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2 weeks from 1st surgery

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Posted 9/22/2014 3:01 AM (GMT 0)
I have been reading the discussions on this site for a long time. I have UC and I've been sick with it for 19 years. I am a 58 year old mom and grandma who has always been very active. You all know how UC can come and go, but my last flair almost put me in a coma and I had to be admitted to the hospital very quickly. After 8 days in the hospital, it was decided that I should try Remicade, so I went home, and took prednisone ( and got every side effect, it is evil!!) and felt better. I had two infusions of Remicade and never felt better. So, my doc decided it was time for surgery. I am having the 1st one in 2 weeks. I am a secretary in a high school and have not worked for 3 months. Things have been very difficult to say the least.

I think I've been reading too much about the surgery, stoma, etc. I was hoping for some comments or reassurance. Even though I know I will handle whatever happens and I will be better for it, I need to hear someone else's story. Thanks for being here!
Posted 9/22/2014 9:04 AM (GMT 0)
Hey beatlegirl,

I have Crohn's but am currently one week out from my second surgery, not for a Jpouch but to finish what they couldn't do during my emergency surgery two years ago.

You will get lots of differing opinions about your stoma and ostomy. For me, it changed my life. I haven't felt this good in 20 years. I can eat anything I want, travel, swim, run, bike, play with my daughter. It has given me my life back.

This next surgery is a big one but after that I hope that I will have many years of enjoyment! I can't have a jpouch so my ileo will be permanent. Her name is Lily!

You will have leaks, and issues and other stuff when you first get your Ostomy but the good news is, all that gets better.....way better. There are some on here (Probiotic) that decided to only have the first surgery because he found life with an ostomy is being darn good.

There will be others who chime in today. Weekends are a little quiet on the boards!

I wish you better health!! Ask lots of questions here. There is a wealth of knowledge on these boards.

Kelly
Posted 9/22/2014 2:02 PM (GMT 0)
Welcome Beatlegirl!
I'm 52 and I suffered with UC for almost 20 years. I had surgery in June and now have a permanent ileostomy. I wasn't a candidate for a Jpouch. I'm actually happy about that because I don't know how I would handle having another one or two more surgeries. So this was the best option for me.

I now LOVE my life. I don't take any medications, I eat what I want, go where I want, when I want. I don't have any more pain or that horrible anxiety that comes from worrying about where the closest bathroom is. No more visits to my gastro doc, no more colonoscopies. I just can't believe how great life is for me!!!

Having a stoma is not as big of a deal as I thought it would be. I found a bag that is comfortable for me and so far, I haven't had any leaks or issues. Prior to my surgery, I was going to the bathroom 20 times a day. It's much easier for me just having to empty this bag.

In two weeks, you're going to have a whole new wonderful life (after your recovery) and I'm excited for you!

You'll find a lot of info and support here. Feel free to ask me any questions...I'm happy to help you!!
Posted 9/22/2014 2:37 PM (GMT 0)
Loving the positive input!!
Posted 9/22/2014 2:37 PM (GMT 0)
Thank you so much for support and positive feedback. I am excited, just a little nervous. Right now I'm trying to get everything done as far as covering things at work, doing things around the house, figuring out the best way to deal with everything, so when I come home, I can rest my body and mind. I'll keep you updated, I'm sure I'll have a lot more questions once I get my stoma and start to care for it myself. Again, thanks for being here and I hope I can be here and help other people too!
Posted 9/22/2014 2:39 PM (GMT 0)
Annadee, I too love the positive remarks. I am a positive person with a good sense of humor and I am consciously working to use that to stay up for all of this and think of how great it will be to have my life back!!!
Posted 9/22/2014 3:05 PM (GMT 0)
Hi beatlegirl and welcome!

I suffered with severe pancolitis for 5 years with no relief. None of the meds worked. So I had no choice but to have surgery four years ago and it's been smooth sailing ever since. I opted for a j pouch and I am very happy (and blessed) with my results.

It was a really rough time getting thru it all but looking back now it was such a small blip on the map when you look at the grand scheme of things. I wish I had done it much sooner! It's scary and nerve wracking and all those things but in the end when it's all over, boy is it worth it living life UC free!! All the best to you! :)
Posted 9/22/2014 7:30 PM (GMT 0)

beatlegirl said...
Annadee, I too love the positive remarks. I am a positive person with a good sense of humor and I am consciously working to use that to stay up for all of this and think of how great it will be to have my life back!!!

