Surgery planned 24 jan scared !!!!!!

This is only my second post on CF im 17 and in the past i have had remicade and azathioprine just recently i had a reaction to remicade i stopped breathing!!

Last few weeks i have had a cystoscopy and they found a lump of what they suspected to be bowel and the ct confirmed it i have had a chat with a surgeon and he has recommended surgery in the past i have been really scared about it but i have the date 24 jan to separate by bowel from my bladder remove a section of bowel and then repair my bladder. they said that it will be a pretty major op and i will be on a special ward.
They have asked me do i want a epidural or a morphine pump i dunno which one i want.

what dose a epidural feel like and what dose morphine feel like ?

Im really scared about the operation they are doing it open and what should i expect when i come around what will i feel like tubes i will have in and and i don't know what to expect since i have booked the operation i have hardly slept i dont know what to do :'(

:frown::frown::frown::frown::frown:

:welcome: to the forum, I can see why you are worried and you are intitled. Epidural means you are frozen in that area and you dont feel nothing. I wished I had that ,and they tried and it would work, I could of told them that as labour with my daughter was natural because they tried 3 times. I have always been out of the "norm: tho :lol:.

Morphine is not too bad but becareful how much you pump, it can cause hallucinations, and I hate that. I dont drink either so I dont like feeling out of sort.

I was you, try the epidural , and if it isnt enough or working then do the morphine. Try not to worry, the stress makes it worse. Hope your op goes successfully and you have to keep us informed ok? Good luck!

Pen said:

:welcome: to the forum, I can see why you are worried and you are intitled. Epidural means you are frozen in that area and you dont feel nothing. I wished I had that ,and they tried and it would work, I could of told them that as labour with my daughter was natural because they tried 3 times. I have always been out of the "norm: tho :lol:.

Morphine is not too bad but becareful how much you pump, it can cause hallucinations, and I hate that. I dont drink either so I dont like feeling out of sort.

I was you, try the epidural , and if it isnt enough or working then do the morphine. Try not to worry, the stress makes it worse. Hope your op goes successfully and you have to keep us informed ok? Good luck!

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Thanks for your fast response i dont understand what people mean by frozen by an epidural i dont mind feeling a bit spacey i have been on max dosage of codine and paracetamol that makes me a abit spacey lol do you know what tubes and stuff i will have in when i come around ? i will keep everyone posted on here and i have not stopped worrying i need to sleep but i cant

I just had surgery two days ago, I was super scared going into it as well. The best thing to do for me was not to think about it and distract myself as much as I could before surgery. Try to get in really good shape, it will help with recovery. Good luck.

I did not use an epidoral, but have been on morphine. I have been using less and less everyday. It has helped me sleep better.

I had open surgery 3.5 wks ago to remove my large bowel, back passage and rectum and feel pretty good. I tried the mobile epidural but unfortunately it only took full effect on one side so I switched to a pump which was not morphine (something similar to epidural drug) I would def give the epidural a go as if it works properly it would of been great.
I was up out of bed for a short time the day after surgery and focused on knowing that each day I would get a bit stronger.
I am very pleased I had my surgery and totally understand ur anxiety I was the same

I am trying not to think about it but i seem to end up watching videos and reading about what to expect and what they will do.Saying that i am seemingly less worried about it all and i think it was the fear of the unknown.
The only thing i still haven't decided what im having when i come around. I am swaying towards having a morphine pump because of many family members experience and also my thoughts. Just wondering if anyone had any thoughts on pain relief ? also will i be in icu or hdu and if so for how long ?
This Thursday i am supposed to be seeing a few people at the hospital for my pre med and to discuss my recovery plans. I will keep you posted. :ysmile:

I would like to chat will people that have had similar experiences if there is anyone that wants to pm me

Hey I had both an epidural and pain med pump. The epidural started to bother me 2 days after I woke up, can't explain it, it just bothered me knowing it was in my back. But only when they took it out did I realize how much it had been masking the pain. It was very effective! But the pain meds were helpful too. I'm surprised they wouldn't have you on both. You are having a major surgery! I'd ask on Thursday if that's an option for you.
Try not to get too nervous or over analyze it, as hard as that is. The months leading up to mine were all nerves. As soon as it was over and I was home, I was so relieved and happy it had happened. I hope this surgery will make a major difference for you!

