New here, surgery date scheduled

Hi all,

I've been suffering from Crohn's Disease since November 2007. I've been on so many different types of medicines to try to treat the symptoms but none have worked for the long term. After consulting with my doc, we feel it's best to remove the colon and replace with an ileostomy (he's going to leave the rectum and everything south for when those areas heal to possibly reconnect).

I've surfed the site a little bit ("long time listener, first time caller" kinda thing) but it's definitely a scary thing. This is actually the 2nd time we've scheduled surgery, I backed out of the first appointment to try Humira (which didn't work for me). At that time, which was last fall, my wife (a registered nurse) was supportive of the surgery and I was scared out of my mind. Well, now the roles are reversed. Sure, I'm scared, but I'm tired of missing out on my life. She's not taking it so well.

Surgery is scheduled for 3/5/14 and I have a pre-op appointment this friday. I'll also meet with the ostomy nurse and they'll decide the exact location for the ostomy. If anyone could provide some recommendations for coping with all of the feelings and emotions leading up to the surgery that would be great.

Hi there! I'm sure you will get lots of great advice from the people on this forum. I have only had my ileostomy for 2 weeks and mine is just temporary while I heal (had a bowel resection), but one thing I can tell you, it is SO nice to not feel sick all the time. Sure the bag is a little inconvenient, but there's nothing you can't do with it, and if it gives you your life back, then it's definitely worth it! Good luck

Hi I've had my ileostomy about 3 months and I love it.before the surgery i was terrified that I wouldn't get on with it and I would hide away at home and miss even more fun with my kids!but it has improved my life so much I haven't found anything it stops me doing although I think my husband is getting annoyed as I'm always going for girly nights out now that I can!recovering from the surgery and learning how to deal with your stoma takes a little time and patience (it took me about a month)but its all worth it in the end.good luck

I've had my stoma nearly four months now and I love it. Mine's permanent and I'm so glad, I never want to go back to all those disgusting, painful hours alone in the bathroom, and all the hours beforehand not knowing when I'd need the bathroom, and then afterwards not knowing if I'd finished.

Now my bag fills, I have a very large window of time to empty it - it will be hours to fill up so even when the stoma's very active I can empty it when I choose. It's so quick, painless and relatively clean. The only downside for me has been that I have to be much more careful with my diet now.

A stoma is either to improve a person's quality of life, to reduce the possibility of future health problems, or to save a life. Think of your stoma in the context of whichever of these is the case for you.

Expect some problems in the beginning. It can take a while to get into a routine of taking care of your stoma, and of finding solutions to any problems that may arise. If you experience any difficulties - leaks, skin problems, etc. - remember that you'll have stoma nurses and this forum to help you. The companies providing ostomy products often have helplines and can give you advice too. Don't feel embarrassed about anything you may want to ask. Any problem you experience, there will be people who can help you.

Major surgery can lead to depression. It's quite common to feel low after any kind of major surgery - it's just a shock to break the routine of your normal life in that way. It also doesn't help that the time when you are first learning about your stoma is also obviously the time you are also feeling physically and emotionally run down from the surgery. So if you feel depressed after the surgery at all, remember that things will get a lot better before too long.

The same goes for your wife too - perhaps she'd like to join this forum for advice and support too? There is a thread here: http://www.crohnsforum.com/showthread.php?t=48675 for those who have a spouse with Crohn's.

I had my ileostomy done in Aug 2013 because of Crohn's and it's been truly amazing to have my life back. Don't be put off by the "it's a bag" thing. We just poop differently, that's it.

I learned to accept my surgery very quickly, before i had it done. YouTube videos and blogs helped a lot.

I wish you all best and look forward to reading about your life with an ostomy

Thank you all for the kind words and advice. At this point I'm willing to do anything to escape the pain and get back to a point where I can actually enjoy life rather than use medicines to even have a chance of that. I will definitely show this forum to my wife, it might help her cope.

It's very hard to cope mentally in preparation for this surgery but it's better than just waking up and seeing a bag on your abdomen.

I would say you are on the right track by honing us here. Watch videos, read literature and fully immerse yourself in what it entails to have a stoma so you are prepared and can better handle the challenges when they present themselves.

nogutsnoglory said:

It's very hard to cope mentally in preparation for this surgery but it's better than just waking up and seeing a bag on your abdomen.

I would say you are on the right track by honing us here. Watch videos, read literature and fully immerse yourself in what it entails to have a stoma so you are prepared and can better handle the challenges when they present themselves.

