difficult child 1 having major IBS issues

[gcvmom]

This has been an intermittent but ongoing problem since last summer, maybe longer. difficult child 1 has major constipation issues right now. He's been missing a lot of school because of the pain, too -- which is the biggest issue right now. We tried to do a cleanout last month, and it seemed like that particular weekend things got better, but they quickly went back to the same old scenario of urgency with no results, along with mushy bm's, pain, nausea, and then eventually he'd feel o.k.

I got serious about adding fiber to his diet -- oatmeal for breakfast daily, high fiber sandwich breads, fruit, increasing liquids (though I'm not so sure he's all that compliant at school). But then it seemed like that just backed him up more.

Last week he alternated between pellets and normal bm's, sometimes with pain around a 4 on average. Yesterday he had diarrhea three times and woke up with belly pain and feeling nauseous. He made it through his first two morning classes, then called to be picked up because he felt so crummy. I felt his abdomen, and tho I'm not a doctor, it sorta felt like there was a lot of stool in there... it was uncomfortable for him to have me pressing, too.

His GI ordered an abdominal xray yesterday and faxed the paperwork to us. We decided to go to the facility by his pediatrician's, but they told me since the GI was not part of their group, the pediatrician had to rewrite the orders so I had to go track that down. He said he'd fax the results to the GI, but as of right now I still haven't heard back from either and left a message for both.

I strongly suspect they'll come back and say he's FOS (full of stool), so I'm going ahead with the Miralax cleanout instructions they gave me last month. This is just getting so incredibly frustrating and tiring. I never thought this would be so hard to get under control!

 

[Shari]

Wow, poor kid.

Will he drink prune juice? Then again, you say he's alternated between one extreme or another....so that's not even a real solution.

Will dance and extra dance for you guys. Poor guy.

 

[CrazyinVA]

I'm sorry I know it's very frustrating. Hope the miralax does the trick.

 

[gcvmom]

Well, he's finished his six doses of Miralax with apple juice and ginger ale. Now we wait... and only clear liquids in until clear comes out. What a fun Friday!

 

[gcvmom]

GAAAAAAAAAHHHHH!!!!

The pediatrician just called and said the radiology report did not say there was anything remarkable in the xray. So he's not full of stool, apparently. I just want to scream.

Well, I'm still keeping him on liquids today until I know everything's out. Then he's going to start slowly on a bland diet for the weekend.

Hopefully the GI will call later today with her 2 cents. This is just crazy.

 

[Shari]

Well, the good news is....if there's nothing in the way, clear ought to be coming out soon....

Ugh.

I am SOOOO sorry.

 

[DammitJanet]

GCV...I know this is aggravating and painful and annoying as heck but I have to tell you, I get a kick at the FOS. I remember a few times when my IBS has been acting up horribly and I ended up in the ER thinking I had to be dying of something horrible and the doctor walks in and blandly says...well young lady, apparently you are just...full of s*it! Literally! I could have killed them!

I never thought THAT could hurt that badly.

 

[witzend]

That's just miserable... I'm so sorry that you have been unable to get this figured out for so long.

 

[jal]

Poor kid. I hope he'll feel better soon. Such a tough thing for BOTH of you to deal with. UGH!

 

[tiredmommy]

G-

My gastroenterologist told me that my recurrent diarrhea was actually a result of chronic constipation. I'd get so backed up that loose stool would push around the hard stool. I'm currently eating 30+ grams of fiber daily and taking Align probiotics. I drink over 60 ounces of liquid a day. It's helped but I still struggle. I really feel for difficult child 1.

 

[KTMom91]

Poor kid. Hope his system settles down, and you're able to get some answers soon.

 

[susiestar]

I am so very sorry. This is SO painful. being that backed up hurts then when it pulls away from the walls of the bowel it hurts more and leaves the wall tender and irritated. It is an awful pain too.