I had surgery almost two months ago and I was super nervous before my surgery too. They offered me an epidural but I'm terrified of needles and after I saw the big needle, I backed out! I also didn't like that I would have to have it removed a few days later. I did have a morphine pump, which worked pretty well. The pain was mostly just when I moved around and even then, the pump worked well for me. They will probably also give you some additional extended-release type pain meds.

When you wake up, you will likely have oxygen on and an IV in. They didn't start my morphine pump until I was in the recovery room but I was still pretty out of it so it wasn;t bad. You will probably be in some pain until they start the pump if you dont get the epidural. The most painful part for me was when the nurses transferred me from the bed they wheeled me up to my room on to the hospital bed in my room but it only took a few seconds.

I know exactly how you feel. I was super nervous before my surgery too and i was asking a million questions. It's helpful to know what to expect. I'd be happy to answer any other questions you have! Good luck!

I had open surgery to remove a stricture in my small intestine and to repair a fistula 4 weeks ago. Had the epidural and a dilaudid pain pump. For some reason the epidural did not provide me much relief and I asked them to remove it late on the second day. Felt much better without it. According to the docs, I was using the pain pump 5% of what I was allowed. It was discontinued on day 3. For the remainder of my time in the hospital, I was on regular strength Tylenol and 600 mg ibuprofen.

I know most docs don't use ibuprofen for Crohn's, but my doctor said it would just be for a few days. I felt so much better on this regimen.

My biggest problem was an incredibly dry mouth, nausea, and dizziness. All ceased once I switched to Tylenol and ibuprofen.

My advice for you is to let your doctors know if the pain medication is not working, or giving you intolerable side effects. You also know your pain tolerance better than anyone. The docs didn't think Tylenol and ibuprofen would be sufficient so soon after surgery, but it worked fine for me. Don't be afraid to ask for more or less medication to make you comfortable.

You'll do fine. At four weeks, I am back to all activities except for running and sit-ups (not that I did sit-ups before, but I thought about them every day). Ha!

The Dry mouth the day of surgery was THE WORST! I have had cotton mouth and nothing compared to after surgery. It may have been a good thing since it distracted me from the pain. Also, I was apparently a giant douche to everyone after surgery. I was calling everyone out for what they have done wrong, lol.

i went into the hospital yesterday for my pre med and all they did was ask about my health i asked if i could ask any questions she said no she didnt deal with them i could ask them on the day of my op i was a little annoyed because my surgeon said i could ask them yesterday :thumbdown: i have got to have a heprin shot in my tummy the night before and also i was told it might not be my decision well i think it is up to me my crohns seems to be getting worse in the last few days and i just cant wait for my op to get it sorted
what things would you recommend to take into the hospital with me ?

thank you scl and jess can you pm me sometime

stickman7755 said:

The Dry mouth the day of surgery was THE WORST! I have had cotton mouth and nothing compared to after surgery. It may have been a good thing since it distracted me from the pain. Also, I was apparently a giant douche to everyone after surgery. I was calling everyone out for what they have done wrong, lol.

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lol i can imagine me being like that lol and i had a realy dry mouth after i had my cameras years ago :shifty: and plastic taste was terrible

I would bring a laptop with a wireless keyboard if you can, it might be painful to sit up and try and type. I also would recommend getting a stress ball or something like it to work on your grip strength after surgery. Since you are getting surgery on your ab's you will depend on your other muscles post surgery. My back has been really strained after surgery since I'm using those muscles to make up for lack of ab muscles.

