Really getting scared now.

[30yrsofcrohn's]

I will be having my colon removed in six days and I really really need to get it together. I'm so afraid of what's going to become of me that I am not sleeping at all. I have been taking melatonin along with ativan and still I cannot rest enough to get a decent night's sleep.

I had my pre-op appt yesterday and all I kept hearing from the physician's assistant and the pre-op nurse is that "everybody is different' speech. I wish someone could please let me know how a subtotal colectomy effected their life. I'm so afraid that I'll be debilitated and won't be able to leave my house for fear of my bowels letting loose causing panic and embarrassed. I'm also very very afraid of the pain that I've read that comes once you wake up in recovery. The PA said that I'm going to have a epidural for the first three days and that should help with the pain, but damn, that's not encouraging at all!!! She said that it won't be as bad as it could be if it was to be an open surgery. I'm not comforted at all. I want to know if anybody has had the laproscopic:sign0085: surgery and was so full of morphine that they did not experience the pain so much. Could somebody please please reassure me? I'm about to lose my mind right about now, and I'm not being overly dramatic at all, I"M SCARED!!!!http://www.crohnsforum.com/images/smilies/sign0085.gif

 

[nogutsnoglory]

I had part of my colon removed and pain wasn't too bad. Just hard to get in and out of bed. Are you going to need a bag temp or permanently?

 

[Jennifer]

Hi 30yrsofcrohn's! My surgery was a resection where part of my colon and TI were removed (only 8 inches). It was laparoscopic with hand assist (meaning they make a larger incision about 4 inches or so). I was pretty drugged up when I finally woke and I wasn't in so much pain that it was unbearable. It really didn't hurt until I moved around. With just laparoscopic you shouldn't have as much pain because the incisions are so much smaller. I woke without a cath (you'll probably have one would be my guess since its more the norm these days) and only had the morphine pump, no epidural (never had one but I'm told you don't feel a thing with one, so you sound lucky so far). The pain shouldn't be too bad is what I'm saying (if you notice it at all with the epidural). Unfortunately I don't have experience with the entire colon being removed so I hope someone will chime in in that regard. Good luck with your surgery and keep us posted on how it goes.

 

[2thFairy]

Entire colon or partial colectomy? Bag or no bag?

 

[30yrsofcrohn's]

Entire colon or partial colectomy? Bag or no bag?

To answer, they are removing the entire colon and leaving about 23 cm of sigmoid to attach to my small bowel. No bag is planned at this point but I was told that could change if it becomes necessary. I'm petrified!

 

[30yrsofcrohn's]

I had part of my colon removed and pain wasn't too bad. Just hard to get in and out of bed. Are you going to need a bag temp or permanently?

I was told that I would'nt need a bag at all. Im very frightened! My surgeon seems very confident so that gives me some relief but I feel like I'm going to have a nervous breakdown before I go in.

 

[30yrsofcrohn's]

Hi 30yrsofcrohn's! My surgery was a resection where part of my colon and TI were removed (only 8 inches). It was laparoscopic with hand assist (meaning they make a larger incision about 4 inches or so). I was pretty drugged up when I finally woke and I wasn't in so much pain that it was unbearable. It really didn't hurt until I moved around. With just laparoscopic you shouldn't have as much pain because the incisions are so much smaller. I woke without a cath (you'll probably have one would be my guess since its more the norm these days) and only had the morphine pump, no epidural (never had one but I'm told you don't feel a thing with one, so you sound lucky so far). The pain shouldn't be too bad is what I'm saying (if you notice it at all with the epidural). Unfortunately I don't have experience with the entire colon being removed so I hope someone will chime in in that regard. Good luck with your surgery and keep us posted on how it goes.

I appreciate the support, thank you so much.

 

[nogutsnoglory]

Wait you are removing all colon and don't need a bag? How is that possible?

 

[2thFairy]

I think a few other people around here have had a partial colectomy with no bag, but I'm not sure who...maybe Slim Johnson.

I've had a total colectomy with J-pouch formation and have a temp. bag at the moment, so my surgery was not the same as yours. Also, mine was done as an open procedure secondary to adhesions from prior surgeries. After reconnection I will have the challenge of stools changing while my body adjusts to no longer having a colon and learns to cooperate. Diet will help to thicken stools and good sphincter tone will help prevent accidents. Practicing Kegel exercises is good to increase sphincter tone.

