Short Gut Syndrome Parents' Support Group
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Next Support Group Meeting

February 27, 2010
10:30 a.m.

Taylorsville Library
4870 S. 2700 W.
Salt Lake City, UT
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Tips and tricks

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Letting your child have more normal experiance's.
By: Jessica Taylor          (1:23 PM 11/18/2009)
I would like to tell everyone who isn't able to bathe their kids or let them play in the water. I found out about a Protecter for a central line called a Aquaguard!!!! You can get it through your homecare Pharmacy It has 4 sticky sides, my little Jayden has been able to take bubble baths, play in the sprinklers, and go to a swim park. My husband and I have been so happy, This has helped my boy have so many more great experiances and he does not feel left out like he use too. If you are worried about Having the line show and the g-tube get one of those swim shirts. That is what I use for my Jayden and I hope that I have been able to help someone out there.
Central Lines and Bubble Baths
By: Renee          (1:36 PM 11/29/2009)
My 2 1/2 year old son has had a central line since birth. I have always been able to give him bubble baths daily since we got custody of him at 8 months, thanks to some very helpful homecare nurses who showed me how to make this possible. With a few precautions, it is very possible! Aquaguard is a great product but some people also find Saran Wrap's Press and Seal plastic wrap is also an alternative. The Press and Seal wrap doesn't work too well for a toddler but we just take a piece of plastic and tape around all four sides and place it over the central line dressing, then I use Coflex to securely bind the access port to his arm. His arm does get wet a little but the critical area where the central line goes into his chest, is rarely a problem. There have been times when the dressing is several days old that water does seep into the dressing, Make sure to inspect it carefully after each bath. If water has seeped in, immediately do a dressing change. It is worth the effort because a kid who has constant loose bowels can feel soooo much better after a warm bubble bath. He smells better and it's really a highlight of his day to play in a tub full of water. Besides I think it raises the quality of his life considerably.
Using household items in creative ways
By: Emily H          (12:54 PM 01/31/2010)
Our Winter 2010 issue highlighted a few household objects that can be used in creative ways to care for a child with Short Gut. Have you come across an extraordinarily useful way to use something ordinary?
glad wrap
By: barb          (9:05 PM 06/04/2010)
With our daughter having an illeostomy and a central line sepsis was common. Our solution in the end was to tightly wrap the end of her line in glad wrap. round and round like a bit of plummers tape. The amount of bag popages never decreased but the infections certainly did!! We never had to use tape to hold it as the stickyness of the glad wrap was sufficient. It was a cheap and effective method.
Central line protection
By: sherry          (1:45 PM 07/27/2010)
Our daughter Gabby is 7 and very active. We get a product from our home health called Parafilm that just wraps nicely around her cap or connection. Another thing we found are little sports bras that keep her line up and in next to her when she isn't hooked up to her TPN.
Re: Central line protection
By: Emily H          (11:53 AM 08/04/2010)
What a clever idea! I've seen designs for a little undershirt for toddlers.. but a sports bra would be perfect for a little girl!
Severe GI Bleeds
By: Renee          (9:58 PM 11/21/2010)
We have just experienced our 8th severe GI bleed. Aaron throws up blood and it gushes from his rectum at the same time enough to saturate his clothing, socks, 2 diapers plus leaves a good sized puddle on the floor. His heart rate goes up to around 200 and his blood pressure drops considerably, infusing blood cannot go fast enough and frequently we feel as if we are loosing ground. After several scopes, they still cannot find the source of these high volume bleeds. Has anyone had any experience with this? A couple of the scopes have shown some small ulcers near the areas where the STEP procedure scars are. These are caused from excessive stomach acid. We coat these with Sucralfate and of course try to control the acid as best we can with Zantac and Prevacid. I just have a hard time with the fact that those small ulcers can produce the volume of blood we are seeing in just a couple of hours. It's as if he is bleeding from an artery or something but they have not been able to find any evidence of this once they go in and take a look. We feel as if our 3 year old son is slowly slipping away from us. He has had so many blood transfusions that I have lost track of how many he has actually had. We would really like some input from anyone who has had any of these types of experiences. Aaron's Doctor says he even lays awake at night trying to figure out how to best help him. I have the utmost confidence in this doctor and really believe in his abilities and knowledge, but even he is at a loss. Can anyone help?
Re: Severe GI Bleeds
By: Emily H          (10:08 AM 11/22/2010)
Renee, when I read your post this morning it broke my heart! Perhaps because Patrick and Aaron share a nurse... or because they are both adopted... I've always felt a certain attachment to him and I hate to hear that he's struggling so much with this.

I don't have any personal experience with this... But I do have a few thoughts and would like to refer you to another support group I participate in that has some members who've faced similar problems.

