Flaky Stool - Updated Below

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keylime
Regular Member


Date Joined Jun 2007
Total Posts : 358
   Posted 10/23/2009 10:31 AM (GMT -6)   
What does flaky, kind of loosely formed stool that falls apart easily mean? No blood or mucus, just softish/semi formed and flaky. She (my 10 year old UCer) also has just a bit of cramps when she has to go, but fine afterward and only 1 or 2 bms per day - mostly just 1. It is day three of this. She is on Tamiflu which can have D as a side effect - could this be it?

She seemed to be shaking a very mild flare and has not had blood for almost 3 weeks now.

Should I be worried.

I feel like such a nut case for always being worried about my child's stool - I figure you all can understand - my real life friends just wouldn't get it.

Thanks a bunch!
Julie

Mom of Son 18 UC dx 07/02, Lailda, Azasan 100 mg, Primadophilus Reuteri, Zyrtec, Iron, Vit/Min

Daughter 10 UC dx 08/07 Prednisone 5 mg, Colazal, 6MP 25 mg, Culturelle, Iron, Vit/Min.

Post Edited (keylime) : 10/23/2009 8:09:54 PM (GMT-6)


songlady
Veteran Member


Date Joined Aug 2009
Total Posts : 3250
   Posted 10/23/2009 11:14 AM (GMT -6)   
I would think it well might be the Tamiflu. How long has she been on it and how long will she be on it?
When I have poop-related antibiotic issues, they usually occur several days into the treatment.

Yes, we here understand! When I picked my 16 year-old up yesterday, even though he's been in remission almost 2 years, he said, "Mom, I REALLY need to use the bathroom - can we stop at your office rather than going all the way home, so I can use the bathroom?"
At first I FREAKED. Then I realized that after school is his time to "go" these days and he'd gone from one afterschool activity to another and never came home till dinnertime.

Whew, SO hard to tell when to be worried and when not.
Diagnosed UP 1983, Azulphidine
Diagnosed UC 1986 Prednisone almost 2 years
Asacol - 16 pills/day
Metamucil - 2 doses/day
Cortenemas until recently, Rowasa as of 9/8
VSL#3, Ultimate Flora Critical Care
Vitamins, Calcium and D,Flax Seed Oil
Bee propolis as of 9/2, melatonin as of 9/14


quincy
Elite Member


Date Joined May 2003
Total Posts : 25695
   Posted 10/23/2009 11:58 AM (GMT -6)   
I'd say it could be iffy....but since the Tamiflu is new, that's probably be it. If she's had any other foods that could cause loose stool, that could contribute.

Does she use any rectal meds at all?

Is she completely off the pred?

You might consider to add a bit of a fibre supplement possibly.

Hope she improves soon.

quincy
*Heather* Status: ...Asacol 3 twice daily; Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


keylime
Regular Member


Date Joined Jun 2007
Total Posts : 358
   Posted 10/23/2009 1:20 PM (GMT -6)   
songlady, she has been on Tamiflu for 6 days. The flaky stool started on the 3rd day.

If you feel like it, I'd like to hear more about your son, like when he was dx, what meds he takes, etc. I could totally relate to your story about the bathroom visit!

Heather, she is still on 5mg of prednisone daily. I wonder if it could be related to the bread she eats. She loves HomePride Wheat and it has flakes in it that remind me of what the stool flakes kind of look like. She doesn't like white bread.

What is the best type of fibre supplement?

She has never been rx'd rectal meds and doctor has never recommended them. This is something that has always confused me about her disease that I need to have clarified by her doctor, but when she had her scope it seems I remember being told she had mod-severe pancolitis, but instead of the worst part being near the rectum, her worst part was way at the other end. I saw the picture and there was literally blood dripping out of rather largish ulcers. She never has fresh looking blood like my son does who has more rectal/leftside diseas (and takes rectal meds for flares). Her blood is darker and "older" looking and she doesn't often have true watery D.

For that reason, I'm not sure if rectal meds would make a difference for her, but I will ask her doctor.

She otherwise feels great. Dancing and playing all the time, happy, etc.
Julie

Mom of Son 18 UC dx 07/02, Lailda, Azasan 100 mg, Primadophilus Reuteri, Zyrtec, Iron, Vit/Min

Daughter 10 UC dx 08/07 Prednisone 5 mg, Colazal, 6MP 25 mg, Culturelle, Iron, Vit/Min.


songlady
Veteran Member


Date Joined Aug 2009
Total Posts : 3250
   Posted 10/23/2009 3:24 PM (GMT -6)   
Keylime -
As you know from my sig, I've had UC a long time.
From about 6th grade on, my son missed a lot of school with vague "stomachache" complaints.

