/2009 7:29 AM (GMT -6)   
I'm sorry that you've been having such a tough time.  If I were you, I'd get a second opinion.  Have you had your stools tested for parasites or c.diff?  Maybe you're not responding to typical UC meds because you have something else.  I would see another doctor just to be sure.  Even if you do have UC, sometimes seeing another doctor who will try different combinations of meds can help.  Have you tried 6MP yet?  What about Remicade?
Female, Age 38
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03, Diagnosed with UC 2/03
Current Meds:
Lialda, 6MP
Ferrex Forte
Acidophillus, Sacchromyces Boulardii, Oil of Oregano


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 5/6/2009 7:39 AM (GMT -6)   
What medicines have you tried? I really don't know what country offers what, but... have you tried Remicade? Humira? Those meds sure do help get you into remission. I agree with glamourgirl, you may want to get a second opinion.
27 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)
Taken off Imuran 1/15/09
Only taking Humira.

Can't take Asacol, Allergic to Remicade


sparkle20x
New Member


Date Joined Dec 2008
Total Posts : 15
   Posted 5/6/2009 8:33 AM (GMT -6)   
Medicines i have tried are...
asacol
hydrocotorsine(steriods)
immune supressers
tramadol
fybogel
salofalk enemas
I have never heard of remicade or humira or 6mp what kind of drugs are those....
i really do not want to rush into surgery,but i am in so much pain and go to the toilet about 20/30 times a day i just cannot really do anything....are you 2 just on medication,i got told yesterday that 49%of my colon is effected is that really bad in colitus terms?it is a really really awful illness!

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 5/6/2009 10:26 AM (GMT -6)   
The immune suppressor you were on was probably 6MP or azathriopine. Remicade and Humira are both biologic drugs. In the US, Remicade is approved for UC, but Humira is not yet (it is for Crohn's), but people who fail (doesn't work) or can't take Remicane, Humira is often approved. I'm not sure about other countries.

Honestly, I wouldn't have surgery until I'd tried Remicade. It seems like it really works wonders for a lot of people.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 5/6/2009 10:46 AM (GMT -6)   
I hope you get a chance to try one of the biologics. After a long time with UC, Remicade is working for me better than anything ever did.

I know the prospect of losing your colon is shocking, but you have a long life ahead of you and maybe your life would be better if you ended your struggle with UC now, because it doesn't go away. Surgery is the cure.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; used prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion). 
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ 


AnnaG
Regular Member


Date Joined Apr 2008
Total Posts : 191
   Posted 5/6/2009 11:41 AM (GMT -6)   
They made a new ruling in the UK in january,stating something to the effect that remicade (infliximab) is no longer to be made avialiable to refractory UC patients,on the NHS even in single doses,as there is no enough evidence that uc patients significantly improve for long enough to justify it.I suspect it is more to do with the fact that it is an expensive drug I wish I'd tried it last year when offered it my GI says he can't offer it now bad luck if your in the uk,as their seem to be quite alot of people in the us with uc whoare benefitting from it

seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 5/6/2009 11:46 AM (GMT -6)   
As the US grapples with the cost of insurance and the possibility of some sort of universal coverage, I'm willing to bet comparative-effectiveness studies reduce access to drugs like Remicade, especially for UC.
 
Patients who have had surgery report very high satisfaction rates (>90%), and it eliminates the disease. 

Scrap Girl
Veteran Member


Date Joined Jan 2007
Total Posts : 653
   Posted 5/6/2009 1:11 PM (GMT -6)   
I've had the same thought about Remicade and universal health care. Why in the world would they approve a treatment that costs between $3,000-$10,000 every eight weeks for years and years when you can have your colon removed and be done with those expensive medications. It's not like there isn't an "alternative."

Diagnosed with UC in Feb. 2005
 
Colazal (9 a day)
Folic Acid
Biotin
Calcium
Remicade


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 5/6/2009 2:37 PM (GMT -6)   
My guess that why it's approved despite the cost is because the risks associated with surgery are likely higher.

Honestly, if my insurance company refused to pay for Remicade, a treatment that is approved by the USDA, thereby forcing me to have surgery to treat my condition (this is assuming no other meds control the UC), and I died due to complications from anaesthesia, I hope that my husband could sue the insurance company (and win!).
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 5/6/2009 3:52 PM (GMT -6)   

Under certain circumstances, it just wouldn't be approved any more and your insurance company wouldn't be under any obligation to provide the drug, so that would be a moot point.

I'm sure the numbers on mortality are different, but you assume similar risks every time you are sedated for a colonoscopy, moreso if you opt for proprofol (especially without at least a CRNA present). 