 

[30yrsofcrohn's]

Wait you are removing all colon and don't need a bag? How is that possible?

I'm having 23 cm of my sigmiod connected to my small bowel with no bag (temp or oterwise) . The surgery is called a subtotal collectomy with an illiiasrectal anastamoses (spelling error I'm sure) I had a flex scope where they tattoed where the join will be. No bag unless they find it necessary during the surgery. I've read other posts where people have had similar surgeries with no bags Is this uncommon?

 

[Slim Johnson]

Thanks for the tag 2thFairy.

I had a right hemicolectomy, with removal of my sigmoid colon, and parts of my small intestine, including my terminal ileum. My procedure was open, and very painful. I had something akin to a epidural, but not as long lasting(?). I woke from anesthesia, and the pain was so terrible, because I could feel the incision, and both anastamosis! It was god awful, and the pesudonarcotics they gave me didn't help at all. I asked for demoral, and was denied since they didn't want to shut down bowel function. I basically lived with pain that was 8 out of 10 for three days, before I started feeling better. NOW just to be clear, I had an OPEN laparotomy, not a lap procedure. Which was why my pain was so bad.

I also totally identify with not being able to sleep days before the procedure. I would sleep maybe three hours at a time, and the anxiety/fear would keep me up, frantic! I was afraid of dying on the table, waking with a stoma, losing enough gut to have short bowel syndrome, and so many other irrational ideas.. It was the worst part of the whole ordeal!

I do want to let you know that being scared out of your mind is okay. You are going to have a major surgery. It would be foolish not to be a little freaked out. I also want to reassure you that you will be alright. You will recover, and once you're past the first few days post-op (the first three are the worst), you will find yourself rapidly feeling better and better!!

I hope that you have some support while you are hemmed up in the recovery suite. Getting out of bed was the toughest thing for me. My abdominal muscles were cut, and using them SUCKED! BAD! for about three days. After that, it still hurt to sit up, but not nearly as much. I also managed to use my arms as levers to lift myself up, and to change position.

If you like, I can PM you my phone number, and we can talk about this on the phone. Perhaps hearing this will be better for you, than just reading it.

Best of luck with the procedure, I am sure you will do just fine!

 

[JMC]

30yrsofcrohns, what can I say to make you feel better? I suppose I could be called 31yearsofcrohns, as I was first ill aged 9 in 1981 and eventually had surgery this year in March. The procedure I had was pretty much identical to Slim Johnson's except that I had a temporary stoma. There are lots of pictures and write up elsewhere on the forum if you want to know all the details.

Did it hurt when I came round? Yes it did, but this was brought under control by PCA morphine. At any point you are struggling, just remember the pain does ease off quite quickly, you just need to stay relaxed and let the medication work.

Did having a stoma (for 3 months) have an effect on my quality of life? I would say definitely "no!" In some respects, it was much better than having to sit on the toilet! Really, a stoma is no big deal, but you will only know that if you end up with one.

Did I have any issues with losing control of my bowels? Definitely not when I had a stoma as that cannot happen. Since having my stoma reversed, I have had some pain and urgency, but nothing that I cannot handle.

The most important thing to remember is that handling this illness is far harder than dealing with surgery. If you have got through 30 years with Crohns, the surgery is a breeze by comparison and hopefully will immediately make you feel substantially better, like it did for me.

 

[Slim Johnson]

the most important thing to remember is that handling this illness is far harder than dealing with surgery. If you have got through 30 years with crohns, the surgery is a breeze by comparison and hopefully will immediately make you feel substantially better, like it did for me.

+100,000!!

 

[30yrsofcrohn's]

Thanks for the tag 2thFairy.



I had a right hemicolectomy, with removal of my sigmoid colon, and parts of my small intestine, including my terminal ileum. My procedure was open, and very painful. I had something akin to a epidural, but not as long lasting(?). I woke from anesthesia, and the pain was so terrible, because I could feel the incision, and both anastamosis! It was god awful, and the pesudonarcotics they gave me didn't help at all. I asked for demoral, and was denied since they didn't want to shut down bowel function. I basically lived with pain that was 8 out of 10 for three days, before I started feeling better. NOW just to be clear, I had an OPEN laparotomy, not a lap procedure. Which was why my pain was so bad.

