Don't tell me, here comes the knife

[Sojourn]

For those that have been through this, and other surgeries, it probably doesn't seem like a big deal. But you probably remember when you went through it, that it was a daunting prospect and not something exactly to celebrate.

But the time has come, according to my GI and surgeon, to remove some of my intestine where a fistula has developed and is connecting, and draining, outside of my body following a surgery last summer to manage it. They had hoped that it would close on its own and the resection could be avoided, but it really was an outside chance. The other option would be to try Remicade to see if that would bring closure, but my GI is reluctant to get me committed to Remicade at this point and there's no guarantee it would work. I'm also reluctant, considering the cost and uncertainty of job securtiy, insurance, etc.

So it looks like the resection is going to be the course. The good thing about it is that there's no urgency. The surgeon said I could wear the bandage on my stomach, over the fistula, indefinitely saying that before this type of surgery was common they just cut into people with these types of problems and let them drain. I was kind of surprised that remark. But overall, I do feel well and am not having any pain or significant digestive problems. I'm also on 40mg of Prednisone.

My plan is to wait until next year, when my short-term disability insurance goes into effect at work, so I'll at least have some income coming in during my absence. But in two weeks, I begin to taper the Pred down to 20mg. If I begin having problems during the tapering, I could end up having this surgery sooner than I would want.

 

[Kev]

Hey Sojourn. Regardless of where & what, the concept of surgery is unsettling. That being said, I found my resection literally a walk in the park. Mind you, I didn't have a fistula to complicate things. But it was much milder than other surgeries I have had. I was operated on in the morning, took my first walk with the assistance of nurses that afternoon, my first solo walk that evening. The more I walked, the better I felt. Within 3 days, I was off morphine. I was out of the hospital within 5 days, and off of all painkillers within 7. The hardest part was avoiding laughing, coughing or getting my bandages wet in the shower. That in a nutshell describes my resection experience, nowhere near the nitemare that I'd built up in my head before the surgery. I dunno if you can take comfort from this?
Anyway, all the best... hope the timeframe and plan you have falls into place OK

 

[Nancy Lee]

Hello Sojourn,

I was just wondering why the doctor is reluctant to give you a course of Remicade first in trying to heal the fistula.

I have one or many..not sure which yet, still going through the tests to find out exactly where it/they could be. But my GI says he would try a course of Remicade before surgery.

But, as long as you are okay with it....and there is no urgency perhaps it is the best choice for you.

All the best,
Nancy

 

[katiesue1506]

I'm kinda with Nancy... Remicade did wonderful things for me... threw me into remission... not saying it would definitely help you, but I'm a huge baby when it comes to surgery and would try everything I could before I did that.

Although if you just wanna get it over with, I suppose the resection is the way to go.

I'm sorry to hear of your news though, I hope everything goes okay with everything!!!

 

[Sojourn]

Thanks Kev, for your encouraging words about the resection. It sounds like D Bergy and others also have gone through this without any problems and even benefited from it. It's certainly not like losing a finger, or limb, but I have this strange feeling about losing a part of my body. I'm sure I'll get over it if this indeed is the course.

Nancy and Katiesue, I think the reason that my GI is reluctant to get me committed to Remicade is that he knows my job situation has changed recently and is not exactly stable considering my condition. Being a driver, truck or bus, is probably one of the worst professions to be in with Crohn's as the hours are demanding and bathrooms are not plentiful or always easily accessible. He also knows that I have trouble getting in for appointments because I usually don't know what days I'm going to have off. He said that if I started Remicade I would have to be committed to it, forever, every eight weeks. Now, I don't think I would have any problem getting in for infusions with eight weeks notice to my employer. But if my condition worsens, I could end up in a job that does not provide good insurance, or coverage for Remicade.

But you're causing me to think. I may indeed go for a second opinion. My mother has heard of a GI not far from where I live that is supposed to be the leading GI in the state and she wants me to go see him.

In the meantime, when I changed my bandage today, the seton drain stuck to the bandage and came out of my stomach. Not sure what this means as the drainage seems to come out separate from the seton drain. But when I saw the surgeon he said something about how there was a reason he would not remove the drain. I forgot the reasoning. I hope the drainage will not get into my stomach now and cause an infection.

Thanks you all. I'm really down at this point, angry, and depressed. Tomorrow I'm going to a football game with by brother-in-law who is visiting from Argentina. I think this will lift my spirits.

 

[Sojourn]

Well, had a good time at the football game, which we (OU) won, but after my sister and family went back to Argentina, I retreated into my own world and have not been speaking with anyone hardly outside of my work. I was really ticked off upon hearing about needing the surgery.

I was looking into a second opinion when my incision apparently closed and the drainage stopped. This is not good because the fistula did not close but the incision did resulting in drainage building up on the inside. Now the resection surgery is imminent. I'll be talking with the surgeon tomorrow.

 

[Darkeffx]

Good luck with the surgery. I'll second Kev's opinion...my resection was totally no big deal. The hardest thing was the anxiety leading up to it, but I was out of the hospital and getting back to normal within a week, and ever since I've been in remission.

 

[Sojourn]

Good luck with the surgery. I'll second Kev's opinion...my resection was totally no big deal. The hardest thing was the anxiety leading up to it, but I was out of the hospital and getting back to normal within a week, and ever since I've been in remission.

Thanks. That's good to hear. Blood is coming out of my incision now, waiting for the surgeon to call back.

