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Posted 10/11/2012 5:33 PM (GMT 0)
Went to teh GI today. For the first time in 15 years he was pushing me hard to get my colon removed and egt a jpouch. I'm highly discouraged with this news. I actually thought I might be on the road to remission and good things as I've been feeling better and I think the VSL was starting to work..... I don;t know if I am mentally or emotionally ready for this yet. I'm so healthy in so many other ways and the idea of the surgery and the puch scare the crap (no pun intended) out of me, plus I wonder things like how my wwife will look at me, how my kids will see me after something like that. Left house this monring optimistic, now feeling at an all time low with my disease......
Posted 10/11/2012 5:42 PM (GMT 0)
Leaving the details of surgery aside, I would imagine that your family will love you and stand by you regardless of whether you have surgery or not. I know I would do that for any family member and I would be surprised if they didn't do the same for me.
Posted 10/11/2012 5:53 PM (GMT 0)
Since you are feeling ok, why don't you continue the VSL for a bit longer?
Posted 10/11/2012 6:00 PM (GMT 0)
I think taht is just a natural feeling that anyone would have. It may be hard for some to understand, but I am pretty sure your family would stand by you. If your wife has stuck beside you through your flares, and see's what issues this disease brings, then I am sure she would want what's best for you, and would be happy for you regardless of what you do.

Post Edited (wolfehound22) : 10/11/2012 12:03:42 PM (GMT-6)

Posted 10/11/2012 6:05 PM (GMT 0)
I'm confused. After 15 years and you feeling better, what reasons did the doctor give for pushing so hard for surgery? Do you get regular colonoscopies to check for cancer? Just remember, this is your life, not your doctors. You are the one who has to live the rest of your life without your colon, not your doctor. This is not a thing where your doctor is the boss and you do what the doctor says. You are the boss. You can listen to your doctor's advice but in the end this is your decision and if you don't want to do it you shouldn't have to. I'm still curious as to what happened to make him suddenly push for this.
Posted 10/11/2012 8:44 PM (GMT 0)
Unless there is new cancer risk, as long as you are feeling better, I would wait it out. There willbe several new treatments over the next 3-4 years.
Posted 10/11/2012 9:19 PM (GMT 0)
Has something shown upon your colonoscopy you haven't mentioned in your post? As other responders have said unless you have a cancer threat you are in no rush for colon removal.

How you feel as far as symptoms is irrelevant to doctors, something that many people don't understand. Doctors make decisions based on what they see on scopes and biopsies. Has your GI seen something new?

If he/she cannot give you physical evidence for colon removal then you need a new/better doctor.
If you do indeed have pre-cancerous polyps you need more information, perhaps from a 2nd source, to make your decision. Quite a few people on this forum have had UC longer than you without colon removal but each case is different.

Let us know what you find out.
Posted 10/11/2012 9:47 PM (GMT 0)
I have had surgery and I'm confused too. Are steroids keeping you in remission? Do you have a ton of polyps? Do you have a history of pre-cancerous polyps? Why does your GI specifically think you need surgery?

The reasons I see for getting your colon out are to 1) improve your quality of life, 2) prevent an probably bad health problem (cancer potential, too many polyps to detect cancer, perforation, or 3) the drugs that are keeping you in remission are doing horrible things to your body (this is open to interpretation with some drugs, but steroids are awful).

If you feel pretty good and if your quality life is good (make sure you are interpreting this accurately as IBD'ers learn to "adapt") then I don't see from your post why you need your colon out.

And your family will love you no matter what. If your GI is leaning toward sending you to someone to make a jpouch (this is internal), then nobody should look at you any differently once everything is said and done. Even with an external ostomy, nobody needs to know that you have it.
Posted 10/11/2012 10:00 PM (GMT 0)

ActiveUCer said...
Even with an external ostomy, nobody needs to know that you have it.

I can tell if someone has a bag ....I have an eagle eye now for that. The dude at the remi infusion has one, I spotted it right away. But...you need to know what you are looking for.

If you don't know what it is, you'll never notice.
Posted 10/11/2012 10:10 PM (GMT 0)
I do need steroids on a more frequent basis to keep me in remission and the biologics have been failing me and we've tried everything else. His reasons are that he is starting to become very concerned what the prednisone is doing to me that combined with the high degree of inflammation throughout my colon due to me pancolitis from my last scope. I think he is a good doc but he is in the process of sending me to MAYO in Rochester, MN so I can get a second opinion. So we are covering our bases here. We are going to continue to give CIMIZIA a try and the VSL#3DS for another few months. I will go to MAYO in between then and we have an appointment toward the end of December. At that point we will re-evaluate, if I am off the prednisone and being controlled with CIMZIA and VSL#3 then we'll scrap the surgery idea, if I am not and the MAYO docs concur then I am not sure what I will choose to do but it's becoming tougher to live like this lately (without the pred that is) I will say that.
Posted 10/11/2012 10:22 PM (GMT 0)
They do have a point about the pred. It will destroy your body. Everyone should opt for surgery before being on pred long term. You've got to find a treatment different than long term pred. Hopefully what you are doing will work.
Posted 10/11/2012 10:44 PM (GMT 0)
Ah, that sounds similar to me but less "severe" in a way - I couldn't go below 30 megs steroids without accidents and Remicade was quickly loosing any effectiveness. I jumped on the surgery bandwagon pretty quickly though (after 1.5 months of thought). I can see where your GI is coming from. He/she might just be mentally prepping you in case you get worse.

