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Thread: Kathleen's GI issues...

  1. #1
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    Default Kathleen's GI issues...

    I havne't been on for a while so I have a LOT of catching up on everyones posts. It's been pretty crazy. I've mentioned before that Kathleen's been diagnosed with Celiac and Crohns disease. Colonoscpoies have shown both to be pretty much under control but she has continued to get constipated and have diarhea becasue of this. XRyas have showed her to be backed up so we've tried to clean her out with Miralax and Magnesium Citrate both of which did nt work(the latter caused a lot fo pain). She was admitted to the hospital after several days of constant crying.Her entire right side was full of stool. they administered Golytly through a nose tube and this worked. She's taking Miralax daily and Dulcolax every other day and going a little but I don't think enough. Pain is slowly coming back (3 weeks after the clean out). She's been reffered to Boston Children's Hospital for further testing. I'm jsut waiting patiently for the appointment((it's been 3 weeks). I'll be around cathing up on posts thanks for everyone who shares on this site.
    Mary Grace

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    Distinguished Community Member Barque's Avatar
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    Good Lord!! How old is she? Does she have polyps in there blocking things? I got that way last year then had 5 polyps removed and things are moving right along now, with a little help but I know I was in agony before. Couldn't go for weeks at a time unless I filled up on laxatives. This intestinal business is torture both the diseases and the treatments.

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    She just turned 15. she has Down syndrome and moyamoya disease that caused her to have several strokes. I think they would have found polyps in one of the many tests she already had. (colonoscopies,xrays,MRIs ultrasounds). I believe one test they want done in Boston will be Hirschprungs. Something kids with down syndrome are more prone to have. She's had constipation her whole life but it was about a year ago it got really bad. It's been an aweful year trying to figure out what's going on and how to help her. She's missed a lot of school which is sad because she LOVES it. The Miralax and Dulcolax are making it a little easier for her to go but it's certainly not something that I want her on long term and it's just treating symptoms.
    Mary G.

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    Distinguished Community Member Barque's Avatar
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    Thumbs up

    I eat Frosted MiniWheats at least once a day right out of the box as a snack or with cream in a bowl and I'll tell you they really improve my situation.

    Let me ask you this, does she drink enough? I know that a person can get impacted in that decending colon and it can harden like a brick and is impossible to pass. I tend towards that so...... Adding fluid, warm water by way of a small enema, adds moisture and even the rock hardest marble can move. I also try a Correctol AND a stool softener together if things get difficult. They have baby enemas which might be easier for her to tolerate and be sure to warm it up. Does she sit a lot? Constant sitting doesn't help either.

    My Dad used to tell me this: If you have gas that won't move then lay on the floor and roll around on your stomach for a while.

    It does help. Maybe you could make that a regular thing like a game.
    Last edited by Barque; 04-05-2012 at 04:20 PM.

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    Hi Mary G. I am so glad that you posted an update about Kathleen, but I'm so sorry that she is still having terrible GI problems. There is a society (you probably already know about it)
    http://www.hirschsprungs.info/ - the Ntl. society for Hirschsprungs -it's from the UK. It used to be also for pseudo obstruction which Nick had (he also has a dg of Crohns) but I don't think the US exists anymore http://www.acronymfinder.com/America...ty-(APHS).html It used to be run by the incredible Dr. Mark Hyman - you can google him and his studies on children with disabilities and chronic constipation. The other guru we saw in London was Dr. Peter Milla, but I think he might be retired now - he's another genius with an interest in disability and motility. Anyway, good luck my friend and I hope you find answers. xoDonna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    Thank you all for your input. This is a great site and I missed reading all the posts. Kathleen has Celiac and has to eat Gluten free so most "whole grains" are out. Since she's always been constipated I've always worked hard at a high fiber diet. When she was diagnosed with Celiac it was harder to get a high fiber diet in the glueten free food, but we've slowly gotten fiber back into her diet. She has always had to stay hydrated because of the Moyamoya and threat of more strokes. She drinks mostly water and gatorade (diluted) she also eats a lot of fruit and veggies. The Miralax is keeping her stools soft but she's just not getting it out due to what appears to be a motility problem. Thanks Donna for the webistes, I think I visited the first one but I'm going to check them all out. I need to do something while we wait for an appointment...
    Mary Grace

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Mary Grace & Kathleen))))))

    I'm certainly empathizing with you and with dear Kathleen, as constipation was/is a major factor for my boys, and it's the reason Jon had his sigmoid colon removed and now has a colostomy.

    Our experience with Miralax was that it produced a lot of gas. Of course, all of Jon's hospital GI docs (4 of them) recommended it.

    I prefer the good old fashioned Milk of Magnesia.

    If Kathleen needs a stool softener, then Peri-Colace or Docusate Sodium are options.

    Liquid glycerin suppositories are helpful to lubricate the bowels for easier movement. They come in small vials contained in a box, and are available over the counter. Use as you would an enema.

    Daily warm prune juice can be helpful. I think I've mentioned Fruit-Eze to you in a prior post. It's a paste of prunes, raisins, dates, and prune juice. Papayas are supposed to be helpful for bowel movements, although we never made progress with them. Avoid bananas and cheese, as they can be binding.

    Have you asked Kathleen's docs about giving her probiotics? Acidophilous, or yogurt like Activia, or Kefir, or Align.

    Hoping you get that appointment at BCH very soon.

    Please keep us posted. Sending healing prayers ~

    Love & Light,

    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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    PS: We use golytly 170 mls per day to keep Nick regular and it's very helpful. Lactulose caused terrible gas pain.
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    I agree with you there, Donna. Lactulose caused terrible gas for both of my boys. It's especially so, if the diet also includes a lot of fiber.

    Love & Light,
    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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