I also totally identify with not being able to sleep days before the procedure. I would sleep maybe three hours at a time, and the anxiety/fear would keep me up, frantic! I was afraid of dying on the table, waking with a stoma, losing enough gut to have short bowel syndrome, and so many other irrational ideas.. It was the worst part of the whole ordeal!

I do want to let you know that being scared out of your mind is okay. You are going to have a major surgery. It would be foolish not to be a little freaked out. I also want to reassure you that you will be alright. You will recover, and once you're past the first few days post-op (the first three are the worst), you will find yourself rapidly feeling better and better!!

I hope that you have some support while you are hemmed up in the recovery suite. Getting out of bed was the toughest thing for me. My abdominal muscles were cut, and using them SUCKED! BAD! for about three days. After that, it still hurt to sit up, but not nearly as much. I also managed to use my arms as levers to lift myself up, and to change position.

If you like, I can PM you my phone number, and we can talk about this on the phone. Perhaps hearing this will be better for you, than just reading it.

Best of luck with the procedure, I am sure you will do just fine!

Thank you so much for sharing and assuring me! I would love to talk to you on the phone. I called the nurse again today to ask her about the pain meds after tgr procedure and she was so nonchalant about everything. They talk about what I may expect like its no big deal that I may think I'm passing gas and by mistake mess in my pants! Yikes!:devil::dThe worst part of this is the knowledge that I'm about to lose a body part and as diseased as my colon is, I'm so scared of what my life might become.

I will look for your phone number,

 

[JMC]

The worst part of this is the knowledge that I'm about to lose a body part and as diseased as my colon is, I'm so scared of what my life might become.

That is an understandable fear. What will your life become? Better!

For me, losing a part of my body had an odd effect on me. It has made me feel stronger, both mentally and physically. It has made me realise that who I am is not defined by my physical body. I can lose part of my intestine, but I am still me. Just a healthier me. I have dealt with major surgery and it felt like a doddle, mostly because I was in denial about how unwell I really was and had been just battling on through it for years. I overcame something major and it has made me feel like I can cope with anything.

Honestly, once you have dealt with it, and you will, in a few months time you will be the one reassuring other people that everything will be ok.

 

[30yrsofcrohn's]

JMC....You really are a special person and believe me when I tell you that I took such comfort from reading your reply and all the other replies from this forum. I have been seeing a therapist for the last couple of months and for what it's worth, I've gotton more support and help from reading everybody's posts. I thank God for this website.

I appreciate everything you said and I'm gonna hold on to those thoughts. You are absolutely right, my colon does not define who I am, I'm still gonna be the same person after Friday. I won't forget to also give back what was given to me, and I'll continue to post my progress and reach out to others who are going through similar trials.

Again, thank you JMC!! :highfive:

 

[Heather_D]

Hi 30yrsofcrohn's. Hope your surgery went well on Friday. I know it's terrifying, I was so scared and become very obsessive with reading other's stories. I personally can say the pain I had was less than I expected and only really bothered me when I tried to get in and out of bed. I only had a morphine drip for pain, but that was enough and I stopped all pain meds by the 4th day post-op (this obviously varies greatly with people). I agree with JMC, the hardest part was actually dealing with the surgery/loss of part of you. I think this is an area I still struggle with occasionally. Overall I feel great though, my surgery was about 4 months ago. Most days I tell myself the scars are a reminder of what I went through and how strong I really am. Hope you are doing well and you are back up and feeling great in no time! Keep us posted!

 

[KWalker]

This whole thread is so inspiring in a weird way. Hopefully you're surgery went well and you're on your way to recovery!

 

[30yrsofcrohn's]

First time Ive felt that I can sit up withup upchucking! Well, I was told that the surgery went well, my surgeon was very confident that I did the best thing because my colon eas very very diseased! He reported that my strictures was truly horrible and that he had to some extensive work to keep me out of a stoma. My bowels have been pretty stable and even though my bowels were very loose it wasnt too bad! My main problem is the extreme exhaustion and sick to my stomach feeling· When they re oved the morphine pump yesterday was when I really felt the pain and I moaned and groaned all last night. Im just now feeling better and Im actually sitting up and eating a regular tray. I had parmesan talipia and pasta with tomato sauce! Didnt eat a whole lot but enough to get me out of this bed for a nice stroll
Getting tired again so Ill report back more tomorrow

 

[Heather_D]

Glad to hear from you! Hope you continue to do well!!

 

[JMC]

Good to hear from you, it sounds like you are doing well and it's always nice to avoid a stoma!