I haven't looked into the numbers recently, but surgery carries something like a <1% chance of mortality and among those numbers are the seriously ill and elderly.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/6/2009 4:40 PM (GMT -6)   
Sparkle-I am older than you (31 ACK!!!) but i still like to go out and party and go dancing and drink and lots of fun stuff! I had surgery in april 2007, i had had UC for 8 years before, and i had tried remicade but it just wasted my time.
I have a perm ileo, and i swear to you that it is not keepign me from doing ANYTHING!!!
I go out every friday night, sometimes to clubs, sometimes just to bars, sometimes just to friends houses. I go swimming, i go to the park with my kid, I even went pudding wrestling!!! All with the bag!
And honestly you wont even know its there after a while. I know you arel ooking into the jpouch but the 6-8 weeks you have the bag wont be bad at all!
Good luck and yay for being healthy soon!

Hobo
Regular Member


Date Joined Jan 2006
Total Posts : 187
   Posted 5/6/2009 8:08 PM (GMT -6)   
My GI had told me that I would need my colon removed. I couldn't get below 15mg of prednisone and I was on Humira.
I found a new GI and and started a gluten free diet. I am now down to 2mg of prednisone and in remission.

I highly recommend getting a second opinion.

Charlotte09
Regular Member


Date Joined Mar 2009
Total Posts : 21
   Posted 5/6/2009 10:10 PM (GMT -6)   

Sorry you are going through this!  I am 36 and was dx'd with uc in 2002, pancolitis.  I was on asacol, imuran, remicade, prednisone and a number of pain meds.  Surgery was always on the horizon for me but one I fought until March.  I had a routine colonoscopy and they found low grade dysplasia (pre-cancer cells).  I met with the surgeon on April 10th and had surgery on April 13th.  I am currently 3 weeks post surgery and feel pretty good.  I have the temporary loop and bag and don't care for it much, I am not used to it and don't want to be, BUT it is only temporary and I have to admit that I don't miss running to the bathroom 15+ times per day, the blood, the pain, fatigue, etc.  I don't have any of it anymore and it is nice.  Plus, I no longer have to worry about colon cancer.  I can't wait for my second surgery which will happen in the next 6 weeks or so.

That being said, I would seek another opinion before agreeing to surgery.  My surgeon told me he has turned people away who have not tried all meds available and it doesn't sound like you have.  You do need to be careful of becoming steroid dependent as steroids can wreck havoc on your body too.  I developed osteopenia from prednisone.

 

Anyway - good luck!


Charlotte
 
UC diagnosed in 2002
Pancolitis
Currently taking 400mg Asacol, 9 per day; 100mg of Imuran per day; Remicade every 7 weeks
 
Mommy of twins
Previously a Promotions Marketing Manager
Husband in law school.


sparkle20x
New Member


Date Joined Dec 2008
Total Posts : 15
   Posted 5/8/2009 11:44 AM (GMT -6)   

Thankyou all for your replies :)

I recently asked my consultant about remicade and said that it had been more proven for chrons and not colitus and there is more risks with it and apparently surgeons are reluctant to operate once being on that drug!The thing is with colitus not everything is simple and am finding a lot of people are trying different things to me,but i just cannot see any light until i have surgery because i wouldnt say i had a good quality of life now,and now had another 2 weeks of sick at work,as i work in fashion it's not good to be running to the toilet all the time especially if you are with a customer then have to run off!I have been looking at cleveland clinic in florida and it sounds really good...anyone have any views????


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 5/8/2009 12:10 PM (GMT -6)   
For information/recommendations of the CC of Florida post a note at www.j-pouch.org and ask if anyone had surgery there. I am sure you will get responses.

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


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/8/2009 6:47 PM (GMT -6)   
i dont know about surgeons not wanting to do surgery after remicade. I had surgery after it, alot of people do.
It is a dangerous drug, esp long term, but it works for some people, and it puts them in complete remission.
But for others it doesnt. and they have surgery and it cures them

The Cleveland Clinics are supposed to be the best to go to.
Good luck!

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 5/9/2009 4:23 PM (GMT -6)   
My doc said if the Remicade didn't work, I could have surgery. I don't know why your doc thinks it would be a problem. She also has many UC patients doing very well on Remicade, so your consultant needs to get his/her nose out of the journals and ask around!
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; used prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion). 
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/9/2009 5:06 PM (GMT -6)   
it just occured to me that the dr may be thinking that cause remicade lowers your immune system you may be more likely to get an infection during surgery.