The very first thing that came to mind today was that excessive bleeding can happen with TPN associated liver failure. Patrick's transplant team was adamant when we started with them that we eliminate any unnecessary stoma because of the risks that portal hypertension could cause him to bleed out from those sites as his liver got worse. How is Aaron's liver? Have the docs been watching his PT/INR? I've seen the PCMC docs work miracles in helping with liver problems.. perhaps looking at the liver might help you slow the bleeding enough for the ulcers to heal.

Second, I know that Patrick's liver problems have led to spleen problems and that he bleeds more whenever he is fighting an infection. This applies not just to line infections, though those hit him hardest, but also to viruses and sometimes to bacterial overgrowth. He'll bleed profusely from the tiniest holes.

I went out and did some research this morning in the support groups I participate in and found a thread in the Yahoo! Short Bowel Syndrome support group from a parent describing a similar problem.. history of bacterial overgrowth, ulcers where the STEP was done, and a resulting GI bleed. The gist of the conversation was that it seems that flagyl and bacterial overgrowth created the problem, and that the result was ulcers that bled.

They tried a lot of things, clamping, antibiotics, high fiber diet... The posts stop before they found a resolution, so I don't know how things came out, but I thought that the thread might be helpful to you, as would connecting with the parent who started the thread, if possible.

So, here is a link to the thread.

Our message board doesn't support hyperlinks, so you'll need to copy and paste this link into your browser. You'll need to become a member of the group to view the thread, and I think that may take moderator approval. However, being able to talk to another parent facing these problems I think would probably help a lot, so it's probably worth a try.

Finally, I am one of the very biggest fans of the PCMC GI clinic. I think the doctors there are among the most caring, qualified, and capable doctors I've ever met and I completely trust Patrick in their hands. However, there have been advantages to Patrick also having a transplant team behind him who have treated more patients with severe intestinal failure. They've seen a lot more patients facing the effects of long-term short gut syndrome, intestinal failure, and liver failure. That experience has taught them things.

We have been SO impressed with the way that Seattle Children's has allowed Primary Children's to be Patrick's primary hospital and care team, but still have been there to provide the extra support and help and experience. It's a unique and wonderful opportunity they've given us.

If you start to feel like you just need other brains brainstorming on this problem, you might consider taking Aaron for an evaluation there. I know it's scary and complicated and logistically very, very hard.. But it's more doable than it seems. I don't usually plug doctors or programs or treatments here on the board.. but the partnership we've seen with PCMC and Seattle Children's is unique in the country and might be worth looking into for Aaron.

Best of luck! Keep us posted! And, if you ever need to talk, I'm here! My experiences may be different, but I know what it's like to feel helpless and afraid and like you have the only child with a certain set of complications.

UPDATE -Aaron and severe GI Bleeds
By: Renee          (2:07 PM 11/22/2010)
Emily, Thanks for the info. Aaron's liver has healed nicely eversince we took him off all lipids almost 2 years ago. Many cannot believe how jaundiced he was when we got him and how good and normal he looks now. His liver has actually shrunk in size and so has his spleen although it is still slightly enlarged. He has had a few problems with Bacterial Overgrowth and has recently been taken completely off all medications as maintenance drugs except the antacids and a little xifaxan to control C-diff, which we have also had a difficult time with lately. The Docs at the GI clinic at Primary are looking for a specialized scope that they think might be helpful but it is relatively new technology and UofU nor PCMC have one, they are trying to borrow one from another medical center. It has a balloon on the end of it and can push and pull through all the folds in the intestinal tract, thus seeing a lot more. I fear this may be so much more invasive to Aaron and I don't know if that will help them find the problem either. The problem is that he has to experience yet another bleed for them to be able to take it down and scope him with it. They are also checking with the surgical team to see if there is anything they can do to help them locate the problem. It took them over 8 hours last time just to cut through his scar tissue before they could even do more of the STEP to lenthen his bowel.

Another thing that is a problem is that Aaron is a very strong willed child. He almost refuses to eat carbs at all and then we also have the sudden drops in his glucose levels and have been to the emergency room for levels in the 40's before. He knows he doesn't feel good when he eats things like crackers or even bread. He prefers not to eat that. He loves steak and eggs and ham. Sometimes he eats a dozen eggs a day, but at least eggs are good food and a good source of protien that he needs anyway. Unfortunately these don't help the glucose levels. He doesn't like milk either, so most of his milk is given to him overnight through the g-tube, which he also hates. The other day he just unhooked himself, and let it drip all over his bed.

I appreciate the link to the other support group. I will check that out. If you have any other suggestions, we are all ears!! Thanks.

