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Hi all, 

It is almost 6 weeks since I underwent Laparoscopic Proctocolectomy (large intestine and rectum removed) and J Pouch with temporary ileostomy.

Two weeks back, my temporary ileostomy was taken down and the J pouch was connected. This was done because I developed a stricture 10cm from stoma output. The stricture needed to be removed through a surgery. My surgeon advised that I prepone my reversal surgery so both can done it one hit.

My small bowel has not "woken up" yet following the J pouch reversal surgery. My surgeon calls it an ileus and has advised me to wait. Its been 2 weeks. I am still waiting. He reassures me that it WILL start working. I trust him BUT I am tired of the pain. I am tired of waiting.

I am a new mother and have been away from my 4 month old baby for 6 weeks straight.  6 consecutive weeks in the hospital is getting to me. 

Could anyone who have experienced post surgery ileus please share your experience?

How long did it take for the ileus to stop? and for bowel activity to resume? When will I see the end of the tunnel?

What can I do to kick start bowel activity apart from just waiting? Would Acupuncture/reflexology help? Any other ideas?

Appreciate any suggestions/feedback/advice.

Desperately yours,

Yogs

 

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Below is a timeline of events leading up to and post J Pouch surgery. It's a long read. I picked up many things by reading others experience. I feel if I pen down my experience it may help someone. Here goes...

Early April 2017: Delivered a baby girl. It was a vaginal birth. My Obstetrician "felt" a mass in the rectal area and advised me to get a colonoscopy.

Mid-June 2017: Colonoscopy done. Biopsy results indicates a large cancerous growth in my rectum. It was Stage 1 Rectal cancer.

Late June 2017: After discussions and 2nd opinions, I underwent Laparoscopic Proctocolectomy (large intestine and rectum removed) and J Pouch with temporary ileostomy. 

1st week post surgery: Acute pain. Lots of distension. I was on Oxycodene on PCA. Intravenous drips. Fasting. Midway through the week, I vomited several times. The NG tube was put on. Hell. 

2nd week post surgery: I started to get green liquid (bile + gastric acid) in the stoma bag. Occasionally there would be gas. Encouraging signs that some bowel activity started to occur. I went from fasting to drinking liquids. NG tube was taken out. I still had pain and was given morphine injections.

3rd week post surgery: More progress. Bowel output went from greenish liquid to thick brownish liquid. I started to eat soft solids.

A day or two later: There was a sudden decrease bowel output. Acute pain. Gastrografin did not help ease the bowel. Back to fasting again. I was soon put on Total Parenteral Nutrition. The NG tube was back. The painful morphine injections continued

End of the 3rd week: Surgeon performed an ileoscopy and found a benign appearing stricture about 10cm promixal the stoma. The J Pouch was intact and compliant. 

Midway through the 4th week: The stricture was still present. My surgeon did not want me to languish in pain. The stricture will need to be taken out by a surgery. We decided the J pouch reversal will also be performed in the same surgery. The J Pouch was scanned and tested for leaks (through gastrografin injected via anus) and it was in good condition. The surgery went well. About 12cms of small bowel (stricture) was removed . The J pouch was now connected.

Immediately Post-surgery: The pain was not as intense and relentless as the first surgery. There was bearable pain where the stoma was present. Surgeon said I might take few days more than normal to resume bowel movements. We thought, a week, at most.

5th week: Lots of distension, as expected. The entire bowel area was quite dilated. 

End of 5th week: Things went south. Acute crampy pain. Its been a week since J Pouch reversal surgery and there has no small bowel activity. I vomited few times. The NG tube was back. Lord! The surgeon found there were two points of bowel obstructions through the scan - the first one, an inflammation near the stoma wound; second, a kink in the bowel. 

Midway 6th week:  The pain remained. Back on Oxycodene via PCA. Total Parenteral Nutrition continued. Surgeon did another scan. The kink seems to have gone away. The inflammation near stoma area had reduced considerably. During the scan, surgeon observed the gastrografin goes all the way through the length of the small bowel. So no major bowel obstructions. No bowel activity too. Ileus.

Now: Ileus continues. When will the bowel start working?! 

After my surgery it took ten days for my bowels to wake up. It was the longest ten days of my life. There are no magic cures except time. What helped me the most was walking around, going outside (into a hospital courtyard), and spending less time in the hospital bed. I'm not sure it made the ileus resolve any faster, but it improved my mood a lot. Good luck!

Hello, Yogs. 