I think it's great that you are getting a second opinion and I hope Cimzia works for you! If Cimzia works, awesome. If your second opinion tells you surgery, then you know that you exhausted alot of options.
Posted 10/11/2012 11:11 PM (GMT 0)
How have you been getting steriods if you haven't been tot he GI in 15 years? I personally would prefer a j-pouch over long-term steroid use but it's a personal decision you have to make with your family. I am sure they would be very understanding and help you along the way but it's a very serious surgery with a long healing time. I wish you the best in whatever you decide. Get off those steroids!!
Posted 10/11/2012 11:24 PM (GMT 0)
butte1,

I am so sorry about the predicament the doc has put you in.

But I think it's wise for you to get a second opinion from Mayo clinic.

How long have you been doing the VSL #3DS?

How many sachets per day?

Have you tried any diet modification?

Any supplements?

 

Posted 10/11/2012 11:37 PM (GMT 0)

butte1 said...
Went to teh GI today. For the first time in 15 years he was pushing me hard to get my colon removed and egt a jpouch. I'm highly discouraged with this news. I actually thought I might be on the road to remission and good things as I've been feeling better and I think the VSL was starting to work..... I don;t know if I am mentally or emotionally ready for this yet. I'm so healthy in so many other ways and the idea of the surgery and the puch scare the crap (no pun intended) out of me, plus I wonder things like how my wwife will look at me, how my kids will see me after something like that. Left house this monring optimistic, now feeling at an all time low with my disease......

Why on earth would your doctor push you into surgery when you are feeling well? What are your symptoms like?
Posted 10/12/2012 1:23 AM (GMT 0)
OK thanks for the explanation. Long-term steroids are def not a good thing for your body. Good luck with Mayo. I've been to the rock/hard place and got lucky with diet mod. and VSL#3. It's lasted over 2 years now. I hope your UC can get off the roids and into remission.
Posted 10/12/2012 1:44 AM (GMT 0)
My father had it done and I look at him no differently. I am actually quite proud of him and have nothing but admiration for him. He has handled it very well.

I understand your fear because the thought of having it done scares the crap out of me too.

Best of luck to you with whatever you decide.
Posted 10/12/2012 1:48 AM (GMT 0)
Hey I can understand how you feel.

There are lots of testimonials from people here happy they did the surgery. OTOH if you choose not to you can always go back and have done in a year or 5 years.

It is a personal decision that you alone make not your doctor. I just want to give science another decade because I think they are going to find a way to short-circuit the cycle somehow someway. When they do I need to still have mine.

But you need to do what your going to feel good about walking out the door each morning year after year.

Good luck with your choice.
Posted 10/12/2012 4:21 PM (GMT 0)

notsosicklygirl said...
How have you been getting steriods if you haven't been tot he GI in 15 years? I personally would prefer a j-pouch over long-term steroid use but it's a personal decision you have to make with your family. I am sure they would be very understanding and help you along the way but it's a very serious surgery with a long healing time. I wish you the best in whatever you decide. Get off those steroids!!

I think you misunderstood or misread my post. I have had UC for 15 years, I see my GI several times per year and always have over that time period. I've had 8+ scopes, countless other tests etc.... over that time period as well. And yes I want off the pred asap either way

Posted 10/12/2012 8:34 PM (GMT 0)
yes, sorry, I did misread. I think surgery is a good option if you've been suffering all of these years. I am not sure which medical options you've tried but my experience with prednisone makes me feel like it's the worst thing for a person. I tried VSL without any benefit... I've had some success with 6mp and I am thankful for that. Hopefully you find a treatment that works for you and you don't have to have surgery until you're ready.
Posted 10/18/2012 8:33 PM (GMT 0)
So regardless of what I end up doing surgery wise I really need to get off the prednisone. It's starting to eff me up. My normal BP is 110/70 and the last two have been around 126/94 and we did labs the other day and my glucose was up to 145, which I can come back from if I start weening but if I wasnt' on pred the docs would be thinking I was diabetic and my glucose is normally around 50. So yea, effing pred effing pred effing pred, it makes my symptoms better while effing up the rest of my body..... mad
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