He had had kidney stones from age 4 - calcium ones, not UC-related. The calyxes, sp? - the collection system to one of his kidneys was overly large and deposited more fluid into the kidney than could be processed, so stones would form. He'd had a lithotripsy in second grade and has, with meds, been fine since then - but has been oversensitive to abdominal pain because of all that. So with his complaints, I wondered some about new stones. I wondered about "school avoidance" and researched that. I made an appt with a psychologist I know - and my kid wouldn't get out of the car to go in, told me I was the one with the problem!

As we got to about his 8th grade year, he started in with other odd complaints: blurry vision, a hurting ankle, sore throat.... in retrospect I think some of it might have been extra-intestinal UC stuff - but some of it might have been that he just knew he needed to be seen by a doctor. We saw a lot of the pediatric docs those years!

He complained so much of stomach complaints that one of the docs sent us for "stomach" xrays which seemed to show constipation.
What was going on in the bathroom? I don't know; he was a boy at the age where he didn't volunteer info and I didn't push.
In spring of his 8th grade year he went to a "Y" camp for the weekend with a friend - something he had SO enjoyed in the past - and he came home listless, said he had not enjoyed himself because he had to go to the bathroom all the time. The alarm started to sound in my head.

That was a vacation week (April vacation week) from school, so we spent time together and went on an outing which involved lunch. After we ate he needed to RUN to the bathroom and it was at that moment I KNEW.
I asked about blood and he said, well, yeah.

Our pediatrician got him in with a pedi. GI within a week or so. He was sick enough he was home from school all the time... she scoped him the first week of May - pancolitis. Put him on Pred and Asacol.
And wrote whatever letters she needed to write to have him removed from school officially, and we requested a 504 Plan..... and he finished the year with tutors. He left school April 13 for vacation that year and never went back.

He responded well to the pred, though he gained weight and became hyper. But by mid-to-late summer he was off it.

The doc also recommended probiotics but I hadn't looked into then. They gave us samples of Digestive Advtange and it seemed to make my tum hurt so we discontinued it. (Now I'm the Probiotic Poster Girl - lol)

He has done well on Asacol ever since! He takes 8 a day. This past year he finally (at age 15) had something of a growth spurt and his voice changed.

The silver lining with him is that I've lived with it so long and I tend to research things, so I've been a pretty good coach. I've worried that he's had to rely on me in all those complicated ways right at the age he might have been starting to separate... but I think we're doing fine in that regard now.(LOL)

His doc sees him 3 times a year and has bloodwork done then. She says when he's been in remission for 2 years she may put him on Lialda. On the one hand, that would be great, and on the other, "if it ain't broke...."

His freshman year of high school I had a 504 Plan put in place just in case. He was given a laminated lav pass and his Guidance Counselor spoke personally to each of his teachers.
Every teacher but one was understanding. She said to him, "If you can, I'd like you to HOLD IT until class is done!" First class of the day, too. He missed so much - afraid to go in - that he failed. I should have intervened early on, but I didn't want to baby him, wanted him to learn to cope.
Since that year I haven't done the 504 - it's a small school and I figure it we needed to instate it we could do so quickly.

I hope his isn't too long - that's the story. How old were your kids when they were diagnosed? And how do you deal?
Diagnosed UP 1983, Azulphidine
Diagnosed UC 1986 Prednisone almost 2 years
Asacol - 16 pills/day
Metamucil - 2 doses/day
Cortenemas until recently, Rowasa as of 9/8
VSL#3, Ultimate Flora Critical Care
Vitamins, Calcium and D,Flax Seed Oil
Bee propolis as of 9/2, melatonin as of 9/14


keylime
Regular Member


Date Joined Jun 2007
Total Posts : 358
   Posted 10/23/2009 8:17 PM (GMT -6)   
Songlady, thanks for sharing your son's story. My son was dx at the age of 10. I'm certain he had it for several years before then as I can remember times when he was much younger and there would be times when there was loose stool and what appeared to be blood. On two separate occasions I even called the ped. and they would say that it is almost never blood and that it was likely something he ate of a virus. Finally, I took him and a specimen in and they were like, oh yeah, that is definitely blood, ugh! I'd guess he has had it since about 5 or 6 maybe even younger.

Similar case with my daughter. I actually first took her in for blood in her diaper when she was 5 months old. Doctor said yes it was blood, but likely from a fissure from pushing, but she was breast fed only at that time and didn't even have formed stool. Over the early years she would have blood tinged mucus. Even after her brother was dx it didn't really occur to us or even his Ped. GI that she had the same issues because her blood/mucus was more linked to formed (bordering on constipation) stool and it never lasted more than a day or two. Finally at the age of 8 she had a longer lasting flare and then her stool became looser, pain. Took her in for labs and they were all out of whack. Scope showed moderate to severe pancolitis. So, dx at 8, but I believe she had it from the time she was an infant.

