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pains post laparoscopic colectomy with ileorectal anastomosis surgery

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Posted 2/17/2013 3:46 AM (GMT 0)
I had a laparoscopic colectomy with ileorectal anastomosis surgery (no ostomy bag – small intestine is attached to rectum) at the Mayo Clinic on January 18th for slow transit constipation. I was suppose to be in the hospital for 1 week and ended up there for 3 weeks. I formed an ileus.. the most pain I have ever felt in my entire life. I was on decompression tubes.. one in my nose/throat to my stomach and the other inserted in my rectum through the small intestine until my body could do things on it’s own. Before the tubes I was vomiting bile. I was on morphine drip and it still was not enough for the pain. It has been aweful.

Now I am home and no more narcotics.. just tylenol which to me does nothing but I understand that the narcotics are not good on the stomach and will slow down my process. Did anyone else form an ileus? The surgeon told me that it happens to 10% of people and that the type I had was very rare. He also scared me when he said there was no guarantee it would not come back later on.

I also formed a blood clot in my liver so now I am giving myself Lovenox shots in the stomach every morning. I go to a doctor on March 9th to start coumadin pills. Because of this I had to stop my birth control. They believe it could have contributed to why I got the blood clot during surgery.

I am going more frequently (which is great from never going at all or feeling like your being ripped apart when you go) but because I am still on the liquid/soft food diet the bm’s are also liquid. From hearing other people’s stories I am surprised I do not got a million times a day. How much I go is pretty tolerable. I am behind as far as food.. I should be on week 4 introducing foods etc but instead I am only considered a week into things due to the ileus. It was like I had to start all over from the beginning.

Now its a matter of trying to deal with these pains and these cramps whenever my bowls decide to move things along. Did anyone else experience these cramps? They are aweful. The doctors say its the small intestine trying to figure out what to do, moving things along etc. They also told me that if it’s making noises, gurggling and moving that is a good sign that they are still working. It might be a good sign but its painful and keeps me up at night. Way worse then menstrual cramps. The other thing is they get worse when I lay down. So this makes going to sleep or taking a nap to get some energy very hard to do. I get them when I sit and stand up but they seem to be worse when I try to go to bed. and lay down.

I also getting a shooting pain whenever I pass anything that is not liquidy.. like if my bowl has any bit of substance to it I get this shooting pain in my lower right abdomen. Anyone experience this? Doctors say its because my body is healing. It just makes me nervous as I really am scared of the ileus returning. They told me as long as I am not vomiting again, that I am passing gas/bm and do not have a fever that I am ok. I just hope to hear from someone that has had this after surgery and can tell me it will go away and how long it took for it to subside.

It will be 1 month since my surgery on Monday but technically since I formed the ileus and got readmitted to the hospital I was not released as ok until Feb 5th

Just curious if anyone else experienced anything similiar?
Posted 2/18/2013 2:09 AM (GMT 0)
Ng,
Yup, what you are going thru is normal :) I had a lot of the same thing when I had my surgery a year ago.. i know that is not what you want to hear, but it is true. SO lets address all this,
1~ Food: take it easy, and go with easier to digest stuff. I actually found junk food to be easoer to process as it takes less to break it down. I have survived on chips and chocolate for a year. Any raw fruits and beggies will come out looking like they did when they went in, so be careful there. Any seeds, or skins will be harder to pass thru also.
2~ Sleeping, try on your side with a pillow or stuffed animal wrapped around your belly, that worked great for me!
3~ One month out, you still need a lot of rest, so sleep hen your body tells you it needs it. Youwill realize that eventually you have less bad days and more and more better ones.
Good luck, we are here if you need us!
Posted 2/18/2013 2:13 AM (GMT 0)
Liquid...i forgot, LOTS of liquids.. it is much easier to dehydrate now, so really PUSH fluids.. I had a hard time with that, but it is imparitive that you do it.
Again, try a stuffed animal or a pillow wrapped around your belly when you lay down, it does help. I had one inthe hospital too, my mom got me a monkey that I tucked around my belly, a slight bit of pressure usually helped with some pain...and light massage helps :)
Posted 2/18/2013 4:33 PM (GMT 0)
You know I started to drink more water yesterday .. like made it a point to drink some even every time I woke up in the middle of the night to go to the bathroom and noticed the cramping was not as bad as it was the night before. I still have the cramping but it was not as often. I also made sure not to eat any dairy yesterday so not sure if that helped. So does becoming dehydrated increase cramping?

