I'm UC FREE!!!!

I am so happy for you Robin, you had to compromise (get your colon out) but you have your life back and that's the main thing, you sound so happy with everything including your decision to have the surgery and I'm so glad for you. You have your whole life ahead of you and no more IBD limitations, congratulations!!!

:)

congratulations.
And thanks for the posting!! Nice to know that the worst case outcome isn't necessarily bad at all

supersaw said...
You said your booty is still sore? And you still take pred? Why?

She said it's sore because it's all gone- when you have the total surgery, they take everything out including the rectum and close you up, so I would imagine it would be a little tender down there for awhile!!

Also, you can't stop taking pred cold turkey, even if you're not at risk of flaring up again, because there are serious (sometimes even life threatening) withdrawal effects if it is not tapered. She said she was on 40mg up to surgery so she'd have to take some time to taper off that.



Anyway, CONGRATS Robyn that's so exciting!! Glad to see you're soo happy with your decision; gives me a little hope for the future

WooHoo Robyn!!...awesome you're starting to feel so much better. Hope the rest of your recovery goes smoothly.

quincy

How wonderful!

I'm so happy to hear that you're doing well. It must be a relief to be through the surgery and to be on the road to recovery.

Robin, I am very happy for you....it's got me thinking now.

NBT

THANKS YOU GUYS!!! : )

I absolutely love that my ileostomy is permanent. I will have no more surgeries and I am starting to speed back up with things and get on with my life! It's wonderful!!!

I spent the day with my husband out of town shopping and just hanging out...LOVED IT!

I was a little nervous about in public with my accessory (that's what I call my ileo) but it worked out well. I emptied it at Sam's Club b/c they have large bathrooms, but really it doesn't matter b/c they have deoterizors and it really makes a huge difference...so really there is no need for me to stress.

I will be honest...having an ileo does take some adjustment...and I was really trying to prepare myself ahead of time by having thoughts of it being on me and just getting myself mentally prepared with research and visual images.

BUT...I will never again have to go poo!!! : ) I will never again need to run to the bathroom with urgency and NEVER be in pain again...well, UC pain that is...it was horrible! I don't want the j-pouch b/c there is no guarantee for 3-4 bm's a day...and there really are higher risks for future surgeries with a j-pouch. And like I said, I don't want anymore hospital stays or future complications if I can help it. The only hospital visits I want is for my future pregnancies, which will not be for a few more years, but that will hopefully be the only times I have to be back in those stuff rooms with those lovely gowns. : )

I do not regret my decision at all and have not regretted it once since the surgery...I was angry with my surgeon for his dumb decisions, but never have I thought this was wrong...I'm healthy again...my body no longer is at war with itself. Words simply cannot describe how extrodinary my life is now.

Robin,
I am so very happy for you. Please continue posting and let us know how you are progressing.

Blessings,
Melissa

RobinByrd said...
THANKS YOU GUYS!!! : )

I absolutely love that my ileostomy is permanent. I will have no more surgeries and I am starting to speed back up with things and get on with my life! It's wonderful!!!

I spent the day with my husband out of town shopping and just hanging out...LOVED IT!

I was a little nervous about in public with my accessory (that's what I call my ileo) but it worked out well. I emptied it at Sam's Club b/c they have large bathrooms, but really it doesn't matter b/c they have deoterizors and it really makes a huge difference...so really there is no need for me to stress.

I will be honest...having an ileo does take some adjustment...and I was really trying to prepare myself ahead of time by having thoughts of it being on me and just getting myself mentally prepared with research and visual images.

BUT...I will never again have to go poo!!! : ) I will never again need to run to the bathroom with urgency and NEVER be in pain again...well, UC pain that is...it was horrible! I don't want the j-pouch b/c there is no guarantee for 3-4 bm's a day...and there really are higher risks for future surgeries with a j-pouch. And like I said, I don't want anymore hospital stays or future complications if I can help it. The only hospital visits I want is for my future pregnancies, which will not be for a few more years, but that will hopefully be the only times I have to be back in those stuff rooms with those lovely gowns. : )

I do not regret my decision at all and have not regretted it once since the surgery...I was angry with my surgeon for his dumb decisions, but never have I thought this was wrong...I'm healthy again...my body no longer is at war with itself. Words simply cannot describe how extrodinary my life is now.

