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Help on double barrel stoma midway small intestine

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(@dutchozzie)
Joined: 5 years ago
Posts: 17
Topic starter  

Hello friendly Ostomy Community,

I’ve been happily living with an ileostomy since late 2019. As of 3 weeks ago my father in law ended up with a double-barrel stoma. He suffered from serious constipation, leading to necrosis in the small intestine and now an ileostomy about 3 meter (10 ft) into the small intestine. He is in a regional hospital with limited experience in stoma aftercare.

With my ileostomy I can eat/drink pretty much everything and have no issue with nutrient absorption. I would love to hear from other ostomates that have an ileostomy about halfway into the small intestine and in particular whether you require different food and/or additional supplements.

The plan for him is to regain strength and either re-connect everything or create a colestomy. My concern is that without supplements he may not regain enough strength for the next surgery.

Appreciate any experience or insight.


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 11 years ago
Posts: 4444
 

I wish your FIL a smooth recovery.

Because the length of the small intestine has been reduced, you'll want to keep an eye on something called "short bowel syndrome", which can lead to malabsorption of nutrients are more frequent/liquid output, even when compared to a standard ileostomy.

There are newer medication that are supposed to help with the absorption of nutrients in people with SBS, so that might be something to discuss with his doctor.

It's entirely possible that additional supplements will be needed, and perhaps, additional nutritional support (so he's getting enough calories).

If possible, make appointments with both a stoma nurse and a registered dietitian who has worked with stoma patients. And also look into additional resources through SBS groups and organizations like https://shortbowelfoundation.org/

Best of luck to him!

 

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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 LK
(@dlkfiretruck)
Joined: 8 years ago
Posts: 1583
 

DutchOzzie, Welcome back , its been a little  while.  I'm  not entirely  sure what a double barrel stoma means.   I hope you father inlaw is staying strong through these challenges he is facing.

  The start of my journey to my ileostomy began with severe bouts of constipation as a child, passing out from pain & eventually being diagnosed with crohns in my 50's & needing an Ileostomy after 7 surgeries in 6 months  and 13 1/2 months between two major hospitals, transfered to the biggest one in Vancouver, Canada. 

I'm wondering if He has been tested for his vitamin levels to see exactly where they are at.  If not, ask to have his done. Note, some vitamins can affect the way medications work so it's important to have his doctors on board with all supplements. If further surgery is required some vitamins can affect weird things like the meds for anesthetics so ALWAYS report what he is taking. 

Make sure they test for Iron, Potassium & B vitamins. These are my 3 most evil contenders.  I have great difficulty absorbing some vitamins & nutrients. Malabsorption is a fussy thing to deal with but a very important one to tend to. Liquid & capsulated vitamins are easier for me to digest & absorb then pill form.  Beware of time lapse meds & vitamins as well. I find taking vitamins first thing In the morning before getting up for the day, at least an hour before a first meal, absorb easier. I  Think fluids, water or milk, are a little easier then food to keep some of these in my system. The second I start eating, it becomes an all day event with my guts. So taking vitamins on an empty stomach while still resting in bed,  a good hour,  has helped me to absorb some. Be aware of hot tea & coffee & caffeineated cold drinks that stimulate bowel movement. Vitamins are too costly to find in the pouch.

That said, advise him to watch for medications in his pouch due to faster  transit times. Reporting all findings to his doctor. Take photo evidence if need be. I keep a separate file on my phone for pics & another for products I use.  It's been helpful to take pics of vitamin bottles for anyone who may be shopping for me. This way, there are no returns for the right ones later, as some work better then others. 

As far as foods go... I was given a rather daunting list of foods to eat & foods to avoid. I found out very quickly I was missing too many foods I enjoy & came up with ways to prep them & still be able to eat them.  Simple ways... like peeling what I normally did not, cucumbers get peeled now.  Cutting something differently in order to avoid long strands of fibre from, say, something like asparagus. Eating shorter pieces cut across verses diagonally made a huge difference. I love tender crisp, steamed veggies, so checking doneness with a fork verses a knife made a huge difference in what I can eat now. A knife will go thru most anything, a fork not so much.  No one really enjoys mushy veggies, but testing with a fork meant I avoided the mush still allowing for a nice texture in something like brocolli. I love corn, but the light shells on the kernels caused blockages. I have a lot of scar tissue causing stiff belt like cinched in sections of what's left in my small bowel, which in turn caused lips or speed bumps for foods to get past. This often caused blockages. So when craving corn I managed to remove the skins into a napkin still enjoying the corn part. As I said it's a fussy issue all around, but worth the fuss to avoid blockages. I even peel the shell off of bell peppers in order to eat them. You do need one or two good sharp  veggie peelers around but its been worth the extra fuss & work. Cream corn is easier to digest verses kernel with the skins on and on top of rough mashed potatoes tastes pretty good. If you have never had canned tomatoes over spuds, give it a try too.  Canned peas over frozen peas, but again, mushy is not fun so I enjoy frozen and remove the skins to a napkin.  