Same here. I really can't wait to go back to living my life again rather than living in a hospital. I've been in and out of hospitals 4 times within the last month and a half.
Posted 9/22/2014 8:31 PM (GMT 0)
Hi beatlegirl. I'm right where you are only my surgery is 3 weeks from tomorrow. I'm 57 (at least for a little while longer!). Have had UC for 10 years but the last year has been MUCH worse. I'm tired of trying new drugs and having them fail...only thing that works for me is prednisone and even that only works in high dosages now when I'm flaring and if I stop it completely I flare again! I'm going to have 2-step J-Pouch procedure at University of Florida (Shands). I am also nervous about the whole process but am WAY more excited about getting my life back! I also have been reading lots of the posts about ostomies and the surgery...figure the more I know the less foreign it will all seem. Good luck! Will be looking for your posts so I know what to expect turn
Posted 9/22/2014 9:10 PM (GMT 0)
Hi BeatleGirl,

I can absolutely agree with CarenZ post. I had UC for 20 years, had a miserably time, tried to keep going with work & social life - it was darn hard to do - eventually I had to give up work completely in June 2009 & was diagnosed with colon cancer. I had avoided any thought of getting the dreaded 'bag'. Eventually when I had no other choice I agreed to surgery. I just couldnt believe what was ahead of me - In the weeks before the op all I could think of was that on May 13 2010 I was going to be disemboweled & left with a bag. Everyone I saw was getting on with their lives oblivious of what I was facing.

Happily & unbelievably on May 14, 2010 I no longer had UC !!!! Just imagine. The UC was over, actually gone - I had never thought of that !! Sure I had a fair bit of other stuff going on that day (colon gone, End ileostomy & butt sewn). The initial recovery does take time & time seems to go slowly. By 6 weeks I was feeling alot stronger & continued to improve. Now 3+ years on, I work, cycle, have a partner & no one (except very close friends) knows I am 'modified'. I am just back from a 2 hour walk on the beach - now that woild not have been possible before. I share a small office with 5 women & they have no idea.

Luckily I have no problem with the bag & changes - hopefully you will also enjoy no problems.

You are on the right forum to help you through to the next stage of your journey back to beautiful good health

Very best wishes
Posted 9/23/2014 7:20 PM (GMT 0)
Thank you all for sharing your experiences and for giving me a balanced look at the good and the bad. I am a survivor of Bladder Cancer twice over, and I've had many tough life experiences, so I refuse to let this get the better of me. I also have a great network of friends and family who really support me.

But it's GREAT to know I have all of you now, people who really "get it" and know what I'm going through. I will keep you updated and again, thanks for being here!! You are all inspirations to me.
Posted 9/24/2014 3:06 AM (GMT 0)
So glad you are doing well. Keep us posted. We are too new to comment with authority here, but appreciate the information as we lumber forward. My daughter has been fighting the good fight, and is not done yet. 2 more surgeries , but thanks for the posters for info.
Posted 9/25/2014 1:09 AM (GMT 0)
Katmom, I will send healing thoughts to your daughter. I hope all goes well and she can really start her new life.
Posted 9/25/2014 1:50 PM (GMT 0)
Welcome beatlegirl,

I am curious to know why you've having surgery if the Remicade is working?  I understand the suffering and being unable to function.  I fought having surgery for quite a while.  I was 24 at the time and didn't want an ostomy forever.  I got sick enough and had to have emergency surgery.  My doctor said it was no longer my choice, that he was making the call.  After surgery my diagnosis was changed to UC (originally was Crohn's) and was able to have the j-pouch and ileostomy reversal surgeries. 

ladygolfer1119 said...
 "I'm going to have 2-step J-Pouch procedure at University of Florida (Shands). I am also nervous about the whole process but am WAY more excited about getting my life back!"

My j-pouch and ileostomy reversal surgeries were at Shands as well!  Just like ladygolfer1119 said, it is nerve-wracking but the end result is much more exciting.  Keep the bigger picture in mind! 

Surgery was honestly the best decision that I never would have made.  Currently, I don't take any IBD medications.  Yes I still go to the bathroom more than the average person and get dehydrated a little bit faster.  But it's manageable!  I had some complications with my ostomy, but I have heard many people have great experiences with their ostomy.  I have been to the ER once in the past two years while I used to go once a week or so (during my days of sickness).  My life is SO much better.  I am happier and healthier than ever before.  I am praying the same for you.  Surgery is scary but you will absolutely be happy that you did it.  It has changed my life for the better.  Sending prayers your way!

Posted 9/25/2014 7:30 PM (GMT 0)
I misspoke, the Remicade did NOT work for me, I wish it had. I think because the last flare I had was so severe and I have had cancer twice myself and my family is full of it, it was decided between my doc and myself that I was ready to be done. I have been sick for 19 years with not many remissions, so I am just worn out. I almost lost my job I've had for 16 years because of so many sick days.

You are so right, I am keeping the bigger picture in mind. I know I'm in for some pain and some changes, but I am hopeful that the changes will all be for the best in the end. Thank you for your thoughts and prayers.
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