 

[soupdragon69]

Hey Sojourn,

Keep us posted on how things go in relation to seeing your surgeon. I know its not easy for you of late but you WILL get there and there will be light at the end of the tunnel.

Hang in there - we are all by your side...

 

[Sojourn]

Thanks Soup. Surgery is scheduled for Wednesday. I'll be on fluids tomorrow and drinking Fleet.

 

[Kev]

Hey, wait a minute, wait just one minute.. You are scheduled for surgery on the 31st

Halloween???

hmm, guess it's appropriate. After all, the surgeons will be wearing masks.. ;-)

Anyway, kidding aside for the moment... All the best, got my fingers crossed. Take it easy, and let us know (when you can) how you made out (except with nurses)..

BTW Hey Soup, glad to see you got the avatar pic all straightened out. Very nice!

 

[Sojourn]

:ylol2: I was thinking the same the thing. I'm just hoping that the nurses aren't in costumes. I can imagine I might think I went to the wrong place when I come out of the anesthesia.

I'm drinking Fleet as I speak and go in for bloodwork in a couple of hours.

 

[Kev]

Wellllll, that would depend on their 'costume'.. What nurses wear today just isn't as nice, or even as re-assuring as what their 'uniforms' used to look like. I've seen better 'uniforms' in a gardening centre. I dated a nurse, and she had turfed her old uniform years before. Shame.. I ended up acquiring a new one for her from Fredericks... And, diplomacy precludes me from going any further with this story. But I hope it planted nicer images in your head pre surgery than was there before.. Let's hope that the nurses you encounter measure up OK.

 

[Nancy Lee]

All the best to ya!

"Drinking Fleet"?

Do they really have that stuff to drink...
I always put it in the other end.

Anyway....all kidding aside...we'll be thinking about you and a little prayer sure won't hurt either.

Let us know how you made out when you get out.
I mean with the surgery, not the nurses!! LOL.

 

[Stuffette]

surgery

Hope the surgery goes smooth. I'll be praying for you.

 

[Darkeffx]

Good luck. Let us know how it goes

 

[D Bergy]

One good thing about drinking fleet is it will make the hospital food taste like a gourmet meal.

I am sure it will go well for you. Drop a line when you are up to it.

Good Luck!

Dan Bergman

 

[Sojourn]

Thanks you all. Just a short note as I lost the message I typed, be careful not to hit the "backspace" button when you don't have an active cursor blinking in the writing space.

I'm still in the hospital and should be here for at least a few days. Overall, everything went well as the majority of the surgery was done laparoscopically with minimal incision other than the abscess and fistula area. I'm hooked up to a morphine pump now with which I can give myself a dose every 8 minutes or as needed. I've used it about half as much today compared with yesterday.

I think it has all been for the best. Of course, I won't know for some time how well I am doing as a result. But that is some diseased intestine that can't cause me problems anymore, though, the Crohn's can still come back. I will just hope and pray for a long remission. I'll probably dreaming about food again tonight. 3 days and counting of no food.

 

[Kev]

Hey Sojourn.. glad you are on the mend. Worst part is the hospital stay after. It's amazing how the body bounces back. Your mention of dreaming of food reminded me that pre-op I had no interest in food, yet post op I was totally ravenous. I had completely blocked that memory out till your words triggered it. All of the best, OK

as for the backspace key thingy, if it happens again, try hitting the 'undo' you'll find under 'edit' at the top of your browser screen. It's always worth a try.

 

[KCMike]

Hey Sojourn,

I wish you a speedy recovery and a long remission. The day I was released from the hospital was my worst. They prescribed me some pain medication(Vicodin) to take if the pain was too much. I took one that evening. A big mistake! I didn't eat much during the day(soup and Jello). My body rejected the vicodin and I started vomiting. It hurt so bad. From that point on I just rode out the pain. I really missed the morphine at the hospital. I can see how easily one can become addicted to it. Anyway, I was much better by the next morning. I could feel all of my "guts" repositioning. It was a bit uncomfortable. The pain gradually subsided.

 

[Sojourn]

Thanks, yeah, I had to drink Fleet as well as put it in the other end for pre-op. I basically resigned to thinking of myself as an animal going in for some kind of procedure as I also was given some special soap to wash with the morning of.

I will try the "undo" button next time, thanks for the tip. Also thanks for the clue about the body rejecting pain medicine when one gets home. My doctor mentioned something about this but I wouldn't have thought as much of it if it hadn't been mentioned here. I will make sure not take any pain meds unless I absolutely have to.

I just got home tonight and am hungry for all my favorite foods but will be playing it safe for the next few days. The worst part was in the hospital the last few days waiting for the intestines to "wake up." I never imagined having a bowel movement or passing gas could be such a joyous or momentous occasion. But that was my ticket out of the hospital. The surgery went very well from all indications and the surgeon seemed to be especially proud of the incision whenever he came in to look at it. I do commend him for doing it as minimally invasive as possible.

I hardly ever do any lifting on my job, but the requirement for release is 50 lbs, so it may be some time before I can get back to work. Otherwise, I could be back to work in a couple of weeks. I'm going to try to convince the doctor that I will not lift this much and see if he will go ahead and give the release in a couple of weeks. Yet, I'm not going to hurry anything and will take what time I need to recover.

Thanks again for all the great support I've received here. If anyone has any questions about resections, I'm one more you can add to the resection club here.