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Thanks for the advice. I'm taking in a little bit every day in preparation. I decided to start a blog as a way to have an outlet for my feelings. Check it out!
http://blastoffcrohns.blogspot.com/

ECU_Drummer said:

Thanks for the advice. I'm taking in a little bit every day in preparation. I decided to start a blog as a way to have an outlet for my feelings. Check it out!
http://blastoffcrohns.blogspot.com/

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Awesome, man! I don't see a link on mobile, but if you add an rss feed or something , I'm sure many people would love to follow your progress. I know I will. Good luck!

I will definitely have to figure out how to do that, thanks for the suggestion!

ECU_Drummer said:

I will definitely have to figure out how to do that, thanks for the suggestion!

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One of the things I miss most since getting sick was drumming. As a young teen, I was always tapping on stuff and air drumming, and after much deliberation, my parents bought me my first drum kit. Listening to Rush (I'm a huge Neil Peart fan), Nirvana, Led Zeppelin, and popular 90's bands, I became quite good and played in several bands. When I moved to my current home in 2005, I couldn't bring my drum set with me, since I live in a semi-attached home and the noise would be too much of a problem, so a huge part of my life was missing. Then Rock Band for the Xbox 360 came out and I could sorta get some drumming in, but it was never like the real thing - I just couldn't lose myself in a game the way I would from playing along to my favorite songs.

Then I got sick in 2008 and the drumming basically stopped soon after, as my perianal disease made it difficult and painful to stay seated for very long. Now that I'm feeling better with an ostomy, I'm contemplating getting an electronic drum set (if I could find some place to put it!) and look forward to being able to play again.

From one drummer to another, I don't think there's anything quite as therapeutic as playing the drums :thumleft: Don't every stop!

VeganOstomy said:

One of the things I miss most since getting sick was drumming. As a young teen, I was always tapping on stuff and air drumming, and after much deliberation, my parents bought me my first drum kit. Listening to Rush (I'm a huge Neil Peart fan), Nirvana, Led Zeppelin, and popular 90's bands, I became quite good and played in several bands. When I moved to my current home in 2005, I couldn't bring my drum set with me, since I live in a semi-attached home and the noise would be too much of a problem, so a huge part of my life was missing. Then Rock Band for the Xbox 360 came out and I could sorta get some drumming in, but it was never like the real thing - I just couldn't lose myself in a game the way I would from playing along to my favorite songs.

Then I got sick in 2008 and the drumming basically stopped soon after, as my perianal disease made it difficult and painful to stay seated for very long. Now that I'm feeling better with an ostomy, I'm contemplating getting an electronic drum set (if I could find some place to put it!) and look forward to being able to play again.

From one drummer to another, I don't think there's anything quite as therapeutic as playing the drums :thumleft: Don't every stop!

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I couldn't ever stop! I use it as my escape and for the most part it will take my mind off of the pain. I knew things were taking a turn for the worse when I had to get up during a song in rehearsal to use the bathroom. Before then, regardless of what I was playing (I studied percussion for 3 semesters in college before changing my major to business) it would be my escape. I can't imagine where I would be in life without the ability to play drums!

Hi,

I just wanted to say that for me at least, having an ostomy has been so worth it. When I was 19 I made the choice to ditch my j-pouch for a permanent ostomy, and I'm now 30 and have never regretted it. That's not to say I've always loved having an ostomy, but given my options, I have never doubted that it was the best choice. It has been so freeing to never have to worry about the bathroom or what I eat, and to feel good 99% of the time. I have done so many things that I NEVER could have done before (long hikes, 8 hour canoe trips, biking to work, eating 4 plates of food at an Indian buffet restaurant...) not to mention college, grad school, job, husband, and baby.

It wasn't an easy adjustment but it was worth it. After a couple years I didn't even think about it any more, it just feels normal. Now that I have a husband and daughter that need me, I couldn't even imagine going back to being as miserable as I was.

Best of luck to you. I know it's scary knowing you can never go back, but feeling good and being healthier is priceless.

littlemama1 said:

Hi,



I just wanted to say that for me at least, having an ostomy has been so worth it. When I was 19 I made the choice to ditch my j-pouch for a permanent ostomy, and I'm now 30 and have never regretted it. That's not to say I've always loved having an ostomy, but given my options, I have never doubted that it was the best choice. It has been so freeing to never have to worry about the bathroom or what I eat, and to feel good 99% of the time. I have done so many things that I NEVER could have done before (long hikes, 8 hour canoe trips, biking to work, eating 4 plates of food at an Indian buffet restaurant...) not to mention college, grad school, job, husband, and baby.