I have a body pillow that is my new best friend in the bed ha ha. So I do that already. But its great suggestion and especially if others on here don't know to do that.
Posted 2/22/2013 1:52 AM (GMT 0)
so glad to hear you are feeling a bit better..I wish i could have put things in a bit more perspective for you... think of it like this, if a "normal" person has to drink 64 ounces of water a day... we need to almost DOUBLE that. That has been the only way to not be behind the 8 ball when it one to dehydrating.. and avoid carbonation!! I find soda can make you hurt for days after drinking it! Just some other tips I wish I had out of surgery.. let us know how it goes!
Posted 2/22/2013 11:56 PM (GMT 0)
I am having this done in 3 weeks because I have Lynch Syndrome, which increases your chance of colon cancer to around 80 to 85%. My brother got colon cancer last year and had it removed, and some of his colon. I tested positive for Lynch with a genetic tester, and had a colonoscopy. They found 2 polyps, one non cancerous, and another pre cancerous with high grade dysplasia. The surgeon, geneticsist, and the doctor who did my colonoscopy all strongly recommended full colon removal with no bag(if the surgery goes as planned).

I am terrified of the surgery, the recovery time, frequent BM's, and my diet changing. I also lost my job back in January, and I have had 2 offers this month, but I don't think I can take them due to the horror stories I have read everywhere online about the pain, the recovery time, running to the bathroom so much, etc...

The surgeon said 2 weeks to get back to work and 6 weeks to get back to normal. Can anyone share good stories about having this done? I know my health is more important than any job, but it's hard on my wife with this strenuous medical condition of mine, and my unemployment going longer than I want to.

When I get it done, I just hope I can get back to work in less than 2 weeks and start working hard, or is it the pain and BM's that they don't recommend heavy lifting, etc...

Thanks for any help during my rant, and for quelling some of my fears about this whole ordeal!
Posted 2/23/2013 12:03 AM (GMT 0)
I was told 1 week in the hospital and 6 weeks recovery to go back to work by my surgeon. I had complications that landed me in the hospital 3 weeks which lead me to push my recovery out 2 more weeks off of work. I go back on March 18th and was suppose to go back on March 4th
Posted 2/23/2013 1:25 PM (GMT 0)
Well, welcome, and first and foremost, thoughts and prayers for you..NOW, let's put some of your fears to rest..
1~yes, you will run to the bathroom A LOT during your first month. BUT, it will take you less then2 minutes in there, and that includes handwashing!! :) That is the great thing about everything just kind of falling out..
2~Buy a GOOD SOFT toilet paper.. I am all for scrimping and saving, DO NOT scrimp or go cheap on your toilet paper. Honestly..it is not worth it.
3~Get pads for your pants, you will leak a bit..They make a kind of pad for men that is for incontinence, it is shaped like a jock, and it will kind of curve around your bottom..I found I didn't relaly randonmly leak though. It was more like when I lifted something heavy, or sneezed/coughed..that kind of thing. Or bending over, like to tie your shoe..
4~ You do not mention what typr of work you do.. is it in an office setting? or what? uumm, I found that a couple of things helped me. Talk to your boss. Keep him/her in the loop. How much you tell them is totally at your discretion, HOWEVER, you can keep it simple for both of you. Make a list of what you had done, meds you are on, who did yur surgery..all that kind of info. Leave it in a place at work that you, the boss and maybe a couple of close co-workers know about. That way if there is an emergency wihth you, everyone will know where to find the info, and what they can and can't do to you medically..Also, I told my co- workers, that I had to have surgery for a stomach disease and do not have control over much anymore, so when the feeling strikes, I HAVE to go. That way if we are in the middle of something and I suddenly jump and scoot out quickly, you will know why. AND, that while it is a grand gesture to share home made goodies with me, I can't have them..and I wnated you to know that up front so you arn't offended if I repeatedly turn down food sharing offers...
5~ You will get to know the rythym of your body. Like how long it takes to have a bm after eating and all of that stuff..so you'll be able to judge your travels and such by that. For instance I know after a cup of coffee, I have 15 minutes until all hell breaks loose! So I know to prepare to be near a bathroom at that time..
I really hope these have helped you, if you have any other questions, please feel free to ask!
And activity is important too... baby steps at first..walk a lot...I have not tried bike riding yet..so I can't help you there. I did decide to get a tractor seat type of thing for my bike, just haven't had the time..
My email is on my file..feel free to ask questions or concerns.. good luck :)
Posted 2/24/2013 1:52 AM (GMT 0)
Thanks for your help! I am in retail, but was laid off last month so it's a lot of walking and maybe lifting. Do you think 2 weeks after the surgery is enough to get back to work? I am scared about the frequent BM's and leaking!! cry Not fun.

