Dr. scared me today mentioning surgery

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Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 1/14/2008 8:16 AM (GMT -7)   
went in to see how I am doing on the azathioprine, everything going well so far, even though he and I both think I still have some inflammation b/c I still have stringy poo though almost fully formed and no blood, no dirreah and minor cramping when I have to go. 
 
Will be going for a colonoscopy in April to see how my colon is doing (last one was two years ago).  So I was talking to him about the prednisone and how it took so long for it work for me and he thought I might have some steriod dependency and said well maybe you might need surgery if you are and the imuran doesn't work and then also mentioned going to remicade if when I taper off the pred I have problems.  Then starts talking about fertility problems if I have the surgery and I was like, NO, NO surgery, I will not even consider it at this point.  I'll go back to 5ASA's and try those first.
 
Oh yeah and I am having an ultrasound next week to check my gall bladder.  ***!  I hate all this, I just want to be well.........I'm so tired of all this and scared and just want to cry.  I think I am going to go to therapy, it is just so much to deal with.  I really want to be well and to be able to have children, to think that I might not be able to is scary.
Beth, 32
Major Flare Sept/Oct 07 ~ working on remission almost there
UC Diagnosed March 2000 (30 cenitmeters)
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60/40mg alt days 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Potassium 600mg 2xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5697
   Posted 1/14/2008 8:22 AM (GMT -7)   
It sounds as if you have a great GI. Prednisone dependency is a reason for surgery. I am not suggesting you are at that point yet but your GI wants you to know if you are pred dependent then you need to consider surgery. You still have other meds to try so try and take a deep breath and think positively.

In my opinion, GIs that are frank and honest with their paitients rate far higher than GIs that would allow their patients to remain on prednisone long term. Of course it's always your choice but the long term risks of pred use far outweigh surgery.

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
 


kb5
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Date Joined Jan 2007
Total Posts : 1015
   Posted 1/14/2008 8:26 AM (GMT -7)   
Oh beth I'm so sorry your Gi scared you. I agree with you . We have just started talking about kids and I'm afraid of needing surgery before that can happen. My Gi was really optomistic about remicade and having kids. So many have had good results with remicade.

How is the taper of pred going? It can be so hard. Are you ok with a very slow taper? Have you tried steroid enemas?

Try to keep you head up, therapy is a great idea. It has helped me so much in the past and if I could afford it I would be right back in it.

This too shall pass and I'm sure we both will have happy, healthy babies. Good luck!
Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, 15 mg pred, down to 10 mg 1/11/08!
75mg Imuran starting 8/23/07---bumped to 100mg 10/8/07--bumped to 125 11/14/07...
Taken off of Imuran temporarily 1/11/08
Prontonix once daily for acid reflux, zofran twice daily for nausea


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 1/14/2008 8:34 AM (GMT -7)   
thank for your responses, it was just a shock for me to hear, so unexpected....

No taper on the pred yet, it's helping my kidney disease so I have to stay on it a while longer until my protein leakage reaches a certain range.

Yeah, I am going to be getting ready for the kid phase as soon as I have the green light health wise I am gonna try to get knocked up!

when are you going to go on the remicade?
Beth, 32
Major Flare Sept/Oct 07 ~ working on remission almost there
UC Diagnosed March 2000 (30 cenitmeters)
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60/40mg alt days 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Potassium 600mg 2xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


expecting226
Regular Member


Date Joined Jul 2007
Total Posts : 402
   Posted 1/14/2008 8:37 AM (GMT -7)   
Beth -

I wouldn't jump the gun on the surgery decision as it relates to fertility. Many, many women have had healthy babies with ostomies. I have two friends with j-pouches and both have had no problems conceiving, healthy pregnancies, and healthy babies. In fact, they both conceived much faster than I did, and I still have my colon! If you look at the forums on www.j-pouch.org, you will see many women discussing their fertility, pregnancy and delivery experiences there. You can also hear those stories on the Ostomy forum here at Healing Well.

I am certainly not an expert, but I am hoping this will give you something positive to look at if in fact it turns out that surgery is your best option.
Hang in there!
Current Medications:
- Asacol (4 pills, 3x per day)
- Rowasa (1 enema daily, as needed)
- Folic Acid (1 mg, 1x per day)
- Calcium (600 mg, 2x per day)
- Prenatal Vitamin (1x per day)
- Iron (2x per day)


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 1/14/2008 8:49 AM (GMT -7)   
Berth, My Gi wants to try imuran again after we get some test results back. He didn't sound to hopeful though. If that doesn't work or if while i'm tapering the pred symptoms come back (i am definitly steroid dependent) I will go immediatly on remicade. So it could be a week or a month. My husband and I are hoping that the imuran will work (trying to keep positive, my husband is fantastic for that). We are going to start trying as soon as I lose some of this pred weight (my rule, not his, I can't imagin putting baby weight on top of this. I would never lose it all!) So hopefully by this fall we can start trying.