It wasn't an easy adjustment but it was worth it. After a couple years I didn't even think about it any more, it just feels normal. Now that I have a husband and daughter that need me, I couldn't even imagine going back to being as miserable as I was.



Best of luck to you. I know it's scary knowing you can never go back, but feeling good and being healthier is priceless.

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Thanks for the words of encouragement! My doctor and surgeon both told me that I wouldn't have to worry about the bag holding me back from enjoying life and this post has confirmed that fact. I'm ready for the opportunity to not have to spend 45 mins in the bathroom in pain in the morning or waking up 2-3 times every night to use the toilet. I really like the idea of avoiding pain so bad that makes me want to vomit!

I'm hoping I'll be able to enjoy coffee and spicy foods again. The caffeine does a real number on my large bowel, but hopefully since I'm having that removed I'll be able to enjoy it again. I used to drink it every morning and I'm sure some of you can understand how great a cup of coffee can be in the morning...

I'll be sure to keep you all updated. I plan on writing a blog post per night up until "D-Day" too-I've found it helps me cope with all of this.

Tomorrows the big day mate Good luck!! keep us all posted!

Good luck tomorrow!!!

Thanks you guys!

good luck! I hope tomorrow goes smoothly!

Good luck tomorrow ! I hope you have a speedy recovery. :dance:

Good luck!! Keep us posted on your progess...

Good luck and keep positive you will be feeling better than ever soon

Well, I survived. Surgery went great and was smooth from smart to finish and took about 2 hours once they started cutting. It was all laparoscopic so I'll likely be in the hospital through the weekend at the latest. I was in quite a bit of pain when I woke up and morphine didn't help so they've had me on dilaudid where I can control the dose myself (up to a certain limit of course). It's my first time spending the night in the hospital so I didn't sleep that great last night but I did take two short walks, stood to pee four times and learned how to burp and change the bag and wafer. Will likely blog in a little bit tonight but I am pretty sore. Been on a liquid diet+jello and Popsicles. If I can get my surgeon to send me a pic of my colon I'll post it, I can't believe how I was functioning with that thing in me. It looked horrible, like raw hamburger meat.


Will keep you all updated throughout my recovery. Thanks for the well wishes.


HD

ECU_Drummer said:

Well, I survived. Surgery went great and was smooth from smart to finish and took about 2 hours once they started cutting. It was all laparoscopic so I'll likely be in the hospital through the weekend at the latest. I was in quite a bit of pain when I woke up and morphine didn't help so they've had me on dilaudid where I can control the dose myself (up to a certain limit of course). It's my first time spending the night in the hospital so I didn't sleep that great last night but I did take two short walks, stood to pee four times and learned how to burp and change the bag and wafer. Will likely blog in a little bit tonight but I am pretty sore. Been on a liquid diet+jello and Popsicles. If I can get my surgeon to send me a pic of my colon I'll post it, I can't believe how I was functioning with that thing in me. It looked horrible, like raw hamburger meat.


Will keep you all updated throughout my recovery. Thanks for the well wishes.


HD

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Awesome man! That's really good progress! Keep walking - it helps for sure, and I'm glad they were able to do it completely laparoscopically, since that will reduce your recovery time significantly. :headbang:

Just got discharged, currently in the car on the way home! Still a bit sore, but they sent me home with a prescription for Percocet 5/325. Since it's not a permanent ileostomy they want me to continue Humira, 6MP, dicyclomine, and anything else except the Apriso. They also didn't have to take as much of my colon and he said my rectum was in a lot better shape than he thought, so hopefully we'll be able to reconnect sooner rather than later!

Yay!! Great news!

You'll be back to watching NASCAR soon mate! I look forward to arguing how Rallying is better when we are both recovered!!

ScottBoyd said:

You'll be back to watching NASCAR soon mate! I look forward to arguing how Rallying is better when we are both recovered!!

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Hope you have the same success I've had so far in the short term. I'm ready for that debate!

One thing that helped me was drinking as much water as possible. Not only does staying hydrated keep you healthier (duh) but they're taking the organ from your body that is responsible for absorbing the liquid from the fuel we input in our bodies. I bought a nalgene/camelback style body and carry it everywhere.

Any questions I can help out with for the final hours going until the surgery?