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6 Year Old with UC and Surgery

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Ulcerative Colitis
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Posted 10/4/2010 4:06 PM (GMT 0)

My son was diaganosed with UC a few years ago, he is now 6.  He has had symptoms since he was 6 months old.  We tried the natural progressions of medicines including Remicade, with mixed results.  We decided after Remicade was not successful that surgery was the best option.   We are fortunate that our son responds to prenidsone, but new this was only for short term relief.  Prenisdsone was able to keep him stable whille we researched surgons and surgery options.

We are very fortunate to have fantastic local Dr's, surgeon, and children hospitals, yet even saying that we were suprised on the differences we found.

What we found in the 8 weeks surprised us.

Even though UC 2 to 3 stage surgeries are common - (Colon Removal, JPouch, Reconnect) what was not common is who and how this is preformed on a 6 year old. 

just because a surgon says he will do the proceedure laporscopicaly all laporscopic proceedures are not the same.

There are different types of Laporscopic surgery, (Hand Assisted, and non-Hand Asssisted). 

  • With Hand Assisted,  the surgeon will use laperscopic tools but will do most of the work via a 2 to 3 inch insision at the belly button.  This hole will provde a hand access into the bowels area.  The intestins will go to sleep, and the hopital recovery time is 5 to 10 days.
  • With Non-Hand Assisted, the surgon will only use laperscopic tools, no 2 to 3 inch insision at the belly button, and the intestins will be active after surgery.  Hospital recovery time is 2 to 4 days.
  • Iron Levels: Typically your iron levels are very low after a flare up, this was the case with our son, in the past we would give him large dose of oral iron pills, this would both irritate is system and would slowly raise blood iron levels over 2 to 3 months.  There is a much simpler option, get an iron infusion, this boosts the iron levels within 2 weeks and does not irritate the bowels.  Our son would have much higher energy levels after each infusion.  The UC would seem to get more stable after. 

We opted to have 3 surgeries with a surgeon who performed Non-Hand Assisted Laperscopic.

Our son had his first surgery last week - 9/29/2010, it went great and he was release 48 hours later.

We have since has a minor setback, he had a blockage on saturday 10/2/2010 and was readmitted into the hospital.

So far they have been able to treat the blackage with local irrigation...

His stools after surgery was moslty liquid which was expected.  As we left the hospital, he had is first dose of imodium (2mg) he only weighs 45lbs.  His stools seems to get thicker.  We then gave him 2 more doses of Imodium 2mg.  2 doses per day... and he had a blockage at the stooma site.  We were not told to follow any specific diet after surgery.. so he did eat a few bananas with a light meal, before the stooma was blocked.   

We are not sure if the Dr's should of informed us of a diet, or if our son is just very sensitive to the imodium... the dr's said that that stools are typically very watery for at least a week after surgery and this provides time for the inflamation of the intestines and stooma to reduce.  Thus not get easily obstructed.  

Has anyone else experience very thick stools after taking imodium?   

I appologize in  for seeming to be all over the place, lots of info to try to explain, not sure of the best way to organize.

I have found this forum very helpful for information on UC experiences. 

Thanks

Ron

Posted 10/4/2010 4:17 PM (GMT 0)
Ron,

Yes, you will find every CR surgeon does things a bit differently based on where they trained and based on the patient. I had the traditional open surgery 9 years ago by one of the country's top surgeons. My surgery lasted less than 2 hours which is amazing as many surgeons are typically in the 5-7 hour range.

There is no post-surgery diet to follow and everyone tolerates food differently. So while you are learning what your son can eat as an ostomate, he will have to re-learn with a jpouch. For some it's easier than others. Lomotil or imodium will slow down the transit (mouth to ostomy) and fiber will thicken. Gauging how much lomitil/imodium to use in the beginning can be difficult, and I imagine even more so when having to medicate someone other than yourself. We have all had to experiment with the right dosage and timing per day to work it out. I gave up on both imodium and fiber about a month out of surgery because I didn't notice a difference. Partial blockages are normal and to be expected. Most of the time you can manage PO at home but if your son should be in excruciating pain or unable to pass gas or stool it's time to head for the ER. Be assured that about one year post surgery blockages should be a thing of the past or rare.