Have you decided to use a high risk OB or general ob? We are looking into this now. Something to keep me from going crazy while waiting for test results.
Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, 15 mg pred, down to 10 mg 1/11/08!
75mg Imuran starting 8/23/07---bumped to 100mg 10/8/07--bumped to 125 11/14/07...
Taken off of Imuran temporarily 1/11/08
Prontonix once daily for acid reflux, zofran twice daily for nausea


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 1/14/2008 8:51 AM (GMT -7)   
thank you that is good to hear expecting. I'm just shocked, I really never thought I would have to think about surgery. I hope i'll be ok w/just the azathioprine. This is just really hard to even process in my head right now.
Beth, 32
Major Flare Sept/Oct 07 ~ working on remission almost there
UC Diagnosed March 2000 (30 cenitmeters)
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60/40mg alt days 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Potassium 600mg 2xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


mudua
Regular Member


Date Joined Apr 2007
Total Posts : 459
   Posted 1/14/2008 10:23 AM (GMT -7)   
Hi Beth75

My doctor also told that I should have surgery after no medication could stop my bleeding. I did Sheldon's Vitamin E enema and my bleeding stopped the very next day even though I continued to have other UC symptoms. I think that I am in remission now after doing the cimmamon therapy. Read my thread on the cinnamon therapy.

UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 1/14/2008 10:45 AM (GMT -7)   
HI Beth - I am sort-of in a somewhat similar position. Young, haven't had kids yet, want kids, on Imuran, steroid dependant. We just saw a high-risk OBGYN last week, so here is some stuff I learned. But, please remember that the jury seems to be out on a lot of these issues, so you will hear different things at different doctors. we went to the high-risk OBGYN clinic at UNC-CHapel Hill, which has a very good GI department, so I feel pretty comfortable with what I was told, but again, you could definitely find doctors who would disagree.
1. ok to be on imuran during pregnancy. obviously, not ideal, and is good to reduce dose if possible, but if not, it's ok.
2. not ok to be on remicade during pregnancy. period.
3. surgery does not impact fertility in too major a way. about 15% of women have problems conceiving in first 6 months of trying in a standard population. about 45% of women have problems if they have no colon. so, percentage goes up, but definitely totally doable to get pregnant with no colon.

as for your health at present, I am sort-of in the same place as you, and the OBGYN said that if I stay like this, and there is no blood, then it would be totally fine to conceive. It sounds to me like you are actually doing pretty well on the Imuran. I am unclear why you would get off it, as remicade is a big step from there and if you are feeling pretty good, why switch?

in any case, I totally agree with SueBear that you should take a deep breath and remember that you have other options. Ialso agree that an honest GI, who lays out all your options, is a good doctor. remember: he wasn't saying you need surgery, he was just saying it could be an option. personally, I find comfort in knowing that we do alwauys have the option to actually get rid of our disease via surgery. better to have that choice, than not, even if you never use it.
ok, that's my two cents.
29/Female/NC
Pancolitis dx 3/07
12 Asacol/day
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, a probiotic.


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 1/14/2008 12:02 PM (GMT -7)   
thank UCinNC! I'm pretty sure i'll be on imuran during my pregnancy, I have discussed w/GI. I guess, maybe I am in denial still. GI was thinking if the imuran alone wont help me and if I am steriod dependant then, I would need to look at remicade and possibly surgery. I think I am tolerating it well and hope when I taper off the pred that I will be ok on just the imuran
Beth, 32
Major Flare Sept/Oct 07 ~ working on remission almost there
UC Diagnosed March 2000 (30 cenitmeters)
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60/40mg alt days 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Potassium 600mg 2xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


marty1976
Veteran Member


Date Joined Nov 2005
Total Posts : 2045
   Posted 1/14/2008 2:54 PM (GMT -7)   
I hope things improve real soon and that you don't need surgery. It is scary but i hope that with time you will improve.
Best wishes to you
Marty
                                     keep the faith 

         asacol/proctifoam/Zoton (lansoprazole)/propranalol



        http://www.myspace.com/martybuzz1<FONT]


AlabamaBabs
Regular Member


Date Joined Jul 2007
Total Posts : 172
   Posted 1/14/2008 6:54 PM (GMT -7)   
Beth,

I just wanted to send some ((((((((((((HUGS)))))))))))))) your way. I agree with fatboyslim--"keep the faith!"
AlabamaBabs
Pancolitis diagnosed 5/07 
4 Lialda/day since 8/01/07
Started 40 mg. Prednisone on 9/16/07 and DONE as of 11/26/07!

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