Watery stools...lots of them

[Supermom]

I decided to get a second opinion and my son had his third colonoscopy done the end of December. There was inflammation in the colon but the terminal illium looked normal. Although he does not complain much throughout the day, I know he is in pain. But when he is on the toilet having a bowel movement, it's unbearable for him, alot of times even crying. He wakes up and the first thing he does is go to the bathroom and will be in there at least thirty minutes. Lots and lots of gas (said that hurts the most) and the stool comes out like water. The morning stool is usually always brown in color, then gets an orangy color throughout the day. He is in the bathroom at least twice to three times before even getting out the door for school. School starts at 7:30 and in first hour he is usually in the nurses office using the restroom at least 3-4 times. Sometimes he goes once or twice in the afternoon. When he gets home he may go once and then later evening he usually goes.

He started Methotrexate last Friday. It was only a half dose. He did get a headache and was kind of emotional but no nasuea. Here is what else he takes:
Colazal
Probiotic
Zyrtec
Zoloft
Folic Acid
Multivitamin
Remicade every six weeks
Canasa at night
Allergy shots every other week

His urgencies are so frequent that he wears a depends. And he has had several accidents. He is not celiac but we have cut out a lot of gluten from his diet (he does not want to go full gluten free). He is also doing some chiropractic care.

I feel so bad for him and dont know what to do anymore. I have two different GI's that I am working with, who are at two different hospitals almost five hours apart (they both have agreed to work together). He has recently also had the urge to throw up/dry heave while going to the bathroom as well (and sometimes he has lost his supper). He was never one to throw up or have the urge throughout his year of being diagnosed.

Does anyone have any suggestions that might make his life easier? He goes to school as often as he can but gets embarrassed at all the times he has to leave class to use the restroom. I dont know if there is something to make his stools harden up? He is a very very picky eater and I struggle with it on a daily basis (mainly the supper meal). He used to eat breakfast everyday and now he dont want to. I make him grab a yogurt before leaving to have something with his morning meds. I am a single mom and doing this alone (with support from family and friends) and there are nights I just cry myself to sleep wondering if there is more I can be doing or should I make him quit eating things or should I give him more/less meds. I have visited a dietician and she recommended a low residue diet, in which the foods recommended he likes (not a big meat eater at all). If I gave him donuts and chicken nuggets he would eat it all day long but I know that is not healthy. He dont each much fruits and veggies, not sure if I should do like a V8 drink?

Any suggestions would be greatly appreciated! You all have been so helpful, and while I do not post often, I read this forum almost daily.

Thanks so much!

 

[Mylittlesunshine]

Hi they tried my daughter on loperamide
Which is immodium but my Lucy has reaction
From it, you could ask your GI for it
It ment to make diarrhea slow down x
Hope your son feels better soon x

 

[Patricia56]

Any significant change in his symptoms should be reported to his doctor same day if possible. Assuming he has not had this kind/severity/frequency/pain before then you need to call them today.

He should be tested for c. diff immediately if this is a new onset or the character of the diarrhea has changed. If he develops a fever and has 10+ bouts of diarrhea a day then you should go to the doctor same day or ER. Severe c. difficile infections can also cause bowel distension/swelling and severe pain. C. diff infections can rarely kill even healthy people so it's important to get this checked. They can get a reliable result of a test back within one day or less and, if they suspect c. diff, may go ahead and put him on flagyl, the usual antibiotic used to treat c. diff.

Even if this isn't new I would you record the frequency of stools and have your son rate his pain on a 1-10 scale and report that when you call with the new symptom information.

If they already know he's having that frequency/pain then I would call with the update on frequency/pain so they are reminded how sick he is.

You may want to ask about having him checked for SIBO - small intestine bacterial overgrowth. This might help explain the diarrhea despite the level of meds he's on.

Finally, he may need to go on prednisone for a while but this probably shouldn't be done until after they test him for c. diff.