Tips For Lines Getting Tangled?
By: Courtney          (10:22 AM 01/13/2014)
My son is 10 months old and is very mobile. He has a TPN line, a lipid line and a g-tube line. He is only allowed to be off of his TPN and his lipid line for 4 hours out of the day. Does anyone have any tricks on how to keep them from getting all tangled up together and to keep him from standing on them when he gets up? We tried taping them but they just got so twisted that his lines began to kink. I'm stumped.
2 tips
By: Greg          (10:12 AM 07/26/2014)
1. Alex, our short gut guy, has excessive diarrhea that usually translates to 10-15 stools per day. The GI staff keeps giving us advice about what to do if Alex's skin begins to break down due to this constant barrage upon it. Alex is 14 months old and so far the worst problem we have had was a little redness. The only strategy we have employed is NO baby wipes. Warm washcloths with water only! We have not used barrier creams or any diaper rash ointments since leaving the hospital. The only thing we use is powdered corn starch straight out of the box (I shake it on heavily). I saved an old oregano container and washed it out to reuse as a shaker. I learned this from my mother and used it on my daughter (who does not have GI issues). We decided to try it on our son with short gut and his docs are always amazed at the condition of his skin. Hope this helps someone.

2. Anyone who has to order elemental formulas...We ordered our EleCare and now our EleCare Jr from a website called It's about 50-60 dollars per case of 6 cheaper than anywhere we have found. Our insurance agreed to reimburse us for it as long as we ordered it from this website.
Medicine schedules
By: lily          (1:02 AM 07/19/2015)
loperamide: give on an empty stomach if possible. It's best to give this medicine at least half an hour to one hour before feed. If the instructions are 3 times a day and you're in the hospital, then I would advice to ask the nurse to give every 8 hours. Also, give it when there's the greatest volume going through. I gave my child 2 doses when her overnight continuous feed started to maximize the benefits of loperamide as her volume of milk that she receives is far greater on continuous than for bolus feeds. I would give the full dose of the medicine. I tried giving a little bit at a time in each bottle but that ended up defeating the purpose of the medicine as the dosage was too small.
Omeprazole: give an hour before a feed would be optimal. But do not give at the same time as iron as it is hard on the stomach. We have this to prevent acid reflux.
Multivitamin and iron: give after the beginning of continuous (say an hour or two) because these make some kids throw up. Best to give with major bolus feeds or after their stomach has milk from continuous feeds.
Sodium chloride: could be hard on the stomach. But better to give an empty stomach if you want to advance feeds. Ostomy output is higher when sodium chloride is give at the same time as milk. Sodium chloride is just salt water so it draws out water from the milk into the ostomy bag.

I find journal articles by Christopher Duggan to be very useful reads. The general guideline on feeds is not more than 200mL per kg of baby's weight by volume. And not more than 140kcal per kg of weight. It helps you to know the maximum amount of milk you can give to your child.

As far as formula, elemental formulas are the best. There are two: Neocate and Elecare. It may trigger some gassiness in the baby. So Gas-X aka simethecone could help. This medicine is actually sweet so your baby may like it. There are also massages for colic and gas relief if you notice an increase in the fussiness of your child. Tolerance may take a couple of weeks.
Ostomy bag
By: lily          (1:16 AM 07/19/2015)
I hate ostomy bag changes. But here are a few tricks I have learned.
1. Pre-cut wafers and have a template ready as well. This way, you're not cutting wafers as your child is screaming.
2. Study your child's anatomy. Our baby is small so we cut out areas to accommodate her belly button and her leg crease. Cutting out a space for both made sure that the wafer is flush against the skin. Otherwise, every time she moves her legs, the wafer will move as well.
3. Unless your child is having skin breakdown, do not use stoma powder. And also, don't use no sting. The ostomy nurse said these two are not necessary for people with no skin breakdown. The instructions also clearly state so. But all of the NICU nurses used both. That's just wrong according to the ostomy nurse.
4. Apply the heat pack for as long as possible. I do at least 5 minutes to make sure that everything really sticks. It's a pain and my baby screams throughout the process. But the bag stays on much longer this way.
5. Instead of using cotton balls, it may be better to use a syringe and suck out the ostomy output.
6. It's a pain but it is better to frequently change the cotton balls or poop water via the syringe. Otherwise, the weight of the ostomy output especially when added to the cotton balls may drag down and start to lift the wafer off of the skin.

Before reconnecting surgery.
It's good to do bum prep about 10 days before the small and large intestines get reattached. Get some poop from the ostomy bag and put it in a clean diaper and let your baby sit in it for a while. Start with a couple of minutes a day and work your way up to maybe 10 minutes two or three times a day right before surgery. This way, your baby's butt will be less prone to skin breakdown.

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