Closer and Closer to the decision

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jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 1/27/2009 7:52 PM (GMT -6)   
Hi guys-
I haven't posted a lot lately but have been reading carefully all of the posts that deal with 6mp and surgery.

At my doctor's appt. today, doctor mentioned upping 6mp to 125 then 150. He feels that if the meds don't work in a month then it is definitely time to consult with a surgeon.

I was really hoping and praying that this would be it... that 6mp would work but so far NO good.

As the moment gets closer the more nervous I get... Yes, I am tired of the pred and the Colazal, and the 6mp, and all of the crappy side effects... but yet really scared.

I have missed several days of work because I have been feeling horribly. I was trying to taper pred- down to 15mg, but I will have to back up to 20mg-

I have been to jpouch.org quite a bit and feel that I know what the surgery entails in theory, but is there really any preparation for this???

cry
Jackie, 43
Pancolitis, DX October 06

Lexapro, colazal 3x3, Synthroid, Protonix, 6MP (75 mg)
Prednisone 20mg, Iron, Vitamin D
Surgery almost certain


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 1/27/2009 9:13 PM (GMT -6)   
Jackie,
 
One of the best things I did on the route to choose surgery was meet a jpoucher face to face.  It wasn't planned, I was in the hospital with a severe flare and on 9 days of no food and bed rest.  It just turned out that my nurse was a former UC patient who had surgery about 7 years prior for UC.  Just by talking with her face to face and watching her in action dispeled all my fears about the outcome.  She worked 10 hour shifts, was a single parent, and ran marathons.  I couldn't believe that she could do all of those things after surgery.  If you have to resort to a surgical consultation ask your surgeon to speak to some of his patients before committing to the process.
 
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


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 1/27/2009 9:36 PM (GMT -6)   
Like suebear mentioned, we spoke with a patient of the surgeon. We specifically asked to speak to someone who had gone through it around the same age as my daughter. The girl had very similar experiences that my daughter had gone through. It was a great conversation and made us (a little) more relaxed and comfortable about surgery.

--Mom of bratcat (17 years old) and nonamejames (20 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds!
11/10/08-Step 2 reconnect!
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 1/27/2009 9:39 PM (GMT -6)   
Sue, your story is amazing and reassuring for those of us that might need to have surgery.
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4/2)
Corti Foam p.m. 5X per week and canasa every other day
Natural anti fungal, anti inflammation supplements and Probiotics.
Bowel Soother and IntestiNew, Fish Oil, Calcium, Multi Vitamin and Melatonin
Eliminated Fructose and Corn Syrup
Reduced sugar in my diet by at least 70%
Reduced wheat products by 70% 
Could never tolerate artificial sweetners
I excersice daily (unless like now : (  I've lost too much weight)
Did I happen to mention I HATE this disease!!!
 
*Recent Changes In Blue*


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 1/28/2009 2:39 AM (GMT -6)   

THanks guys.

I will definitely ask about speaking to a patient.

 

 


Jackie, 43
Pancolitis, DX October 06

Lexapro, colazal 3x3, Synthroid, Protonix, 6MP (75 mg)
Prednisone 20mg, Iron, Vitamin D
Surgery almost certain


Qvist
Regular Member


Date Joined Jan 2009
Total Posts : 145
   Posted 1/28/2009 5:50 AM (GMT -6)   
So far I am not near that stage, and thus haven't investigated much. But from what I read a lot of (most?) people simply get a very close to normal life with the surgery.

As I have been (am) very affraid of my CU getting worse, I have for therapeutic reason looked into the so-called worst case of ending up with surgery.

When reading about how well people are doing afterwards, I more kind of wonder why so many severely infected CU patients fight year af year with non-stop flares trying everything for a cure, instead of just getting the surgery?

I wonder if forums like this sometimes give detours and prolongs the decision that will come anyway?
(99% positive with these informative forums !!!)

I just wonder if we are sometimes exploring the altertive to much and are to sceptical about the traditional way? For me - I'm sure I would be nervous, as it will change how the body works. But from the stat's it will give you a better/more free life .....

Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 1/28/2009 10:35 AM (GMT -6)   
The biggest thing that keeps me holding on to the fight to save the colon is the fear that I will have the colon removed and then get diagnosed with Crohn's later once I have a pouch or bag. Many of those patients (especially if, as I am, they are allergic to 5ASA meds) end up on Prednisone and Remicade again, or even Cipro, even without a colon. But I fully accept that surgery is almost inevitable for me, so there is something to be said for the "why keep putting it off" argument. In the end, it is a big crapshoot (pardon the pun) and that's why it's not an easy decision. And as Suebear has pointed out, the horror stories on jpouch.org are a minority... but it seems I always am one of the miniority that doesn't do great with the textbook solutions. Unless I get confirmed dysplasia or can't get off prednisone (and that seems to be the case, unfortunately) I am going to keep fighting with some last straws such as fecal bacetriotherapy or maybe a different type of worm (have tried hookworm without result, and TSO/pig whipworm with partial results).


Pancolitis ~20 years, once had a full med-free 10 year remission,
but flaring/simmering on and off for years, allergic to all 5ASAs
12.5ish mg pred, 100 mg Imuran TCM (acupuncture & herbs)
Probiotics (PD, Cust.Probiot., Culturelle, VSL3, etc), DMSO, TSO, hookworm
Turmeric/circuminboswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade
 
 
 


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 1/28/2009 10:57 AM (GMT -6)   
I am not sure why I keep fighting- I guess I want to say that I tried everything in my power before the surgery. The surgery would mean a lot of time off work and a lot of time away from my children. Then again, I am not doing a very good job at either right now....

ALso I am afraid that I will go through all of the surgery and recovery and then I will still have problems.

Catch-22 for sure nono
Jackie, 43
Pancolitis, DX October 06

Lexapro, colazal 3x3, Synthroid, Protonix, 6MP (75 mg)
Prednisone 20mg, Iron, Vitamin D
Surgery almost certain


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 1/28/2009 12:20 PM (GMT -6)   
I think it's valid and even correct for us to fight and try everything before throwing in the towel, but it's a personal decision, so I fully respect those who decide they don't want to try everything under the sun first. If surgery was guaranteed not to start new nightmares, the decision would be cut and dry- but the risks of new nightmares are real enough. One thing is for sure- once we commit to and get the surgery, we should never look back and regret, because attitude is everything in recovering to the max.
Pancolitis ~20 years, once had a full med-free 10 year remission,
but flaring/simmering on and off for years, allergic to all 5ASAs
12.5ish mg pred, 100 mg Imuran TCM (acupuncture & herbs)
Probiotics (PD, Cust.Probiot., Culturelle, VSL3, etc), DMSO, TSO, hookworm
Turmeric/circuminboswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade
 
 
 


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 1/28/2009 4:38 PM (GMT -6)   

Probiotic-

You are sooo right about not looking back and having regrets

Today, the surgeon's office called me about scheduling an appointment - so I am meeting the surgeon Feb. 4th....


Jackie, 43
Pancolitis, DX October 06

Lexapro, colazal 3x3, Synthroid, Protonix, 6MP (75 mg)
Prednisone 20mg, Iron, Vitamin D
Surgery almost certain

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