Abdominal surgery - no bag

[LOSTnut]

Hello Everybody,

I haven't been on the forum for quite some time because I somehow always felt like an impostor because many of you are worse off than I ever was -- well, until recently. Now, I am at a loss and call on the combined experience that any of you might have, although once again it seems that I am not the worst case around.

I had fistula problems until last July, at which they somewhat subsided with the help of Cimzia. However, at the end of November the fistula came back with a vengeance and it was already decided in July that if it comes back it would have to be surgically removed. Within that time frame it seems that parts of my large colon got infectect, obstructed and whatever and as the time of surgery approached nobody could really tell me what would need to be done once I am cut open and the surgeons could actually see the extend of the damage.

I was operated on on Dec 23. Surgery lasted approx 3 hours and I was told that a small slice of the small bowel (fistula) and half of the large bowel (transversal and sigmoid) was taken out, good ends were plugged together and everything will be good.

Today, I still feel like the day after surgery and that nothing is progressing in the right direction. I am currently on 1 Prilosec, 2 Aza, 40 mg Prednisone and Oxycodone to control the pain because the 2mg Dilaudid didn't do anything to help with pain management. My stomach is bloated and I am not hungry or even have the desire to eat, nothing sounds good. Bowel movement is present, passing gas is ok but nothing really provides any kind of relief. I drag myself from the bed to the couch in the morning and fall back asleep until early afternoon. Then, I usually manage to be able to take a shower only to be completely exhausted again. I try to do things and mentally I can and want to but every time I want to take action I feel like blahhh .... and let it go and sleep some more.

Is this normal? None of my doctor's really can tell me what to expect only that it is going to slow. Is there anything you did or can suggest that makes me go forward instead of going forward and then 3 steps backward?

I am getting really depressed and scared for my job, which of course doesn't really help and I am at a loss of what to do, i. e. giving in and let my body rest or push myself despite the pain.

The only other thing I was told was that it can take WEEKS until everything has adjusted, which raises the question -- how many weeks are we talking? I am now nearly 2 weeks out of the hospital and there is hardly any improvement in the overall condition and it seems the stomach with heartburn has actually gotten worse since the release.

Any help would be greatly appreciated.

Thanks for reading!

 

[CDDad]

Wow - sorry for your troubles! Here is what I went through - but everyone is different so not sure it if matters. During my 7 days in the hospital, I felt like crap the whole time. Finally got out and begun to feel better and started to eat.

So hopfully you start getting better any day now. Maybe just give it more time - that is a big operation. And surgery does make you tired for months after.

You might want to think about getting of the Oxy. Nothing good comes from these narcotics and they might be causing some of your issues. Maybe experiment if tylenol will do the trick.

Good luck on your recovery!

 

[LOSTnut]

Hey CDdad,

right now pretty much everything matters.
I felt good in the hospital post-op and things seemed to progress in the right direction. I was excited to get out and get home and move on with my life like everybody promised me I would. But, I am still in a lot of pain and cannot imagine being without the painkillers right now. I am trying to take the least amount and definitely hated the Dilaudid that caused to have weird dreams and feel overall drugged. The Oxy seems to do a much better job.
My main concern is the eating part because my stomach is still so bloated and I really have to force myself to even get down some Ensure to make sure that the bowel movements continue.
The doctor told me to alternate with Motrin and I will give that another shot.

thanks for any hints and tips. Right now I am wide open to any suggestions that comes along and gets the stomach gas going because it seems to me that that is the main perp.

Glad to hear that you are doing well. I read all your updates on the post-op and was really happy to read how you are progressing.

 

[CDDad]

Dilaudid did the same to me and worse. Weird dreams, hallucinations, extreme smell chemical sensitivity. Just nasty to get off. The oxy is good but don't get hooked!

If you were in the hospital, they would probably want to insert an NG tube to drain your stomach. Did you have one in the hospital? Does the bloat go away if you don't eat for a while? Does it come back right after eating?

After my surgery, I just ate whatever my body (or brain) wanted. If it wanted chocolate donuts, I ate them. Canned ravioli, you get the idea. I've cleaned up my diet now, but back then I did not care.

You being bloated makes me think one of two things: either there is some blockage in your bowel going on, or it's just still early and things have not fully "woken" up yet.

I hope it's the 2nd one. Just give it some more time, try to relax and get as comfortable as your can.

 

[tannersmom]

I am wondering the same thing as you how many weeks???? How long???? My 11yr old son had all of his colon removed except for maybe 10 to 12 inches and then the small intestine connected to that on December 9, 2010. Well it is Jan 11 and he is still going to the bathroom alot 6 to 7 times and up. He is pale, dark circles under his eyes and can't sleep at night for making so many trips to the bathroom. Now this isn't every day but most days. He goes for his follow up with the GI and Surgeon this Friday and I am worried they will put him back in the hospital? Are things ever going to return to at least semi normal?

 

[Guest]

like most things where Crohn's is concerned, post-surgical healing time can differ greatly from person to person. i've had 6 abdo ops, and each time it's been different... i do remember writing a very sad poem after one operation, and writing "six weeks and i'm still in pain".... so that might give you a guideline.

it's not just the bowel and muscles that have to heal, the nerve endings are the pain messengers, and they take the longest to heal.

i would try and build your strength and appetite up with good nourishing soups, and remember that some pain meds can slow down your digestion - i'm not suggesting you reduce these meds, just bear that in mind..

if you think there is a real problem, and/or you get other symptoms like a raised temperature, make sure you tell someone.

 

[CDDad]

Hi tannersmom,
I'll put my comments on your other thread so we don't hijack this one.

Lostnut - I hope you're doing better!

 

[LOSTnut]

well, the same day I had to go back o the hospital and emergency surgery because the resection came undone. More puspockets, more taking out, bag for the next forseeable months to heal the infection and get ready for resection again. currently, still in the hospital learning to walk again and support the extra fluid ... never knew one could feel so weak and helpless.

 

[Nyx]

It gets better, honest! And you'll get used to the bag. I found it felt heavy at first, but that feeling goes away. You'll barely notice it's there. And, as an added bonus, you don't have to run to the bathroom anymore!

Good luck on your recovery, hopefully this is the last of the surgeries for a while.

 

[LOSTnut]

thank you, nyx -- i sure hope so. it sure was devastating ending up back in the er after being discharged and supposedly on the road of recovery

Onward and Forward!

 

[CDDad]

Hey Lostnut,
What you wrote about feeling so weak and helpless reminded me of the way I felt after my surgery. I was in the depths of despair, and Nyx gave me the same advice and she was right. I had my surgery last April and in Dec I ran a half marathon. So all things are possible! Good luck and keep recovering!

 

[LOSTnut]

Well, I can already say that this time it feels a whole lot different than after the resection. this time it feels "right" and like moving in the right direction, which is a relief in itself and I can actually see my own progress.
Moving on to the next step of the diet .. full liquid with the mystery pureed soup

 

[Nyx]

Don't you just love the mystery pureed soup?? It's always brown...lol

 

[LOSTnut]

...and somehow it always tastes like split pea ...

 

[LOSTnut]

It seems that I have recovered enough for the hospital to consider another discharge within the next couple of days. I have home health care set up to help me along at home because walking is still somewhat slow going and painful .. but getting better. Had already two accidents with the stoma leaking and need to be better prepared when at home, I guess. Pain is doable as long as I follow my body's suggestions. Not sure what to expect when at home and the hospital amenities like electric beds are no longer available to make life a bit easier.
Any suggestions? Naturally, since the resection came undone I am a little apprehensive of putting too much pressure on any parts although I am told that nothing can happen with the bag. Is that true?