Doc Recommends Surgery

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diaper man
Regular Member


Date Joined May 2009
Total Posts : 122
   Posted 7/21/2009 8:47 AM (GMT -6)   
Hello All
 
My doc is pretty much recommending surgery. I have failed all the medicines taken so far.  I am allergic to the 5sa's, taken Remicade and Humira to not avail. The only medicine that I have not taken are the other biologics and Imuran.  My doc would probably prescribe Imuran  if asked but at this point I am leaning toward surgery.  Does anybody have any thoughts whether to give it another shot at the other biologics (Cimzia) or Imuran? I guess what I am asking has anybody failed Remicade or Humira and had success on Imuran?
 
Thanks replies really appreciated.
 
Steve
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. 


Capsid
Regular Member


Date Joined May 2004
Total Posts : 300
   Posted 7/21/2009 8:58 AM (GMT -6)   
I certainly think Imuran is worth a go, it worked for me. To really get me under control though I went on a course of cyclosporin whilst taking the Imuran which takes 3 months to become fully effective.
Mark
 
200mg/day azathioprine


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16712
   Posted 7/21/2009 9:15 AM (GMT -6)   
I can't say because I am lucky to be helped by 5ASAs but I can say that I think the quality of your life will be greatly improved with surgery. I would be willing to try anything before resorting to surgery but I wouldn't give it too much time to work. If you don't see quick improvement, move forward and take the step. I know it's a big procedure with a lot of time and healing involved but for some of us, it's by far the best option. I hope you find a treatment that helps or you have surgery with a easy, fast recovery.
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)
Back on Canasa every other night + Asacol (9/day) + Probiotics + Iron
Reducing to 6 Asacol/day + Canasa + Probiotics + Iron - So far so good!!! -SPOKE TOO SOON! Back to 9/day...


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/21/2009 9:30 AM (GMT -6)   
I went off immuran before i went on remicade, and while i was on remicade i was on 6mp also, but they didnt work for long.
It can take up to six months to start seeing the full effects of immuran, although you should get them by 3 months.
Although if you havent been on immuran i had some nasty side effects, that was just my personal experince though.
Anyway if you think you want to try the immuran go ahead but also schedule a consult with a surgeon. It took me about 3 months from the time i asked to see one and the time i actually had surgery. And you could find out more from the surgeon.
If you have questions about what an ileo or jpouch is like come over to the ostomies board and we can help you!
But to me the surgery was the best thing ever!!!
good luck!

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 7/21/2009 10:50 AM (GMT -6)   
Since you are undecided it might be best to start the Imuran and also get a consultation with a CR surgeon. That way you have time to think over your decision and also give time for the Imuran to kick-in. It's also best to go into surgery with as much knowledge as you can gather on the procedure and recovery. There's no easy answer; all of us faced with the surgery decision struggled to make it.

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


LuckyLindy
Regular Member


Date Joined Feb 2009
Total Posts : 226
   Posted 7/21/2009 2:26 PM (GMT -6)   
I was in a similar situation 5 1/2 years ago ... 5ASAs and Prednisone didn't work, insurance wouldn't pay for Remicade, some other experimental drug did nothing (I no longer remember the drug, I was pretty out of it at the time due to blood loss). I was so anemic that I couldn't go up and down stairs (and developed heart problems as a result), etc. Doctor wanted me to have my colon removed, but since they thought the ulcerations might extend past my colon, I was worried that the surgery wouldn't be a cure (they were uncertain if it was Crohn's, UC, or both ... insurance wouldn't cover the pill cam to determine if ulcers were much above my colon).

As a last resort, I tried VERY restrictive diet modification. Basically I went on an all-natural induction-phase Atkins diet ... no sugars, starches, etc. Kind of like SCD, but without the fruit sugars, and very few if any nuts. This isn't for everyone, but for me it worked wonders, and I know it has for others as well. The key (again, for me) was to keep carbs under 20g per day (meats, eggs, veggies are my staples). I've heard other people say "oh, I've tried that ... but I also ate fruit, and it didn't work for me", which is the same as saying they didn't try the diet.

I've been completely drug free for 5 1/2 years, and only have problems if I 'cheat' on my diet.

Jen O
Regular Member


Date Joined May 2009
Total Posts : 136
   Posted 7/21/2009 7:08 PM (GMT -6)   
I was on Remicade from early October 2008 until May 2009. (I think that's about 7 months). The Remicade got me out of my first UC flare when I got my diagnosis. According to the GI that I was going to at that time, "Remicade saved your colon, Jen." Well, in May, I started my second flare. He didn't give me any options but to see the colorectal surgeon. His next quoteworthy statement was "Jen, there IS a cure for your disease and it is a total colectomy." Well, I really haven't been diagnosed for long, and I knew that there were other medical options that I wanted to try first. Needless to say, I have a new GI doc, one who specializes in IBD.

I have now been on Azathioprine (Imuran) for exactly 4 weeks. I finished up with my Prednisone taper one week ago. I began taking Apriso about 6 weeks ago. I guess I am in remission. I don't have any blood, mucus, urgency, etc I DO have BMs more than once per day, but, hey, I did before my UC diagnosis, too. I think part of the reason for that is I'm not patient and I can't sit on the pot for very long, I have to get up and do something.