I am very sorry to read about your long difficult road. At my pre-admission meeting I was told to bring chewing gum for my takedown. I was to chew gum when I woke from surgery to encourage the gastric juices to work and the guts to think there is food coming and to wake up. It took two days (horrible gas pains) for my insides to wake up and the gas to be expelled. Nothing compared to your weeks of pain, but just a small suggestion about the gum. It might cause more gas for you so check with your medical team before trying gum. The nurses gave me warm black tea to drink to try to relax my insides (or to distract me, not sure which) but it worked. I had the same type of cancer, stage 1. Everything is functioning now and I hope the same for you as quickly as possible so you can go home to your new baby. Do they have an idea when the NG tube might come out so you can try to eat or drink a small amount, and wake up your insides? I'm sorry I don't have anything more helpful.

Scott F posted:

After my surgery it took ten days for my bowels to wake up. It was the longest ten days of my life. There are no magic cures except time. What helped me the most was walking around, going outside (into a hospital courtyard), and spending less time in the hospital bed. I'm not sure it made the ileus resolve any faster, but it improved my mood a lot. Good luck!

Thanks Scott for your reply. I do go for walks in the hospital but might actually try going out to see if it helps. 

Winterberry posted:

Hello, Yogs. 

I am very sorry to read about your long difficult road. At my pre-admission meeting I was told to bring chewing gum for my takedown. I was to chew gum when I woke from surgery to encourage the gastric juices to work and the guts to think there is food coming and to wake up. It took two days (horrible gas pains) for my insides to wake up and the gas to be expelled. Nothing compared to your weeks of pain, but just a small suggestion about the gum. It might cause more gas for you so check with your medical team before trying gum. The nurses gave me warm black tea to drink to try to relax my insides (or to distract me, not sure which) but it worked. I had the same type of cancer, stage 1. Everything is functioning now and I hope the same for you as quickly as possible so you can go home to your new baby. Do they have an idea when the NG tube might come out so you can try to eat or drink a small amount, and wake up your insides? I'm sorry I don't have anything more helpful.

Hi Winterberry,

Thanks for sharing your experience. I am trying the chewing gum as my surgeon suggested. Do you know if the warm black tea was it peppermint tea as the nurses here have told me to sip on that tea few times a day. 

In the past few days the NG tube has been removed and a rectal foley has been inserted and that is draining a lot of liquid stuff. My pain has reduced a lot after the foley as it has released some wind as well with the liquid stuff. I was on free fluids till yesterday and today I have been told to try soft diet. The rectal foley is coming out today as it has been there for 3 days. Hopefully things only improve from now and I get to go home soon. 

Yogs, I am so sorry for all you've been through, and with a new baby, too. My eyes welled with tears reading your post. You are so strong to get through this, and you will. Glad to hear things sounding more positive. If it's not too painful, I was going to suggest bending forward in your seat and then rolling your spine in the shape of the letter C as you sit back up. Or sitting in a chair and rotating your upper body back and forth. Even little bits, smaller moves, to massage your inner organs and help get things moving along. I hope it's an easier trend for you from now on.

Hi, Yogs.  The tea was plain black tea, Liptons or Red Rose. No milk or sugar. I know it wasn't flavoured. I think at the time I could not stomach anything flavoured as peppermint. I do remember walking the halls every hour or so, dragging my IV pole with me. It was painful to walk, but the gas pain was worse, so I walked even at 2am, hunched over the IV like I was 120 years old.

As soon as you expel gas, you will get relief and everything improves bit by bit, day by day. And when you start to eat food or soup the green stuff (bile) will turn colour and start to thicken a bit. My first solid food was egg salad on white bread. Heaven. And packed with protein and vitamin B, which pouchers need. As soon as you start to have BMs, remember to use a bidet squeeze bottle or invest in a bidet attachment for your existing toilet. It will save you from horrible bum fire and raw bleeding skin. You might go 10+ times a day and it might be liquidy, and any residue from that will start the burn. Calmoseptine applied to the area to protect. Or.....borrow your baby's diaper rash cream! Zincofax worked miracles for me and heals within hours. I hope you are on the road to recovery and home!

So sorry,,.this is the worst possible scenario post op.. when everything's working perfe toy but nothing works...my sympathies for the dreaded NG tube...ny worst nightmare. 

After 20 yrs of bowel surgeries with perfect post ops...i got my 1st ileu in 2007...never forgot it except that I had 8 more with the 8 subsequent surgeries.. it has become a "thing " now...24 hrs to 7 days of living hell...

Walk, bounce up and down on your toes, on a step, climb stairs,  roll back and forth on a Pilates ball, bounce in it. (Skip rope (gently without the rope) ...keep moving...heating pads, hot liquids (try orange blossom water in hot water ...works miacles) , juice on ice, Zumba ....as long as you keep your body Gently moving in all directions...my best friend drove me to ER at 60mph in a 30 zone over 2 dzn speed bumps in a sports car...i thought that my teeth were going to fly out of me...1hr later we reached ER and suddenly my leg-bag started to fill up....nearly burst. It was all of the shaking and bouncing.. . ( best to avoid the speeding tickets and just bounce on a ball)...

My heart goes out to you...