Also, bring comfortable sweat pants that have a very loose waist band. And a comfy t-shirt, and a hoody that zips up in the front

I had surgery in may, got it done laprascopically, i hd epidural but they put it in after they knocked me out as I was terrified, it was out by the time i came around. The morphine button made me constantly feel sick and itchy like i had things crawling under my skin, so I hardly pressed it. recovery wasn't long and I feel great now! are you on fb? there are some good groups like coming out of the bathroom, uncover ostomy, ostomy outdoors, united colon vlog. hope it goes well

I brought my laptop, dvds, and books/magazines but I didn't end up reading at all. I mostly just watched TV in bed and occasionally used my laptop. I would recommend bringing chapstick, I remember my lips being really dry for some reason. I also brought slippers and kept them by my bed and used them when I had to get up to go to the bathroom or when I went for walks around the floor. They give you socks but I felt gross walking around the hospital in my socks and then getting back in my bed with them. I also brought pj pants and shorts (since the hospital gowns are backless) but after the surgery, I didn't want anything touching my incision so I ended up just wearing another hospital gown backwards to cover my back.

The more you can get up and walk around after the surgery, the better off you will be. My surgeon wanted me walking the same day as my surgery but there was no way that was happening. Starting the next day, I had to walk around the floor 4-6 times a day. I never wanted to but my family made me and now I am really grateful I did because it really speeds up the recovery process. The worst part is getting in and out of the bed because it uses your ab muscles but walking itself isn't too bad.

Feel free to message me if you think of anything else!

I took an iPad which I used quite a lot. Couldn't seem to concentrate on books. Watched a little TV, took a lot of walks. Once the catheter was out, I was free to roam by myself and even explore other hospital floors.

I never wore the socks in bed (being a Hawai'i girl, we don't wear socks a whole lot and I hate the feel of them).

The Chapstick is a great idea, the nurses brought me Blistex. I also brought my own mini shampoo and conditioner, brush, and minimal toiletries like lotion, deodorant, and toothbrush.

If the Heparin shots are painful for you (they seemed to get more painful each day) ask for an ice pack to use before and after the shot.

Got to go to work. Will pm you if I think of anything else.

The chapstick is a great idea! Hospitals tend to be very very dry. Before I could drink any liquids I chewed gum and spit the saliva in a cup, just to taste something other than water on a sponge.

The blood thinner shots were really painful, I wish I knew about the ice pack. For me, the initial stick wasn't bad but it got progressively more painful. If you are walking around though you probably wont need them for as long since you won't have to worry as much about blood clots.

I was really sensitive to anyone touching my stomach since that's where my incision was so I asked if they could give me the blood thinner shot in my arm instead, which was much better. It still hurt a bit but not nearly as bad as in my stomach. I also brought those face wash wipes they sell at the drug store which made it really easy to wash my face without having to get up or bend over or anything.

They never gave me the option of in the arm. I'm pretty skinny, hence the name, so before surgery the lady said "let's grab some fat so we can give you the shot......oh, you don't have any" lol.

Buckad,
How are you dealing with the stress and anticipation? my wife is going in for surgery soon -- January, I'd expect, but we don't have a date yet. And the stress is killing me. I don't know if we should push to have the date moved as soon as we can because she's getting worse, or pushed off as far into the future as we can to give the meds more time to work.
I can't imagine waiting until the 24th!
Hope you're keeping your mind busy and not stressing out about it all the time!
--kevin

Kevin,
I was dealing with it all very well until new years eve when it was midnight i wet to bed and i was in tears.I've not eaten a lot in thee last few days and i have also had a cold and i think that the anticipation is doing it to me if i could have the operation tomorrow i would i have heard so many great outcomes the main think that scared me was the risk of having a bag but i have met some amazing people and im not scared of having a bag however i dont really want to have one. it really depends what meds your wife has been on i kept an operation as my last resort because my bowel has stuck to my bladder i just said i wanted it fixed and it would never get better without an op im trying not to think to much about it but i keep thinking more about it the 24th seems ages and ages away.

