TO HAVE OR NOT TO HAVE THAT IS THE QUESTION?

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stephx
Regular Member


Date Joined Oct 2008
Total Posts : 88
   Posted 10/3/2008 2:46 PM (GMT -7)   
shocked   Reading some of the things on this forum have really freaked me out. I'm due to go into surgery Tuesady, and at this point don't know what to do? I'm supposed to go in for an ileocolectomy and a resection, but most people say that they form hernia's or either they have to go back in to repair the leak, and that they were near to death. This freaks me out. I mean my surgeon says that he has done over 300 of these operations, but when my father asked about the success rate he gave us statistics. Like 1 in 100 people may have complications or death. Then he was like the surgery has a 90% and greater success rate. I mean I know that I'm losing blood from this spot, but I'm not really in any pain only like when I eat. I only wiegh 110 lbs but before this desease was never really big anyway. I'm just really freaked out from the thought of surgery. At this point I don't know what to do, my parents are pushing me to have the surgery, but I'm very skeptical, they think I would benefit from having this done, but I'm really afraid of surgery. I can tolerate most foods like dairy, but I know to stay away from peanuts and sneaker bars., I can drink ensure without naseau, I mean I rarely have it, most times I have it is like when I go back into a flare, but my flares are mostly minor to medium range. The docs say that I'm anemic and would benefit, but once again I'm afraid of the complications that could come from this surgery. I just want to live a normal life. Docs always say that the disease can be treated but, they don't mention how drastic the outcomes can be, if only the docs really knew. Could anyone just reassure me that this surgery isn't that bad. I'm even afraid of the anasteshia that they will give me to knock me out, and I here that they put an epideral in as well, wow what the.... I mean what am I in for. My surgeon says most people stay in the hospital five days after surgey and many don't lose that much blood from it. My surgery is supposed to be an 1 1/2 hours in which the doc says, is this true. This surgeon has 23 years experience should I go for it. I mean I've been prayin alot. My surgeon also say that most people who get it done go into remission immediatley, and if you take ur meds has a 50% chance of it coming back. But i personally think that if you take too many meds right after than it can give you the crap back itself, by just taking the meds. He said if I didn't take the meds than it was a 75% chance that it would return. I mean so many statistics. Could some body  who has had this surgery done please, give me some advice. I am freaked out! REALLY THINKING about BACKING OUT!

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/3/2008 5:54 PM (GMT -7)   
Hi The epidermal is nothing to worry about it is just little a small IV not in the bone or anything just in the upper shoulder skin like a small IV I didn't even feel it, it just releaves the pain from the surgery. Did the DR' say you would need one? Honestly it really isn't that bad they keep you pretty comfortable. I feel alot better after having had mine and lots of us do. I was afraid before too, crying when the Dr' told me I needed surgery but once I came to peace with it I was ok. My GI said about 80% of people go into remission for quiet awhile. I cain't remember how long it took . I wish I could say more to help but don't let others stories scare you and the surgery is your decision not ours. If you have a bad spot that won't heal it might help you your Dr. seems to think it will. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


stephx
Regular Member


Date Joined Oct 2008
Total Posts : 88
   Posted 10/3/2008 6:33 PM (GMT -7)   
He never said anything about an epidermal but I see that most people on this forum had one. These are the facts that he gave me. 1. ileocolectomy, 2. It takes him 1 1/2 hours, 3. open Surgery, 4. General Anesteshia, 5. Many people don't bleed that much from the surgery so no blood transfusions, but in my case I'm anemic he will get my blood type if he saw I needed it after surgery, 6. 5 day hospital stay. These are basically all the facts that he gave me.

patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 10/3/2008 8:44 PM (GMT -7)   
Steph,
If you're having this much anxiety over the surgery, maybe you should get a second opinion from another GI/Surgeon... is that an option? I know they might hassle you since you'd be canceling your surgery on Tuesday, but it is YOUR body, and you have a right to change your mind. And, it might only be a temporary posteponement... you might get the same answer/solution from the second doc, but maybe the second doc could answer your questions better and make you feel more secure with your decision...

Whatever your decision, you should NOT feel rushed about making it, nor should you feel so much anxiety about it. All surgery is reason for some amount of anxiety - but not THIS much. I so understand where you are right now... and I hope that you'll give yourself the time you need to make the right decision for YOU.
((hugs))
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Currently running on Humira and Hope.
(miscarried at 13 weeks, now waiting to heal before trying again)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson


wicked wendy
New Member


Date Joined Oct 2008
Total Posts : 18
   Posted 10/3/2008 11:42 PM (GMT -7)   
rolleyes  i had the surgery in feb and was just as nervous as you it does not help i have panic attacks but it was one of the hardest things i have done in my life.  as for pain there is not much they give you good drugs. i had complications of the wound not healing and had to be in hospital for 3 weeks!!! it was 3 months until i was back at work, on the flip side i am pain free for the first time in 8 years. turn every challenge you face with chrons can be complicated but i believe we are not given anything we can't eventually learn to deal with. oh and by the way the scar is pretty Knarley skull

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/4/2008 4:16 AM (GMT -7)   
Hi one and a half hours isn't long I waited about a hour when my kid had tonsils out. They have blood ready for everyone but I am glad that you won't loose anymore blood as you are anemic now. Have you had any surgeries bafore?lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


stephx
Regular Member


Date Joined Oct 2008
Total Posts : 88
   Posted 10/4/2008 3:15 PM (GMT -7)   
This is my first surgery and really don't know what to expect. When they put you to sleep does it fell like you wake right back up?

stephx
Regular Member


Date Joined Oct 2008
Total Posts : 88
   Posted 10/4/2008 3:16 PM (GMT -7)   
This is my first surgery and really don't know what to expect. When they put you to sleep does it feel like you wake right back up?

