Surgery Date!!!

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RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 1/20/2009 9:26 PM (GMT -6)   
I met with my surgeon today and my surgery is scheduled for February 6th!!!
 
: )
 
I'm going in for more tests on Friday so they can 100% rule out Crohn's, and do some additional bloodwork, then I'm all set!
 
After listening to my options regarding the different types of surgery, the steps, and the possibilities of future surgeries once having a j-pouch, not to mention the continued maintanence and stress of going to the bathroom with a j-pouch, I opted for a permanent ileostomy.  We would like to have more children and continue with our busy lives, and in order for me to just pick up and run, the permanent ileo is the way to go!  I am so excited!!!
 
Ooo...not to mention I will never have to poo again!!!  Can you believe it?!  Never have the urge...never have to make mental notes of the closest bathrooms and my limitations will be nill to none!  Of course I'll still make mental notes of the nicest bathrooms b/c I refuse to take my children into some of the nasty one's I've encountered during my public excursions!
 
Anyway, I just wanted to share my happy news! 
 
I realize that many of you are working toward remission with diet plans and different really interesting procedures.  I wish I could have tried some other things before resulting to this, but I just can't do this any longer.  I've had 5 Remicade infusions and have been on prednisone for almost two years, and never found remission...in fact, it's over a week past my last infusion and I'm still sick.  Not as bad as I was before the infusion, but I'm still struggling and very uncomfortable.  I'm also just so exhausted.  My mom has been here a lot helping with things around the house and with childcare, and I cannot tell you how wonderful it has been.
 
Well...it's been a very long day and my son went to bed early...so I think I will too.
 
Night!!!
 
: )  Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-5 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Meeting with a surgeon next week...and hopefully scheduling the surgery by the end of the month!


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 1/20/2009 9:31 PM (GMT -6)   
Hey Robin- congrats on your decision and good luck! I will keep my eye out for you especially on the ostomy board perhaps? I'll be VERY interested in the tests they run on you to be definitive on UC vs. Crohn's. I am in the grey area so I don't think they can ever get me super-close to 100%, but I want to pursue more of those tests too. I think it's the only issue holding me back now, though probably not for too much longer. All the best!
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
Probiotics (PD, Cust.Probiot., Culturelle, VSL3, etc), DMSO, TSO, hookworm, TSO again
Turmeric/circumin, boswellia, 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 1/21/2009 1:06 AM (GMT -6)   

Robin-

Congratulations! I have been following your story and I wish you the very best. I am still holding on to hope that the 6MP will start working soon.

 

 I admire your courage. I am still very scared of surgery even though it is a real possibilty.

Wishing you a very speedy recovery.


Jackie, 43
Pancolitis, DX October 06

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


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/21/2009 2:13 AM (GMT -6)   
Robin,
I'm so happy for you! :-) I've had a permanent ileostomy for 3 years, and it really is a wonderful thing after having Crohn's for 7 years.
Like you, I never achieved remission with all of the different medicines and special diets, so surgery was also the best option for me.

I knew I was disease-free the day after my proctocolectomy, because the pain I had felt in my colon and rectum for so many years was gone.
Are you going to have your colon and rectum removed, too?

I'm so glad you have a great attitude about your upcoming surgery!

Take care,
Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 1/21/2009 7:35 AM (GMT -6)   
I am having a full colectomy...everything is being removed! My surgeon explained the possibilities of future complications with not removing everything and it just seemed silly to leave any of it! : )

I just cannot tell you how comforting and relieved I feel after scheduling the surgery and knowing that it truly is going to happen! I've heard many people say that the moment you wake up you feel better! One lady told me that she felt 'clean'...how wonderful is that?! I've been fairly miserable the past few weeks and I just keep telling myself that the places where I feel all that pain will no longer be there. Then I also think about the struggles my body goes through in general just trying to fight a diseased organ...so my body is in for a big awakening!!