Adam

Well, I hope for the best for you, Adam. Hope you can keep the stress away too.
--kevin

Adam, I had small bowel ressection on Feb-2011, and this was the best thing I have ever done! I had an abcess and a fistula which was leaking out my lower right. I was very sick, couldn't work and did nothing for about 2 months. The epidural was my biggest fear, but I felt nothing when they insert it, they numb your lower back. I was worried for nothing. I had a pain med through the epidural, and dillaudid every 2 hrs, that stuff is awesome! I also had a cath in my penis, which Dr. put in when I was out, no pain, just a weird felling when nurse pulled it out. The nurse had me walking 8 hrs after surgery, so I only got 2 shots for blood clots. I was cut wide open, and no issues healing. My intestines woke up within 36 hrs, and I was out within 7 days, sent home with vicoden, 750, The only pain I had was when I sneezed! I walked every day and healed great. The one thing that hurt the worst was when the nurse puts in your IV, they place tape on you arm and when she pulled the tape off, OMG! I had tears! and I am not a hairy man! so either shave your arm, or ask them to! overall, really nothing to fear, hopefully your healthy, you are young, and your body will heal great! Again, try not to freak and just think how good life will be after surgery! Any more questions, just ask, Billy.

You had asked what an epidural feels like. I haven't had surgery yet for my chrons but i had a C-section years ago. It is when they freeze you and by that it means you can't move or feel anything. The strange part is that I could feel pressure. I could feel them pulling and tugging to get the baby out but I didn't feel pain. I had morphine afterwards and it just made me drowsy...until I would wake up and just be kind of "high"...just like in a daze...until it would wear off and I would press for more and then start the cycle again...fall asleep...wake up dazed...then start to feel a little more pain...but again this was a C-section...just explaining what the meds felt like. I am not far behind you so I hope you will post a lot about your journey when you are feeling up to it! Good luck.

op tomorrow realy scared ill try to keep you guys updated talk soon

Thinking of you xx

Sending loads of luck and healing thoughts your way!...:goodluck:

Dusty. :heart:

I wish you the best on your surgery today! please let us know how it went. I'm having mine on the 27th..

Thinking of you! Good luck today

Hope everything wen ok Buckad and Rain. Keep us posted when you can.
--kevin

Everything will be just fine! Healing hugs!!

I hope all went well to both of you. You will be in my prayers and please update when you feel up to it. Get well soon guys! Lots of hugs!

Thank you people! Everything went well with mine. I'm just really sore. I'm on fentanyl and it helps but the side affects aren't very fun. I have a penrose where I used to have my ileostomy and A pain ball that pumps continuous stuff through wires in my stomach. It's all coming out tomorrow and I'm afraid of how painful it will be. I had my first bm today and it was watery of course but I was actually able to hold it in well to get to the bathroom on time. I'm pretty satisfied other than the pain that radiates from my neck down to my lower back..Is it even normal to have neck and back pain?

I hope you guys are doing well!!! I am almost two months post surgery and I feel much much better. I still have days but they are getting fewer and fewer. Good luck with recovery.

Bubbles

Heya everyone just got home and really happy no pain meds for 4 days and although i was shocked to wake up with a bag im really happy.

I was ment to be in surgery for 1-2 hours and i was in the operating theater for 5 hours because when they opened me up i was a real mess my bowel had made a fistulated mass attached to my bladder and also it was sticking tougher they removed some large bowel and some more small created a ileostomy and repaired my bladder.

The first day i was on around one press on the morp pump every 30 mins then
24 hours after the op i was down to 1 press an hour
Day 2 until day 5 i wasnt on a morphine pump just a shot in the arm at night
Days 5 to now day 10 im on no pain meds at all


Bubbles ileostomy 24-1-2012

Good for you, so glad you made it and getting better. Hope Bubbles behaves in the future! Just be good to you and hope you continue to do awesome! :banana:

Great to hear that both of you seem to be doing ok. Buckad2008.... wow. That's quite a surgery! Glad they got everything and you're doing well.