Scared of everything...wish bravery was sold in jars!

[littlefreebird]

scared of everything...joining the club in 4 weeks!!!

i will be getting my first surgery next month (has crohn's for 11 years).
i'm getting a full panprotocolectomy so will have a permanent ileostomy.
i handled the news ok and i'm feeling less emotional as the day draws nearer.

however the last few times i was in hospital, i had really bad experiences and hated the way things were done, like they would wake you up in the middle of the night and say 'oh just have to give you this injection into your stomach' or 'i need to take some blood' or 'i need to give you this enema and you'll be going for a sigmoid today.' i have to say i'm a bit scared when it comes to needles and just feel in general with the examinations that were done and the enemas etc. i was in so much pain, everything they did was painful. it has made me terrified. i hate the way things arn't explained, doctors come over to the bed, they just write prescriptions for things (horrible things) without even telling me, then the nurse will come to administer it and i freak out!

the thing that scares me most about surgery?.....the tubes afterwards, especially the catheter.

have freaked myself out....i wish i was braver, i'm so looking forward to just feeling well again but i'm terrified of everything that's going to happen until then.

i also worry about what i read about sexual function after the rectum has been removed as sometimes as a complication vaginal nerves can be damaged...i can't find any other information on it other than that statement

 

[DragonGirl]

I know how you feel. Until I was told that surgery was not an option I was terrified that I would need it. I did two scope procedures and the ng tube scared the heck out of me. I had a needle phobia until recently. I have had to do enemas every night and I have given myself injections. In the beginning, before each and every one of these procedures I was terrified. I learned to work with it and I have almost gotten over my needle phobia. If you had told me back then what I would be able to do now, I would have thought you were crazy.
If you are having problems with doctors not explaining things, try asking the nurse why she is administering something. I take pepsid, which they don't give in the hospital, they give zantac instead. I had to ask a bunch of people before I got a satisfactory explanation of why they were giving me a strange medicine. I also got woken up at 5 in the morning for an unexplained blood draw. I freaked out(this was during my needle phobia) full in tears, scared out of my mind, freak-out mode.
At least your doctors are doing something to try and help. In the beginning of my flare, I went to a different GI doc. I still go to a pediatric clinic. My GI doc never answered our calls and he didn't do anything about my pain. It was so bad that we switched doctors. We are even having some pain management issues now. I am sure your doctors are just trying to do what they think is best.
I hope you feel better soon and I wish you speedy recovery from surgery. Good luck!

 

[bruscar]

Hi lfb,

Now wait till i tell ya. You are braver than you think, and without even knowing you i can tell you this . . if i can do it then you definetly can. women are stronger than men, for sure.

I really wish you well and don't be worrying about any needles, two seconds and they are over. obviously you wont have any of the other tests like enemas etc so you will be fine.

chin up and think positive.

big hug

bruscar

 

[Terriernut]

I can understand your fear. It's the loss of control, and I didnt like it one little bit! But I can reassure you about the catheter. They put it in when you're already 'out'. As for removing it, didnt feel a thing. Not to offend a guy, but it was like removing a tampon, simples!

The recovery can be a bit trying if you just want to up and go, like I did, hospitals are torture chambers to me. But read up in the stoma subforum and throughout the forum, and you will get an idea of what to expect.

Meanwhile, welcome to our club!

 

[glum chump]

Hey littlefreebird

I just had surgery a month ago (ileostomy) and have a deep abiding fear of needles (last time they did a spinal tap, I jumped out of the bed totally freaked out yelling I can't do this and was running out of the hospital like a complete lunatic). Your fears totally make sense and I think it's good to consider the fears as you prepare for surgery.

First off, you'll have the benefit of anaesthetic during your surgery, and when you come out of anaesthesia, you will definitely be on strong pain meds. I was on 4mg dilaudid which they were willing to up if I was still in pain. When you're in hospital, make sure to get the nurses to bring your pain meds every 4 hours (or whatever it is) so that if they swing a surprise test on you (and yes, they do!), you'll have your pain meds as back up during the procedure.