Anything with sugar in it (fruit juice, cookies, etc) will cause stool to be looser. I think the only food I avoided with an ostomy was popcorn. With a jpouch I eat popcorn all the time now with no problem.

Sue
Posted 10/4/2010 4:17 PM (GMT 0)
what is he eating, there isnt a diet exactly, but for the first 6 weeks to a month, he should be on a low residue diet. No fresh veggies or fruits, no stringy things, no nuts or popcorn. bananas can make the output really thick.
Why was he given the immodium? Was he having too much output?
Posted 10/4/2010 10:26 PM (GMT 0)
he may not be chewing his food well enough. kids often don't.
Posted 10/5/2010 12:44 AM (GMT 0)
thank you,

He is doing much better tonight, things are flowing again, and once he starts eating he will be released from the hospital.

The surgeon told us this is the first case where a stooma was clogged during the first 3 days after surgery.  This is what I think happened.   The 2nd day in the hospital my son was doing great, and so they released him.... but this was before he had very much food at all... just some animal crackers and some very light food.... that night he came home and there was little output from stooma, and when we woke up there was also no output. 

I think his bowels were not completely working yet from the surgery... passing some liquid, but not ready for food yet.. that with the 2mg of imodium 2x a day (standard practice for colon removal surgery) then slowed down the small intestines even more... thus creating a stoppage / constipation effect... 

They did an irrigation and a floro..(dye with is florescent under x-rays) to look for a blockage or twist, or narrowing of the small intestins and this was all negative.  It did show that some of the small intestines from the stooma back a few feet were dialated.. or expanded, becuase it was blocked. 

So basically we will take the food intake a bit slower this time.. and do a more low residue diet until we are comforable with the daily output.  

Can anyone suggest any other liquids like Gaterade,  my son mostly drinks water, and is not a big juice / soda or powerade drinker.   I would like to use water or something similar, but with a bit of added potasium / electrolies without the added suger if possible.

Thanks for all the replies.

 

Posted 10/5/2010 12:49 AM (GMT 0)
Smar***er will work as well as Vitalyte. Vitalyte is like Gatorade but not as sweet. The citrus flavor is the closest to water but orange is my favorite. Vitalyte can be ordered at www.vitalyte.com

Sue
Posted 10/5/2010 3:50 AM (GMT 0)
i asked about the immodium because most only take it to slow down alot of output, and it seems odd they would give it to him before they knew if his output was going to be very frequent.
You could try pedia sure, gatorade, juice and soda will make the output runnier and more frequent. which if he is having trouble that would be a good thing.
Personally i just go with plain water, unless you get dehydrated thats fine.
Posted 10/5/2010 7:36 PM (GMT 0)
The goal of administering him Imodium is to slow down the intestinal movement so that the body can reabsorb a lot of liquid that will otherwise be excreted, dehydrating the child. With the loss of water there is chance of losing minerals as well. Post surgery, this is not a good idea and taking into account the kid has undergone surgery of the colon, its a really good idea to administer Imodium. Suebear mentioned it very well in her first post.

You should worry only if he has difficulty in passing the stools, something like constipation or so. Meanwhile, it may be a good idea to put him on something like Vitalyte or any other rehydrating salt mixtures. I would keep soda away though.
Posted 10/6/2010 3:11 AM (GMT 0)
i understand what the immodium does, and why it is given.
My question was if his output was more than normal. And why he was given it if he wasnt having too much. I had surgery and was not told to take it after surgery, and alot of the questions we have on the ostomies board involve asking if its ok to take immodium after surgery. So i dont think its something that is usually given after surgery. It may be different with children though.
Posted 10/6/2010 3:20 AM (GMT 0)
We were told to stay away from immodium for at least a couple of weeks after surgery. They wanted to see what the intestine was going to do on its own before slowing it down.
Posted 10/6/2010 8:49 AM (GMT 0)
I had my ileo surgery when I was 10 years old - 34 years later I still don't regret it. It gave me my life back and I'm so glad I was allowed to have it (laproscopic surgery was unknown back then). My bag doesn't bother me at all, I've grown up with it.