Sharon 

So sorry,,.this is the worst possible scenario post op.. when everything's working perfe toy but nothing works...my sympathies for the dreaded NG tube...ny worst nightmare. 

After 20 yrs of bowel surgeries with perfect post ops...i got my 1st ileus  in 2007...never forgot it except that I had 8 more with the 8 subsequent surgeries.. it has become a "thing " now...24 hrs to 7 days of living hell...

Walk, bounce up and down on your toes, on a step, climb stairs,  roll back and forth on a Pilates ball, bounce in it. (Skip rope (gently without the rope) ...keep moving...heating pads, hot liquids (try orange blossom water in hot water ...works miacles) , juice on ice, Zumba ....as long as you keep your body Gently moving in all directions...my best friend drove me to ER at 60mph in a 30 zone over 2 dzn speed bumps in a sports car...i thought that my teeth were going to fly out of me...1hr later we reached ER and suddenly my leg-bag started to fill up....nearly burst. It was all of the shaking and bouncing.. . ( best to avoid the speeding tickets and just bounce on a ball)...

My heart goes out to you...

Sharon

P.s.  all opiates are counter intuitive...they slow your bowels down...pain meds like morphine make things worse not better.  If you can get by without them...do.

Last edited by skn69
Lambiepie posted:

Yogs, I am so sorry for all you've been through, and with a new baby, too. My eyes welled with tears reading your post. You are so strong to get through this, and you will. Glad to hear things sounding more positive. If it's not too painful, I was going to suggest bending forward in your seat and then rolling your spine in the shape of the letter C as you sit back up. Or sitting in a chair and rotating your upper body back and forth. Even little bits, smaller moves, to massage your inner organs and help get things moving along. I hope it's an easier trend for you from now on.

Lambiepie, i have been doing those excercises you suggested past few days and they do seem to be helpful. Will keep doing them from now on. 

skn69 posted:

So sorry,,.this is the worst possible scenario post op.. when everything's working perfe toy but nothing works...my sympathies for the dreaded NG tube...ny worst nightmare. 

After 20 yrs of bowel surgeries with perfect post ops...i got my 1st ileus  in 2007...never forgot it except that I had 8 more with the 8 subsequent surgeries.. it has become a "thing " now...24 hrs to 7 days of living hell...

Walk, bounce up and down on your toes, on a step, climb stairs,  roll back and forth on a Pilates ball, bounce in it. (Skip rope (gently without the rope) ...keep moving...heating pads, hot liquids (try orange blossom water in hot water ...works miacles) , juice on ice, Zumba ....as long as you keep your body Gently moving in all directions...my best friend drove me to ER at 60mph in a 30 zone over 2 dzn speed bumps in a sports car...i thought that my teeth were going to fly out of me...1hr later we reached ER and suddenly my leg-bag started to fill up....nearly burst. It was all of the shaking and bouncing.. . ( best to avoid the speeding tickets and just bounce on a ball)...

My heart goes out to you...

Sharon

P.s.  all opiates are counter intuitive...they slow your bowels down...pain meds like morphine make things worse not better.  If you can get by without them...do.

Sharon,

your post made me laugh reading about speeding tickets. Thanks for all the advice you have given. Will refer to them whenever needed. I did take morphine almost everyday when my pain was horrible, my surgeon never had a problem with although I checked with him before taking them so often. Anyways am out of it now and its a good lesson for future. 

I am on solids now with 6-7bm/day. They are planning to discharge me in the next few days. Hopefully things only improve from now on. 

Winterberry posted:

Hi, Yogs.  The tea was plain black tea, Liptons or Red Rose. No milk or sugar. I know it wasn't flavoured. I think at the time I could not stomach anything flavoured as peppermint. I do remember walking the halls every hour or so, dragging my IV pole with me. It was painful to walk, but the gas pain was worse, so I walked even at 2am, hunched over the IV like I was 120 years old.

As soon as you expel gas, you will get relief and everything improves bit by bit, day by day. And when you start to eat food or soup the green stuff (bile) will turn colour and start to thicken a bit. My first solid food was egg salad on white bread. Heaven. And packed with protein and vitamin B, which pouchers need. As soon as you start to have BMs, remember to use a bidet squeeze bottle or invest in a bidet attachment for your existing toilet. It will save you from horrible bum fire and raw bleeding skin. You might go 10+ times a day and it might be liquidy, and any residue from that will start the burn. Calmoseptine applied to the area to protect. Or.....borrow your baby's diaper rash cream! Zincofax worked miracles for me and heals within hours. I hope you are on the road to recovery and home!

Winterberry,

Things have improved over the past few days. I am expelling gas and eating solids. Rectal foley and all the IV has been stopped and hopefully home soon. 

I did read about the bidet and will definitely look into buying something very soon. Thanks a lot for all your advice. 

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