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/4/2008 5:46 PM (GMT -7)   
Gee I think it sort of is like when you go to bed and wake up in the morning . How old are you if you don't mind my asking in your teens or twenty's . They put a IV in my hand and some meds and I was out like a light. Did you have a IV before? lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 10/4/2008 6:15 PM (GMT -7)   
Stephx, you know sweetie, everything always sounds worse than it really is. The info you doc gave you is basically what we were all told
before surgery. Just remember you will be sound asleep, you will have no memory of your surgery. You will wake up, like you've had a long
sleep. You will have some pain, but pain management is high on their agenda, they will not leave you in pain, all you have to do is tell them...

Remember, once this is done, you may start to feel a whole lot better than you have done...
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis
B12 Shots bi-weekly

Laughter is the brush that sweeps the cobwebs from our hearts


kimberlayn
Regular Member


Date Joined Jul 2007
Total Posts : 239
   Posted 10/4/2008 6:41 PM (GMT -7)   
I had pretty much the same surgery a year ago. It was the best thing I could have done. Even though the disease has come back, while on meds, I feel so much better. A year ago I could barely walk up the hill in front of our house and now I walk 2 miles every evening. I look at it this way: don't have the surgery and be sick and miserable until you end up having the surgery anyway, or have the surgery now and start feeling better in a couple of weeks and deal with whatever happens when it happens later. The surgery itself isn't bad, they knock you out and if you ask for it they should give you something before they even wheel you into the operating room. The epidural is nice because it provides 24 hours of pain relief and it works very well! You won't even know about it, they do that after you're asleep, and its done in alot of surgeries. After that you will probably be on a pain pump for awhile, where you control your own pain relief. You will likely have a catheter in for a day or two, but that can be a blessing because you won't be getting up for the first day. I woke up in recovery for a few seconds, but didn't wake again until I was in my room. All I did was sleep the day of surgery. My surgery ended up being about 4 hours, it was supposed to be less than 2, but they found a mess in my intestines, fistulas they didn't know were there, and ended up removing more than was planned. I have an 8 inch scar but its going away and I haven't treated it with anything other than cocoa butter. I hope this helps you understand a little better what is going to happen. It really isn't that bad, you just have to lay back and let the surgeon and his nurses do all the work. Good luck and I'll be praying for you.
diagnosed w/Crohn's 11/06. 34f with 2 boys, a lovable dog, and a wonderful husband. 150 mg Imuran, bentyl, entocort, vicodin as needed, metoprolol for orthostatic hypotension and heart palpitations. Bowel resection 9/07. Active disease back, darn it 8/08. 11 year old son with IBS-C, on Bentyl.


wicked wendy
New Member


Date Joined Oct 2008
Total Posts : 18
   Posted 10/4/2008 7:46 PM (GMT -7)   
turn  i was scared of surgery too and if you had told me a year ago i would voluntarily have surgery i would have said ur crazy.  but now it is not so scary as i know i will be sound asleep and i don't remember getting my epidural even though apparently i was awake but on a really good relaxing cocktail yeah
30 years old diagnosed august 07. bowel resection in febuary dehissed wound. absess drain in july 08 waiting for seton drain.
meds : mercaptopurine
          losec
          fluoxitine
          metronidazole
and lots of supplements
and i live in new zealand


stephx
Regular Member


Date Joined Oct 2008
Total Posts : 88
   Posted 10/4/2008 9:25 PM (GMT -7)   
I'm 21 years old. I was looking forward to life, and still am. Wow it looks like I'm in for a long battle with this disease. Where did this come from. I mean it started out by me having a stomach ache in the middle of the night every week. Then it was twice a week. Then hurting while eating. Someone please find a cure, this disease as got me terrified. I never been cut open. My doc insured me he'll make the cut small as he can due to my size, but being cut open is so traumatic the the mind, anxiety sets in.

stephx
Regular Member


Date Joined Oct 2008
Total Posts : 88
   Posted 10/4/2008 9:27 PM (GMT -7)   
The catheter sounds uncomfortable to me, does it hurt while in or when it comes out?

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/5/2008 5:20 AM (GMT -7)   
Hi No it does not hurt being put in or taken out. Doesn't hurt while it is in either. I had mine in for a couple of days it just keeps everything running out and you don't have to go pee which saves bathroom running until you get walking better . lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 10/5/2008 5:39 AM (GMT -7)   
Hey stephx, sorry you're going through this. Don't worry too much about the surgery. I just had one this past summer and it was not as bad as I ever would have given myself stress over. You basically get really sleepy and then wake up right after. Everyone will tell you that(I know they told me that) and it's not untrue at all.
The catheter is a little uncomfortable when they put it in and take it out I will admit. I really don't like them but that's because it is a rather awkward placement in itself and it does sting a small amount and very briefly(when they insert and take it out). But just make sure to relax once you have it in or basically it makes you want to urinate all the time so give in to that sensation so to speak and you'll be fine.

If you say you really don't feel that bad and you are this hesitant then maybe you should seek a second opinion and/or try getting better through medication and diet? Keeping in mind that some medicine will not yield any results for months after you start taking them..
Still, also given the possibility that those are words that came for the very fact that you ARE hesitant, should you decide to go through with this, remember that surgery is not bad at all. You seriously will go to sleep and wake up just like that. The drugs they give you beforehand make you feel pretty nice too heh...not that that matters hmm.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone(down to 10 mg), pentasa, bentyl as needed, prilosec, tandem plus, humira, and good probiotics
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
http://weblog.xanga.com/harlequin_garret

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