Liza D
Regular Member


Date Joined Apr 2009
Total Posts : 166
   Posted 5/9/2009 8:06 PM (GMT -6)   
Sometimes I would give my right arm to loose my colon. I'll have to wait until I'm not pregnant but I even asked if we could do it during pregnancy. I am in too much pain and I would give up a few weeks with a bag for a life on not being in the bathroom every 15 mins.

I went through the same thing. I used to be so outgoing and Hilarious, if I do say so myself... But now, all I talk about is pooh, pain and foods I want to eat sooooo badly!

Good luck. I hope it goes well.
UC (Pancolitis... 90%!) December 2001
Arthritis (2003)
Upper GI Ulcer (2006)
Osteopenia (2008)
Depression/Anxiety (2002)

Meds:Bump up every couple years... You name it, I've used it! Sulfasalizine, Asacol, Rowasas, Pentasa,
Remicade, 6mps... And now it looks like the once daily Lialda taken twice a day isn't enough...
Here comes Humera.

Soon to be mom- hopefully! As long as this flare dosen't take me out...


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/9/2009 9:12 PM (GMT -6)   
LizaD dont look at it as "giving up a few weeks with a bag" i swear you will not be losing any part of your life while you have the bag!

sparkle20x
New Member


Date Joined Dec 2008
Total Posts : 15
   Posted 5/10/2009 2:58 PM (GMT -6)   
Is there anyt type of surgery that is safe where you have one operation instead of 2/3 i just know its summer coming up and i know sounds vane really do not want a colostomy bag,althought i have come to terms with it now!Are they easy to deal with aswell and do they cause any pain when having bowel movements....?????
There is so much on these sites saying people are still living life in pain and irregular bowel movements,it's really awful you would think there would be some such thing as a "miracle" drug for this illness,but there just isn't!Am so poorly atm am scared i might have to have emergency surgery i currently have been on no medication for a week as am constantly sick so they dont get into my system,i think that this is making me worse...anyone got any ideas what to do as i know going down the a and e route is awful and you have 2 wait on trolleys for days just to get a bed on a ward! :(

Iflyfish
Regular Member


Date Joined Mar 2009
Total Posts : 45
   Posted 5/10/2009 4:21 PM (GMT -6)   
 Sparkle -
 As you check with your GI doc on alternatives.  A new drug for Chrons patients has been recently approved for U/C.  Check on Cimzia.  www.cimzia.com 
 
As this disease effects us all differently -
I'd check a few more drugs before surgery.  I was very healthy on Immuran for several years straight - with zero flair-ups.  I'm was very active - and happy.  It has stopped working recently - and I am weening off the Immuron and onto a new Immune Surpressant, Cimzia, which is a monthly injection you can give yourself.
 
Just a suggestion for research - best of luck.
:-)
Daily: 100mg Immuron, 6x400mg Asacol.
Monthly: inject 400ml CIMZIA
5-lac Probiotic, Starting VSL-3, Spinach and Sunflowerseed Diet,
Omega Oil, Flaxseed Oil, Oil of Oregano, daily vitamins, strictly no alcohol.
Prayer.


Charlotte09
Regular Member


Date Joined Mar 2009
Total Posts : 21
   Posted 5/10/2009 5:40 PM (GMT -6)   
Hi Sparkle,
I know surgery is scary, believe me, I just had step one of two a month ago. 
 
The bag doesn't hurt really, it pulls on the skin and can cause skin irritation and no, it doesn't hurt when you have a bm - you aren't having a traditional bm anyway.
I will be honest, i hate the bag and can't wait to get rid of it, but this is the best I have felt in 7 years physically.  I am not sick anymore, not running to the bathroom, no more drugs, no more 15+bm's per day and no extreme fatigue.  I had to have surgery due to pre-cancer cells found but struggled with uc for 7 years and was on every drug available but never achieved full remission
 
Good luck!
Charlotte
 
UC diagnosed in 2002
Pancolitis
Currently taking 400mg Asacol, 9 per day; 100mg of Imuran per day; Remicade every 7 weeks
 
Mommy of twins
Previously a Promotions Marketing Manager
Husband in law school.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/10/2009 9:37 PM (GMT -6)   
the bag is very easy to deal with, like 2 or 3 minutes to empty it.  and about 10 minutes to change it every 4 or 5 days.  It just is kind of there, doesn't show, doesn't smell, just hangs out on your side, lol.
You won't feel a BM sometimes you might feel gas tickle at your side, its kind of hard to explain that, but it doesnt hurt at all.
The pulling feeling that Charlotte is talking about goes away after a few months, and even then wont be as bad if you dont let the bag get that full and if you keep the bag tucked up instead of falling loosely.  the skin irriation will also lessen as you get the hang of it!
Either way you go, jpouch or perm ileo, with that colon out you will feel better!
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