As for using liquid formulas. I too have a kid with sensory issues. He was 10 at diagnosis. I get that all kids are different but my son was pretty sick. When I sat him down and really explained the treatment choices and some of the possible consequences of those choices (for example prednisone moon face, acne, stretch marks) and promised we would do 2 weeks to see if it helped and then decide whether to keep going he chose to do EN. We tried formulas (although I understand there are some that taste better than the ones we tried) and he couldn't stand the smell and/or taste. At that point he was smelling everything before he ate it (which drove me crazy) so I wasn't surprised he didnt' do the fomula.

What did surprise me was that he was willing to do the NG tube and use a pump to get the formula. His symptoms improved so much in 2 weeks that he stuck it out for another 6 for a total of 8 weeks.

I don't know if this information would be helpful to you with your son but if his sx are bad enough maybe he will be more open to this than you think.

I would make sure the c. diff and SIBO are ruled out too though.

 

[Supermom]

He was tested for c.diff three times. He was even put on Flagyl right after his colonoscopy just "in case" he had an infection. We then went to an infectious disease specialist three weeks ago and the tests all came back negative so he got off Flagyl. He has been on prednisone at least a handful of times, finally having his last dose last October. I am not seeing any blood but he has had blood in the past. When we did bloodwork at the end of November his inflammation levels were high..CRP was 44 and sed rate was 8.1. Then two weeks later we did bloodwork and both went down, CRP was 24 and sed rate was 1.4. He had bloodwork a couple weeks ago and CRP went back up to 38 but sed rate stayed lower. I know the methotrexate takes a while to get in your system, I just want him to try and get as comfortable as he can until then (if it will even help him). I am in constant contact with both GI nurses from both hospitals at least weekly.

 

[Supermom]

Oh, I forgot to add. He has never had a fever throughout any of this. And how do they do the testing for SIBO?

 

[Tesscorm]

How old is your son? Perhaps I missed it in your earlier posts??

I also suggest trying EN either 'exclusively' (formula only, no food) for a few weeks to try to induce remission or even as a supplement to ensure he gets some necessary nutrition.

My son was almost 17 when diagnosed but was also a very picky eater. If he had to drink the shakes for the 'exclusive' six week period, I don't believe he would have been able to do it. He used the NG tube. Once the exclusive period ended (July 2011), he has continued with the formula (and tube) at a maintenance dose. This has alleviated my constant worries that he does not get the nutrition he needs through his diet!! :thumright:

EN can be used with medication so it will not interfere with your son's treatment.

I hope the addition of methotrexate, or a change in treatment, can bring your son's symptoms under control!! :ghug:

 

[CarolinAlaska]

I second the EN option. We're going to try it soon ourselves.

 

[my little penguin]

Since you just started the Mtx it can take a while to work 4-6 weeks.
Can they give him levsin for the bathroom pain?
DS uses it when he is having spasms ( rare now)
When he was flaring it didn't work at all.

EEN could give his gut a rest while you wait for the Mtx to kick in.
If not then pred at least until the Mtx takes over.
Hugs

 

[Irene3]

Hi super mom. I agree with Patricia that you should let the gi know the symptoms, as they change. If he wasn't vomiting during the time he was diagnosed, there could by now, be inflammation in the small bowel, or even stricturing. Low residue may help with runny stools, but even when I am strictly low residue, even on humira which has improved my symptoms ten fold, I still have daily d. My 9. Y old daughter also has some undiagnosed tummy issues, so my heart goes out to you, being a single mum also, I know how you feel in wanting to help. Maybe ask for new tests like MRI ct, to see if there is stricturing etc. a lot of times blood tests don't show any diff. Best wishes xoxo

 

[kimmidwife]

Have you guys tried lomotil it really helped my daughter. There also was a medication she took right after her surgery which helps slow the bowel down. I am trying to remember the name. I think it started with a C if anyone else remembers. I know it was mentioned by some others on the forum.