 

Kinda says it all doesn't it

You know...for those of you pondering surgery it really is a huge decision. Mine was easy because UC was just becoming too much of an inconvenience for me and I was suffering day in and day out. I am a control freak and UC started taking control away from me and making me live my life around it's demands. That was definitely not okay with me. I also have a 13 month old and he needs me to be the best I can be, and I just haven't been able to be there 100% of the time b/c of runs to the bathroom or pains that inhibited my ability to pick him up or hold him.

I would suggest making a list of the pros and cons the surgery would have on your life. I started a 911 Card, which I ended up not needing after all, but it had a list of the reasons why the surgery needed to happen and then a list of all my supports with their phone numbers. My pros for the surgery had at least 20 reasons, and I know that if I got more detailed it would have been close to 100. : ) I had some fears prior to the surgery, but once I got home I started to adjust fairly quickly. The first week was rough, but really I am just so appreciative to be healthy again! The ileostomy is such a small price to pay in getting my life back and no longer having to feel that UC pain...it is definitely a welcomed accessory!!!

So, if surgery is looking like a possibility in your future please know that it's really not that big of a deal once the surgery is past and your on the road to healing! Also, once you're UC free it is AMAZING!!!

I had my surgery in Columbia, Missouri...I would not recommend my surgeon, as he is now dubbed Dr. Ass----. : ) However, I asked about surgeons in Missouri on j-pouch.com and a gentleman told me about a woman doctor in Kansas City who was really wonderful and had great bedside manner. My doctor is a shmuck. I told him so yesterday at my first follow-up appointment. I'm hesitant to go to my second but my family is on me to be responsible...even if it is with an ass. : )

Many people travel to Chicago for their surgery and there are a few other locations that get rave reviews. I know the Mayo Clinic is wonderful as well. My great-uncle is a retired surgeon who specialized in abdominal surgeries and he was going to get me in with his partner, but if I followed through with the surgeon in Columbia then my surgery would have been sooner...and at the time I liked my surgeon...his incompitence became known only after my surgery (which he did do a good job with)...it's just his pain management practices that suck.

Anyway, today was the first day I've taken one or two vicadin. And today it's been two weeks since my surgey! : ) Whoo-hoo!!!

Today I've ate jumbo smarties and mustard!!! Not together. : ) I eat sour cream almost every day b/c I can! I had syrup with my breakfast and no trouble!!! I also went out for breakfast with my husband. We ran an errand afterward and not once did I think about a bathroom. It makes me emotional thinking about it. My outings are not controlled by the colitis. I didn't stress or sweat b/c of cramping and severe abdominal pain. I 'enjoyed' the time with my DH and was able to focus on him 100%. Do know how wonderful that feels? You guys, having this surgery has given me back far more than I ever knew I had lost. I hadn't realized my focus was not fully on those around me...until now. I find myself being more attentive to my loved ones and able to make dinner dates without a thought. It's unbelievable. I am looking forward to our dinner date with some friends tomorrow night...and we're going to 'their' house! All I need to do is pack my needs for my accessory and I'm good to go! I mean...serioiusly...I ate MUSTARD people!!!

: ) Okay...I'm done bragging. : ) It's just so amazing because every day I'm learning new perks to having a total colectomy. *happy sigh*

I really do not want to offend anyone, and I'm not trying to push anyone to surgery. But please know that there is a life...an amazing life...afterward, and there is always 'hope'! I hadn't realize I had lost my hope until we decided on the surgery and it was scheduled. : ) My hope was renewed and even through all my fears and apprehensions...I knew my fight with UC was over.

You are all in my thoughts...and please email me if you want to speak privately about the surgery or any questions or apprehensions you may have.