How long is it before you get back to regular BM's and diet? What is the pain as well when the operation is done and recovering at home? Sore muscles? He said I can get back to work in 2 weeks. I am finally having people call me now for interviews, I just hope they will let me take 2 weeks off! The doctor said he is going to try lapripsopically and not open surgery, and I pray that no bag is needed afterwards.

Post Edited (PWC1970) : 2/23/2013 6:55:00 PM (GMT-7)

Posted 2/24/2013 1:53 AM (GMT 0)
I was told 6 weeks and then go back to work. I ended up having to take off an additional 2 because of my complications. If you are getting FMLA to protect your job while you are off I suggest asking for more time off just incase. FMLA can be a pain. My surgery was on Jan 18th. I was released from the hospital on Jan 25th.. was readmitted via ER/ambulance on Jan 27th and released again on Feb 5th.

So recovery wise I am technically 1 month post op but add on 2 weeks due to the complications that set me back some. The ileus I formed after surgery was the most pain I have ever felt in my life so I was on a morphine drip until they could get it all fixed for me.

For me right now my biggest complaint is the cramping post surgery.. I can handle the acheyness, the special diet and the weakness but the cramps is what is getting to me the most. I have had no issues with my lapro scars. I had 10ft of large intestine removed too. I have had some soreness where the scars are but they are healing without any issues.

Post Edited (ng1031) : 2/23/2013 7:00:02 PM (GMT-7)