I think part of the reason why surgery was such an easy decision is 1. my family and supports are amazing...they have made it very clear to my husband and I that we are not alone. Especially after them seeing my struggles lately...it just becomes more and more difficult to hide my misery. 2. I like control. UC has tried so hard to control so many aspects of my life, and I'm tired of the conflict. If I want to walk my son to sleep then hold on to him for another half hour, then I want to be able to do that. Currently I'm lucky if I can rock him to sleep or do anything longer than five or ten minutes to comfort him (he's teething...just finished the molars and working on the eye and stomach teeth). I also want to be in class and not worry about having to run to bathroom...and then worry about anyone else being in the bathroom! I want to go to the store and take my time and walk around without feeling the pains and the fear of urgency. I have lost control and had to adjust so much of my life b/c of this silly disease that I'm tired of it! Not to mention it hurts like hell!!! We all understand that!!! So, because of my family and my personal issues with control (I really have gotten much better with the control issue on a personal level with my husband!) our decision to go forward with the surgery was so so simple. The permanet ileo was a little more difficult, but in the end a breeze of a decision to make because it's what's going to give me back my life quicker and without many future complications.

So...I so wish you all luck with finding your remission and long-term treatments that work. I really am not trying to push the idea of surgery on anyone...that is not my intention at all! I just want to share my happiness with our decision. : ) We all understand how frustrating UC and Crohn's can be, and I feel that we have found our happy medium! It is such a big deal and huge decision to go with surgery and remove an organ! But when I weighed the pros and cons regarding how I live my life now...and how I will be living my life post-surgery...NO BRAINER! : )

Anyway, thank you all for your encouragement and support! I hope that I can be one to be there for you when/if you get to a point where your options are limited or you're just struggling to get by...I've been there too.

I wish the best to you all!!!

: ) Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-5 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Meeting with a surgeon next week...and hopefully scheduling the surgery by the end of the month!


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 1/21/2009 7:50 AM (GMT -6)   
flchurchlady said...
Robin,
I'm so happy for you! :-) I've had a permanent ileostomy for 3 years, and it really is a wonderful thing after having Crohn's for 7 years.
Like you, I never achieved remission with all of the different medicines and special diets, so surgery was also the best option for me.

I knew I was disease-free the day after my proctocolectomy, because the pain I had felt in my colon and rectum for so many years was gone.
Are you going to have your colon and rectum removed, too?

I'm so glad you have a great attitude about your upcoming surgery!

Take care,
Cecilia

Cecilia,
Not meaning to hijack Robin's thread- but can I ask you a bit about your decision to get ostomy with Crohn's?  I am "officially" still UC but it looks very much like indeterminate colitis, because there are some pathological indications in biopsies tending towards crohn's.  I am leaning towards surgery but have been told that if I "really" have Crohn's, then it will inevitably become active in the now unblemished small gut- yet I keep seeing posts in various forums from those with Crohn's who are doing great with ostomies or even j-pouches.  Even if it stays (as is likely) somewhat "indeterminate" I am leaning towards surgery and would just hope for the best, but would like to learn from others' decision-making.  Thanks...
 
 
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
Probiotics (PD, Cust.Probiot., Culturelle, VSL3, etc), DMSO, TSO, hookworm, TSO again
Turmeric/circumin, boswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade
 
 
 


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 1/21/2009 8:17 AM (GMT -6)   
Robin, good luck with everything and keep us updated! :)

Female, Age 20
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (6 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 20 mg Prozac, VSL #3
 


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/21/2009 5:52 PM (GMT -6)   
Probiotic,

Thanks for asking. I had Crohn's in the rectum and descending colon, but never in the small intestine. The disease was so bad that I had fistulas and abscesses that were making my life miserable.

We did a temporary ileostomy first to bypass the colon, and kept the colon in to see if the Crohn's would go into remission. It didn't, and I started bleeding from the rectum after 8 months of not using it, so that's when I asked the surgeon to take it all out and make the ileostomy permanent. For 7 years, I was scared to have an ostomy, so for me to be able to try it out for 8 months before making it permanent was a good thing.