Good luck with your decision, but I'm willing to try just about anything before I have a colectomy / J-pouch. (At least that's where I"m at today!)

Jen
Age 34, Diagnosed with UC September 2008
Current Meds:
Prednisone currently on 5 mgs, will quit on Wednesday 7/15/2009!
Started Azathioprine 100 mgs 6/22/2009 and Apriso 4 tabs daily 6/11/2009
Biotin 5 mg
Vitamin D 2,000 IU per day
Calcium 1500 mg per day
Flaxseed Oil 2000 mg per day
Multivitamin
Also tried: Remicade, Asacol, Rowasa, Cantasa


diaper man
Regular Member


Date Joined May 2009
Total Posts : 122
   Posted 7/21/2009 7:44 PM (GMT -6)   
Thanks everybody for the replies. I emailed my doc GI today about possibly taking Imuran but have not heard anything. He is pretty good and we actually correspond almost biweekly through email. I am leaning more toward surgery but like Suebear said, do some research. I am more concerned with being out of work than the actual surgery if that make since. I guess I still got to pay bills.

Keep the replies coming

Thanks

Steve
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. 


AmyWaffle
Regular Member


Date Joined Jun 2009
Total Posts : 173
   Posted 7/22/2009 12:13 PM (GMT -6)   
hey Steve--we started remicade almost the same day (6/22/09) and my doctor is still hopeful it will work. (so far not much effect). We are waiting to see what third dose on august 3rd does. Has yours given up on it after two doses? Or did you have a reaction or something?
Just wondering!
Amy
UC since 1996 (age 20)
Mommy of 2 sweet little girls.
My life is one big flare.

Asacol, Azathioprine, Prednisone, Rowasa
First Remicade 6/22/09


diaper man
Regular Member


Date Joined May 2009
Total Posts : 122
   Posted 7/22/2009 12:42 PM (GMT -6)   
Amy

My doc said that I should have felt some effect by at least the 4th week. Yesterday was the end of the 4th week and I am about the same with no help. But I read a few other post that they did not get better until 3 or 4 infusions so who knows. I may try one more infusion (3rd) to see what happens. I wish you luck and hope you get a good reaction soon.

Steve
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. 


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 7/22/2009 2:06 PM (GMT -6)   
Imuran did not help me much but Cellcept is keeping me in remission and is helping my kidneys.  Worth a shot to ask about it.
Beth, 33 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07.  Flare May 08 (from aspirin?).
UC dx'd 03/00 Proctosigmoiditis; Pancolitis since 09/07
Can't take anything b/c I am on Cellcept for my kidneys (can possibly help UC) Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07. Close to remission since 9/08.
Cellcept 1000mg 2xday, Prednisone 7.5mg 1xday, Lipitor 40mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs (sulfasalazine, asacol).  Do you have edema? If so, check your blood protien level!
 


Blue220
Regular Member


Date Joined May 2008
Total Posts : 191
   Posted 7/22/2009 2:19 PM (GMT -6)   
I've been on Imuran (azathioprine) for 6 months. I'm doing good. I have always had a mini flare around the time of my period, and since the Imuran kicked in, it has stopped. (Not like that matters to you, but NOTHING besides lots of steroids has ever helped that for me.)

I wish you luck with the Imuran if that's what you decide to do. The other suggestions so far on here are good.
22 years old

Diagnosed with moderate/severe UC June 2007, I've had it since December 2006.

Taking Lialda 3x a day<---NOT ANYMORE. I got pancreatitis from them (?).
I stopped taking Lialda 8-19-08. Ugh!
All I take now is just my 3 Entocort, and 1 iron pill in the afternoon.

NOW back on Lialda as of 8-30-08, not the cause of pancreatitis.
Going in for an endoscopic ultrasound on 9-19-08 to check things out.
Still on Entocort and iron. Yay...

Haven't been on here in a while (finally graduated college).
Update as of 5/26/09 - Now taking Imuran 100mg/day.
Taking Caltrate, iron, A, D, and B12. I still take 2 Lialda a day.
At least I'm off the Entocort.


Rio in Maryland
Veteran Member


Date Joined Nov 2007
Total Posts : 891
   Posted 7/22/2009 2:47 PM (GMT -6)   
Also, before you decide on having surgery maybe it would be good to get a second opinion.

When I was in England, the GI specialist there strongly recommended having surgery and even made me meet with the surgeon to discuss the procedure. Two weeks after that I was in India and decided to have a consultation with one of the top specialists there and he laughed off the symptoms, and felt like there was definitely no need for surgery.

In my case, before I consider surgery I would rather exhaust all the other options out there.

My main concern with surgery is that even after surgery a high number of people seem to have complications and/or still have several urgent BMs a day. But, that might still be better than how they were before surgery; so whatever it is, it's a tough decision to make, so good luck with it.
Rio, 33 year old male. Diagnosed with UC in 2006
100 mg Azathioprine (stopped), 4800 mg Asacol
VSL#3 & Primadophilus Bifidus, Metamucil
Vitamin E enema or Asacol suppository occasionally

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