Posted 2/24/2013 9:19 PM (GMT 0)
Thanks for your help, are they any good stories from anyone that had this done? :)
Posted 2/27/2013 3:04 AM (GMT 0)
PWC,
Absolutely! I love my surgery.. I have had other issues, but not all related to this. As far as work, it depends again on what you do..if you sit at a desk all day, then you should be able to go back fairly quickly. As for lifitng, NO NO NO... not for a while anyway. BUT, I was also cut wide open for my surgery. My large intestine died, and I had to ahve a hsterectomy at the same time. So I also had an epidural for 3 days post op :) And unfortunately, when I got home I got food contaminated with wheat ( I have celiac too!) and because of the nature of the surgery, it shut down my digestive system completely..so I was back on the hospital for 3 weeks intil it all started working again.
Now, this is not meant to discourage you..honestly, we are all different, and we all react differently to the surgery. One thing I can tell you, is if they offer an epidural TAKE IT!!! They put one in pre-op, but for some reason, it stopped working and they took it out.. and just tried a pain pump.. (BAD IDEA), so they had to put epi back in in post-op..BEST THING EVER!!! It truly gave everyhting a chance to settle back down and wake up on its own time..and I found that when I was discharged, i didn't even fill the script for pain meds they gave me.
Other things I suggest, again, wear a pad for a month or so until you are aware of your "leakage" issues..(although, I can go to the bathroom now and sometimnes not even realize I am passing stool too, so for men I strongly suggest you sit to urinate for a while)
Get a good body pillow, or 2. One to go under you belly for support, and one to go under your back.. these are VERY helpful. I even had a sutffed animal in the hospital with me that I used for belly support.
You will be stiff for a while after wards, and everyone reacts to anesthstic differently..so becareful..
DRINK a LOT of fluids..seriously, before surgery, find yourself a REALLY good insulated cup that holds like 32 ounces or so, and get SEVERAL.. you will need to really up your intake of fluids. Dehydration can be a big issue with us. Be especially careful when you have the flu or are sick.. this can put you behind the proberbial 8 ball really quickly..
Sorry, I am rambling... I hope all this helps.. but truly, this was a great surgery for me, it gave me back my life in sooo many ways!!!
Good luck, if anyone wants to chat more, please feel free to email me :) Best of luck!
Posted 2/27/2013 3:17 AM (GMT 0)
PWC, sorry, just re-read you post.. retail should not be too bad. But no lifting for a bit..remember, they are stitching back to gether your bowels.. not something you really wnat to strain and tear apart. For me I think it was an 8 lbs limit for 6 weeks (roughly a gallon of milk), and then it wasn't too bad. IT allows for stuff to heal, but also with strain comes leaks. :/ and NOBODY wants that! I also suggest a change of clothes you keep at work. Just in case.
Your poor wife can commiserate with my hubby :) hahaha, he has been thru so much with me, that honestly, I keep telling hinm I expect to get the mail one day and have it contain a bullet from his insurance agency telling him to just shoot me, it would be cheaper for them!
As far as "regular bms", that is different for everyone too. For example, my "normal" is 7-8 times a day. When it is less, or they are VERY well formed, I know I am getting dehydrated. and increase my fluids promptly.
Food, take eating slowly, listen to your body.. one of the things my doc said was to go wasy on raw fruits and veggies as they WILL come out liiking like they went in.. and they do, even a year later! I do see them as more reduced fi you will, but it is still obvious what they are. Last week when I had an orange and it came out in slices or sections, I was a bit concerned, but then I had all kinds of other non-realted stuff going on.
Popcorn and corn in general are good to stay away from for just a bit too.. they are pretty hard to process..Stick to easier things, for a bit ( a week or 2), and your body will let you know when it is ready to proceed.. and a dietician can help a lot in that area.
SOrry, rambling again.. hope this answers most of your questions and concerns...
again good luck!
Posted 3/28/2014 12:06 AM (GMT 0)
I am just about 4 months out still having a lot of diarea and gas I take lomodil ammodium and colaic I can not put on any weight it just keeps falling of in the beginning I was about 145 now I am 112 how long tell I get to my normal I know I am always dehydrated just want my life back and the things I use to enjoy
Posted 9/11/2014 10:37 PM (GMT 0)
Hi,
I just found out today that I am going to have to have a colectomy with ileorectal anastamosis due to ischemic colitis and diverticulitis. I am just beside myself. I am a nurse but never have worked with GI patients. Is a normal life possible? If you all don't mind me asking, will I be able to laugh, sneeze, have sex without an accident? Any help and encouragement will be most appreciated. THanks BD
Posted 9/12/2014 3:35 PM (GMT 0)

Bitzidee said...
Hi,
I just found out today that I am going to have to have a colectomy with ileorectal anastamosis due to ischemic colitis and diverticulitis. I am just beside myself. I am a nurse but never have worked with GI patients. Is a normal life possible? If you all don't mind me asking, will I be able to laugh, sneeze, have sex without an accident? Any help and encouragement will be most appreciated. THanks BD

Bitzidee,

I've only had my J-pouch for 3 months and have never once had an accident. I've probably had c.diff for about a month now and that did not cause me any accidents either.

You should really start a new thread with the specific title and you'll get the answers from members here that you are looking for.
Posted 9/12/2014 8:07 PM (GMT 0)
Thanks!
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