How do I cope? Probably not that well. This message board and DragonPack have helped a great deal. I try to keep my faith in God strong and honestly, antidepressants and xanax when things get bad. 2007 was my rock bottom year - my son was just recovering from his worst flare ever that had lasted over a year when daughter was dx. I honestly almost lost it. I couldn't eat or sleep. I was down to almost 110 lbs (I'm 5'7"), my blood pressure was so low. I now feel like I have PTSD from that time. Just hearing a bathroom door shut freaks me out, especially in the middle of the night<shudder>.

How do you deal with having it and knowing that your child has it, too? Do you have other children?

The thing that really broke my heart was when we came home from the hospital when daughter was dx, her brother cried harder than anyone - because he knew what she would have to live with.

Thanks again for sharing your story!
Julie

Mom of Son 18 UC dx 07/02, Lailda, Azasan 100 mg, Primadophilus Reuteri, Zyrtec, Iron, Vit/Min

Daughter 10 UC dx 08/07 Prednisone 5 mg, Colazal, 6MP 25 mg, Culturelle, Iron, Vit/Min.


keylime
Regular Member


Date Joined Jun 2007
Total Posts : 358
   Posted 10/23/2009 9:09 PM (GMT -6)   
Update. She had a bm this eveining. It looked better - more formed and less flaky, but she is in a little bit of pain. Enough that she asked for the heating pad and is laying on the couch. It's 9:00 here so I'll tuck her into bed soon.

No blood or mucus.

I REALLY HATE THIS DISEASE!!! I should be happy that it is not worse, but I just can't stand to see my child suffer and know that I can't make it go away!!!

Thanks for listening to me!!
Julie

Mom of Son 18 UC dx 07/02, Lailda, Azasan 100 mg, Primadophilus Reuteri, Zyrtec, Iron, Vit/Min

Daughter 10 UC dx 08/07 Prednisone 5 mg, Colazal, 6MP 25 mg, Culturelle, Iron, Vit/Min.


ElephantPipe
Veteran Member


Date Joined Jun 2009
Total Posts : 1799
   Posted 10/23/2009 9:17 PM (GMT -6)   
My poo's been like that lately since I've been on birth control, I don't like it. At least with the Sprintec I could tell if I had inflammation but with Depo I can't. Urg lol. I dunno... milk formed mine up but it seems for most UCers it would do the opposite lol
19yr old female diagnosed with UC (mod-sev pancolitis) in 2005 at age 15
125mg Azathioprine 1xday
2000mg Fish Oil 1xday (out) / 500mg Turmeric 3xday /
450mg Boswellia 2xday / 400IU Vitamin E 1xday /
2 Fiber Choice tabs 1xday / Depo for birth control
Arthritis in both knees
Also: asthma, acid reflux, and Reynaud's Syndrome


songlady
Veteran Member


Date Joined Aug 2009
Total Posts : 3250
   Posted 10/24/2009 7:50 PM (GMT -6)   
Keylime - I can't imagine one's kids being sick and/or dx so young! I really feel for you and with you! I do wonder how long my son had it before I woke up.
He is the younger of my two boys. My firstborn is 3 1/2 years older, in college, and so far has no issues.

We so wanted kids - I was dx before they were born (I was having trouble conceiving and that's how I was dxed - I was anemic) and I just put the thought of genetics out of my mind. When my younger was dx, I had to deal with the knowledge he inherited it from me. I'm sorry for that. But... is his life joyful and worthwhile? Yes, very much so! So I've been able to put aside guilty feelings. He is a more empathetic person, a deep kid, for all this.

What I've noticed mostly is that since his dx, I have been aware that he watches how I handle flares - so I've been super careful to keep a positive outlook and to keep on with life. No maoning and groaning for me! lol

I can relate to the PTSD - if he's in the bathroom in the wee hours I freak!
A year after his dx, my husband had a horrible bout of eye trouble - a torn cornea that then got infected. He was within hours of losing his vision, and for 6 weeks I had to drive him daily 25 miles to a specialist. Between the two of them I thought I was going to lose it.
BUT - my gut was great during all that! Go figure, the obvious stressors don't affect me.

I remember years ago there was a book in the town library - "My Son, My Daughter" or something - about a mom with 2 kids with UC. I didn't read it then, but if I ever have time I might look for it now....
I would be glad to email you privately if more correspondence would be supportive to you. You sure have your hands full.
We can deal with bad stuff happening to us, but to our kids, it hurts so much more!
Diagnosed UP 1983, Azulphidine
Diagnosed UC 1986 Prednisone almost 2 years
Asacol - 16 pills/day
Metamucil - 2 doses/day
Cortenemas until recently, Rowasa as of 9/8
VSL#3, Ultimate Flora Critical Care
Vitamins, Calcium and D,Flax Seed Oil
Bee propolis as of 9/2, melatonin as of 9/14

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