I loved the freedom it gave me from having to go to the bathroom 20+ times a day. :-) Once I had the proctocolectomy, I loved not being sick or having to take prednisone anymore.

My gastroenterologist told me that even though there is a chance that Crohn's could show up in my small intestine, the chance is low, since it has never been there before. So far so good. I've had a nice 3 year remission, but we have talked about starting me on Humira, if it ever does show up there.

Cecilia

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 1/21/2009 6:01 PM (GMT -6)   
Good luck! Congratulations? Not sure what is the right thing to say. Anyway, I hope you recovery is quick and that the pain is tolerable and all goes well. Keep in touch.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete$$ probiotic powder, then Forte, now a stronger one (50 billion). Doing much better, but still having some bad days. 


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 1/21/2009 6:07 PM (GMT -6)   
I'm so happy for you being so happy and at peace with your decision. Good luck with the surgery -- I am sure everything will go well,
Meesh
46 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08 Finally achieved remission mid October 2008!!
12 Remicade infusions: 7/21/07; 8/18/07; 10/13/07; 12/15/97; 1/26/08; 3/8/08; 4/19/08; 5/24/08; 7/5/08; 8/15/08, 9/26/08; 11/08/08; 12/20/98; Current meds & supplements: Lialda, 4 tabs in the morning; Xanax as needed (rarely); Rowesa and/or Canasa; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D; Past meds: Prednisone 4/06-4/08; Entocourt EC; Asacol; Colazal; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 1/21/2009 6:57 PM (GMT -6)   
God's speed Robin!
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*


Y2K Bug
Regular Member


Date Joined Jul 2008
Total Posts : 114
   Posted 1/21/2009 10:05 PM (GMT -6)   
Congratulations on making the decision to have surgery. Its a hard one altho once you have made it, its a relief!

I am sitting at work with my temp ileostomy. Funny noises are coming out of my stoma which is a bit embarassing - especially when its quiet. I wouldn't want to be out on a first date and make that sound. I am about to go to lunch, but I am wondering whether I should empty my bag before I go. Yesterday I forgot to put my wafer support belt on (which I probably don't need - probably a bit of a security blanket). I worried that the adhesive wouldn't hold as edges in some spots was coming away from my skin. Last week the area around my stoma was getting quite red but has settled down this week. There is the daily ritual of changing the bag and also the bi-weekly ritual of changing the wafer. Once I picked the wrong time to change the wafer and have a shower. Every i thought it was time to get out of the shower, the stoma told me otherwise.

In the scheme of things, these worries are all very minor but I thought that a daybyday perspective might provide food for thought.

Hope everything goes well for you Robynbyrd.

PF
Peter
 
dx 1985
prednisolone 9mg tapering
gave up on meds after infliximab (remicade), humira, salofalk (5-asa enema), entocort, Azathioprine, steroid emenas, abadacept
 
have temp ileostomy, reversal probably in Mar/Apr 2009.
 
and I don't know where the nearest toilet is!


madabs
Regular Member


Date Joined May 2008
Total Posts : 388
   Posted 1/22/2009 7:06 AM (GMT -6)   
Good luck and best wishes! You have a wonderful attitude and I'm sure it will serve you well during your recovery and you will enjoy every moment thereafter of your disease-free life.
UC diagnosed 10/05, first symptoms 1983
asacol 12/daily and rowasa as needed 
Trying out Culturelle Probiotic
past rx: colozal, lialda, canasa
i can't complain, but sometimes i still do.  lifes been good to me so far.  -joe walsh


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 1/22/2009 11:58 AM (GMT -6)   
Thanks you guys!!!

: )

It is pretty amazing thinking I will have a disease-free life!!! It's also unbelievable how many of my family and friends are moved to tears that I'm finally going to be better. I really had no idea I was cared for that much!!! Of course we all know we're loved, but to have so many raw reactions from those I love makes me feel even more confident that this is the best decision and I will be okay.

: ) Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-5 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Surgery is scheduled for February 6th!!!  : )   Yea!!!!!!!!!!

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