The tubes. Misty has said it perfectly. I was terrified of my catheter coming out, but it took less time to take it out than it does to get a blood test, and seriously, sometimes, taking a tampon out hurts more!

They would wake me up at 5:30 to draw blood every morning. Seems that doctors like to see the results before their morning rounds. And at midnight, I would get hooked up to antibiotics. I had my partner get me my alarm clock and set it to 15 minutes before anyone showed up so that I had time to 'prepare' myself for the poke. The nurses should be able to tell you what time they're coming to give needles/meds to you.

As for the doctor's just pushing meds without explanation. That was my experience as well. I would ask the nurses to print me out the information sheet on everything I was taking from the antibiotics to the pain meds. What became a problem was that I had questions of my doctors about my meds, and they wouldn't show up to see me. So I called in the hospital social worker and the Head Clinical Nurse and got them involved. In a short time, all my docs were in the room with me explaining things...

Courage comes from unexpected places and just when you don't think you'll be able to bear something, you figure out a way to do so. Remember, you've had the courage to survive a bunch of things you didn't think were possible for you. Just don't hesitate to ask for pain meds because it's a pretty big surgery you're having.

Stay well,

Kismet

 

[vonfunk]

Got my colon out a week today. Still in the hospital, just got unhooked from the IV.
As far as tubes, yes there will be multiple, you will be completely out and as it turns out there were more tubes than I knew about at first. You don't notice them.

Make your peace with pain killers

As far as sexual dysfunction goes the heavier you are the the more the chance rises. Te risk is the same for both sexes, except with guys it will remove the ability to have sex as opposed to just make it less enjoyable. That was my biggest fear, because I am a tubby bastard. But I think it still works, it's really hard to test that whlist still in here.

 

[littlefreebird]

thankyou all for your words of encouragement i am really feeling better already. you feel so alone going through something like this, these forums are an absolute necessity.

you're right it is the total loss of control that panics me but i'll just have to be on question overload...i want to feel more in control, more aware of everything.

wow jason, who do you feel? how was it getting out of bed for the first time? i'm glad the surgery went well for you.

a big thankyou and hugs to you all for your replies i will have a nosey around the other posts, it's amazing hearing all the stories and bravery of everyone here.

 

[Terriernut]

Luv, I wasnt brave. And I think alot of us were absolutely petrified, at least the first major surgery. It was my first one and I was quaking like a leaf. But I was also close to dead, so there wasnt any other option than to move forward. Once its done, you just have to go with the flow, and look for one better thing everyday. Even tiny things! And you just go forward, all there is to it.

You can do it!!!
:hug:

 

[Grant]

littlefreebird, I feel so sorry for you. But trust me you are tougher than you think you are. This surgery will be over before you know it & your life will be yours again.
Ref sexual nerves I was told the same in 97 & being a bloke was mortified(gender of course doesn't come into it). But dont forget they have to discuss very worse case scenario. The surgeons are extremely skilled & will do everything to minimize risk.
Hope all goes well for you.
Rgds
Grant

1st symptoms 1983
Diagnosed 1985
1997 Right Hemicolectomy & Resection
2002 Laperotomy & Resection
2010 Laproscopic Ileocolic Resection
Currently got yet another stricture.

Been on Azathioprine & Pred
Currently on Entocort 9mg other day
Humira 40mg every two weeks
Calcichew
Pentasa 4gm daily
3mthly B12 Jabs

 

[vonfunk]

Well I'm one week post surgery. I feel pretty good, I'm starting to get use to the new normal. The first time I got out of bed by myself was excruciating. But with that said, it was the day of the surgery and I have an unbelievably high tolerance for pain killers and my attempt was prior to them tripling my narcotics. It was a couple of days before I could get out of bed myself, and I didn't really want to move the first few days so that was fine by me.
Right moving around is more uncomfortable than painful.

 

[DAVI]

I have just read your post and have to say you are brave think of all the time people moan about having a sore throat or man flu.They no nothing about being brave,you do.
To say you are scared is brave.