Cutting meat across the grain is very important for digestion, but so is mixing up a bite of meat with veggies & potatoes. Drinking with a meal aids in digestion, I just need to drink before, during & after a meals. This is highly important to stay hydrated esp. If food transit time is quick.   Gravies & Sauces with foods have helped tremendously as well.  Anything that makes foods more "slippery" to avoid blockages has helped too.

This is a lot to deal with, but,  please, if you have any questions at all, feel free to ask here. If I can't help, there may be others that can. I wish your father inlaw well & very unfussy eating! 

Linda


   
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 LK
(@dlkfiretruck)
Joined: 8 years ago
Posts: 1583
 

@veganostomy... Thank you Eric!  I did not know about the link you provided for SGS!  I will be checking in there later on today. 

As always you are a huge provision of information! I appreciate you & all you do here, so VERY much! 

Linda


   
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(@squeakyandliza)
Joined: 6 years ago
Posts: 1053
 

I was severely malnourished when my colon ruptured. I use Boost drinks with high protein. They have 20 grams of protein each. The strawberry are my favorite. I think they go through to my ileostomy fairly quickly, but they did help me regain strength. 

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


   
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 LK
(@dlkfiretruck)
Joined: 8 years ago
Posts: 1583
 

@squeakyandliza  ... I tried drinking the Boost drinks, they were very palatable. But as you said, they did go through my ileostomy very quickly as well.  For me it was literally in less then an hour, easy.  But that's the joy of short gut syndrome. A simple dinner can be in my pouch within an hour, four if I'm lucky. Adding sauces does  provide slippage which helps prevent blockages with all the scar tissue grabbing what little is left of my guts, but,  it also provides extra calories. Ofcourse, everything in moderation.

I don't think the Boost or any other brand I tried helped at all with anything worthy of vitamins & minerals just bcuz of the fast transit time, for me. Chocolate was my favorite  though. I'm very glad you feel you got nourishment from the Boost drinks, they are by far the better tasting of the products available out there. 

Linda


   
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(@dutchozzie)
Joined: 5 years ago
Posts: 17
Topic starter  

Thanks for the feedback - learned a lot. I understand 'normal' ileostomies but this is slightly different. As context a double barrel stoma looks like 2 stoma's directly next to each other. In case of the FIL it happened as the surgeons removed the part of the small intestine with necrosis and pulled both working parts of the intestine through the abdomen. It's usually done as a temporary procedure but in your 80's temporary can have multiple interpretations 😐 

We're working with a dietician and another stoma nurse. His diet in being adjusted and enhanced, plus he's using 4x 4mg loperamide to slow down bowel output (too liquid) and improve nutrient absorption. As a regular user of loperamide myself, that's A LOT 😮 


   
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 LK
(@dlkfiretruck)
Joined: 8 years ago
Posts: 1583
 

@dutchozzie  ... Thank you so very much for explaining what a doube barel stoma is... I had no clue, so I really appreciate you taking the time to fill me/us in on this. 

Your FIL is very lucky to have you working with him to get as much information as possible.  As I discovered, a Dietitian, though great, lacks the experience of actually eating and *cooking differently* to survive a high output stoma, let alone eating for one to avoid blockages and vitamin defienciencies bcuz of high output.  Just keep an eye on how much passes in a day & with the meds, hopefully, there will not be any issues. Please don't hesitate to ask if you need help with ANY foods. 

I find myself wanting to ask how you figured out a pouch system for 2 stomas close together, for your FIL. Are you dealing with leaks or skin issues at all?  How is he managing, as in his mood ? This has to be quite an adjustment.   At 80, he must be one tough gentleman.   I'm glad to hear you have the help of a Dietitian, I think that's really very great!! I do hope everything goes well as you are moving forward with him. I'll be here cheering you all on. 

 

Linda


   
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