I am not sure I would bank on the report from the xray. When Jess was backed up at Christmas time two years ago it took4 people and 5 days to figure out that the area that was stool was actually something. I cannot remember what the area looked like but it was clearly (to me) different from the other areas of the xray. Same xray, but the different docs just didn't "clue in" although that is exactly what they were looking for.

When was the last time he was scoped down there? It may be time for that to see if there are any problems they can fix to help with this and to make sure he doesn't have diverticulitis.

Have you tried the milk and molasses enema? It wasn't fun but it worked better than two bottles of miralax and a gallon of golightly and 4 fleet enemas in two days (plus a whole bottle of benefiber and high fiber foods!).

Are any of his medications related to narcotics? There is a fairly new shot out that works on certain receptors in the gut. It keeps them from binding to opiates and it makes you poop. The results show up in 15-30 mins after the shot and WOW are the results dramatic. I am wondering if maybe the natural stuff we create (endorphins etc...) to help with pain are interfering. The shot is called relistor and I can vouch for how it works and how dramatic it is. After one pain medication change I didn't go for 3 weeks. NOTHING worked, not even going off the medication for 3 days. The doctor warned me not to go to the mall and try it - he had one frantic call from the women's restroom at the mall after a lady had done the shot there rather than waiting the 2 hours it took her to drive home. Nothing he could do but tell her to ride it out and have someone give her more toilet paper. It was the first patient he rx'd it for, so he warned the rest of us about it!

If you want more info on it, I can pull it out from the shots I haven't used.

If he wants something different for his sandwiches than bread, there are some flat bread wraps called Flat Out! that have a LOT of fiber in them. You can check them out at www.flatoutbread.com . The original wraps don't have that much fiber (3g in the Italian Herb) but the light italian herb has 9 grams of fiber! Those are the only flavor I have tried and the light is WAY better tasting than the original. Even my dad thought so and he HATES light/healthy stuff!

Just thought it might give him a little variety. If you click on products there will be a list down the side. Click on the item you are interested in and it will give you the nutrition info and ingredients. The light original is 9 g fiber if herbs are a problem.

Give him a hug for me. I know how miserable he is. It hoovers to have that on top of the other stuff.

If you need the info on the milk and molasses I can pm it to you.

 

[gcvmom]

Susie, when you described Relistor, it made me think of low-dose naltrexone which is an opiate receptor blocker... then I googled it and turns out that's EXACTLY what it is! And this is so ironic because I'd asked the GI nurse to quiz the doctor on whether she's ever rx'd low-dose naltrexone for IBS -- because there was one very small open label study that showed it had some benefit for people suffering from IBS, but that it needed more controlled studies for more data and proof. Learning Disability (LD) Naltrexone is also used for Crohn's disease and a few other autoimmune disorders with pretty good success. Serenityprayer tells me it's the only thing that's truly put her Crohn's in remission.

The GI never called me back today... I'm now doubtful that difficult child 1 really was constipated because all his stools today were greenish diarrhea, which indicates it's flying through his colon and the bile does not have time to break down. I know about stool leaking out around an impaction, but nothing solid has come out at all today.

 

[susiestar]

Nice to have more info on it. I just know it wasn't a fun experience, hurt like the dickens actually, but was MUCH better than the way I had been feeling.

I hope you can talk to the GI doctor Monday. Sorry difficult child 1 is still in pain. It sure sounds like another scope might be a good idea. Cause SOMETHING is wrong.

 

[gcvmom]

His pain is better this weekend, but he's still feeling the urge to go, but not going every visit. And as of last night when he went to bed, he'd still been having D for about 36 hours. He's not up yet this morning so I'll have to update the log I'm keeping later...

I think we'll try TM's method of slowly increasing fiber to the RDA and really, really pushing fluids. We're going to have to drill this into his head so he takes an active role in his treatment -- I can't be with him 24/7 and frankly, I'm tired of nagging about his habits as it is.