Probably like you, back then my parents agonised over whether I would one day say to them "Why did you let them do this to me?" I never have and am thankful for my surgery and there is no amount of money in this world you could pay me to go back to my UC days.
Posted 10/6/2010 10:29 AM (GMT 0)
I was given Imodium shortly after my surgery when I was still in the hospital. I continued taking it for about a month after going home.
Posted 10/6/2010 2:31 PM (GMT 0)
Thanks again for all the great posts.

I truely believe we made the right choice for our son and that is life will be so much fuller without the worries of flare-ups in the future.

It sounds like dr's / sergeons don't have a common methodology for using imodium after surgery... for our next surgery we will wait at least 7 days to see how much output we are getting and the consistancy of the output. As long as you drink enough dehydration is not a problem. You will just have to empty the bag a bit more often.

I think the hardest part for us will be making sure our 6 year old is drinking enough.... but I think this will come more naturally to us and him as the weeks go on.
Posted 10/6/2010 2:39 PM (GMT 0)
You hit it on the head. Surgeons vary greatly when it comes to fiber and imodium so I would listen to your doctor before resorting to the layperson's advice. Hydration issues vary too. I only drink 20oz of coffee in the morning and 32oz of water at the gym in the afternoon. I'm hydrated. Others find they need more hydration. Certainly keep an eye on your son's hydration but also know that not all of us need vast quantities of liquids.

Sue
Posted 10/7/2010 2:38 AM (GMT 0)
it's very hard to get a little one to drink enough, i have a five year old and he comes home from school and has had almost nothing to drink! Having him eat salty foods will also help.
Posted 10/7/2010 3:20 PM (GMT 0)
Vladman....I just went back and read your original post. Our son has just gone through the three step proceedure. He is older (18) but he is still my baby. I know how difficult this last while has been for your family.

Our son, Dillon, also had blockages. These are quite common for the first while post surgery due to the intestine being so swollen from manipulation. He also had an ileus which is just the small intestine shutting down for awhile after it wakes up after surgery. The cure for this is simply time (a few days) and letting it rest. After his second surgery he also had blockage problems right behind the stoma that was due to tension from the loop ileostomy being pulled downwards toward the newly built J pouch. After the third surgery he also had a partial blockage due to swelling at the join site (where the stoma had been). I am not telling you this to scare you, and indeed a lot of people sail through these surgeries, but in the time immediately after surgery blockages are fairly common.

The take-home message that I want to give you is that he has now had a working J pouch for about 7 months and he is doing SO WELL. He has had no issues with blockages since the one immediately after the third surgery. He is healthy in every way, has too much energy, and is living life exactly the way he should be. It has been a long, sometimes difficult, road for us but these surgeries have been such a blessing!

As for diet. We were told for the first 6 weeks, while the intestine is still swollen, to follow a low residue diet.....lots of mushy, white stuff...things that digest really easily. AND TO CHEW REALLY WELL. We were also told that salted potato chips could become a staple in his diet!....the body needs the salt and the potassium (both of which used to be absorbed by the colon) and they really help to thicken things up. Our dietician told him to drink G2 which is gatorade with only 7g of sugar instead of the 35g it normally has. She said that if he found he was getting dehydrated to add half a teaspoon of salt to it (although that made it taste pretty crappy). Another good thing to drink is V8 juice....the tomato base helps in absorption ( I cannot remember the sugar level)

Hang in there. I remember thinking how far away good health seemed and now Dillon has just passed his anniversary of his first surgery and has almost forgotten what UC life was like!

Cathy
Posted 10/7/2010 4:26 PM (GMT 0)
Cathy,

Thank you for sharing. We hope to be in the same place on our 1st anniversary.

Ron
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