Decisions to make-?Rectal Biopsy

[Anonymous]

Ian’s now 7 months old and a pretty happy baby (good!) but along with the completely watery stools-which are now every 2 days-he’s having MAJOR reflux again and bottle aversion. I know there are ups and downs but we’re still worried as it’s so bad, he’s actually crying quietly with big tears. We tried no lactose for one week (solutabs switched to capsules) but along with reflux increase it made no difference on his poops (however, he was on Baby Jardopholius which we now know had lactose). Doctor said we’ll do a stool reducing study-but again, how the heck do we get it? We’re going to try this weekend by taping a baggie to his little red and welted bum. Doctor suggested rectal biopsy (we said no) and sucrose test (yes-but their equipment is being fixed and we’re stilling waiting to schedule). Now, I’m thinking about biopsy again and wanted opinions. Here’s why-we’ve did no solids even though I’m SO convinced (as was feeding clinic) that the stool is connected to why he can’t eat anything. Especially since he ate rice before. We tried one oz of Nutramagin yesterday in the am mixed with Elecare to see if it could help normalize stool if osmolarity was an issue. He screamed for an hour(it never affected him that badly before-even a month ago we tried to switch for 3 days before stopping) later -pooped water-and was fine. Today, we tried the first solid in 3 weeks-banana. V. little-1/3 of a teaspoon. Same thing 1 hour later-crying and refluxing. He’s now asleep. I do not think this is intolerance. Not yet anyways-it’s always possible in a couple of days it would be one. We’re beginning to think maybe the barium enema we had wasn’t as accurate as we thought (they say biopsy is much more conclusive). I so don’t want to put Ian through anything else but he’s really in a lot of pain. Doctor let us up the prevacid (now 2 days) but he was on 30 when he got the ulcer so what is going on?

HAs anyone had the rectal biopsy thing? Any other suggestions of what to request. I just can’t sit by why this goes on…Infectious Disease doctor is on Monday thank god.

I’m just so depressed. I’m so tired of being sad. I feel like a failure because I can’t help him feel better. And, I know, sometimes you have to let it go-good and bad days-but my gut is so telling me this is not right because we really have seen no improvement on an overall basis-we’re taking steps backwards it seems.

Thanks for listening. (Gosh-I’m so whiny today!)

Tracy (Ian’s Mom) 9-26-05 Prevacid and Elecare

[Anonymous]

Oh Tracy – I’m so sorry you’re continuing to have such problems and
that Ian isn’t feeling well. I’m glad at least that Dr. M finally agree
to up his Prevacid at least but it’s so strange what else might be
going on… What else would the rectal biopsy show? Just Hirschsprung’s
or would they be checking for other issues too?

BTW, was so annoyed to learn about Baby Jarodophilus. We’ve switched to
Nature’s Way Primadophilus and actually noticed a difference already.
But I’ll post that in another thread.

I wish I could offer more help – but mainly only support here. Keep us posted and hope things turn around soon.

[Anonymous]

Tracy, I’m so sorry that you are no further ahead as far as answers. It’s so frustrating… all you want to do is to help your little baby. I really hope that the infectious diseases doc can help you. If he’s going twice a day now, maybe it will be easier to get a sample. When we were really desperate to get a urine sample for Hailey (and I mean REALLY desperate) I actually took one of those large freezer baggies and cut two leg holes out and had her wear it! Just know that you are certainly not a failure. Ian is very lucky to have such a dedicated mom who is trying so hard to help him to feel well.

Regarding the rectal biopsy, could you wait first to see what the infectious diseases doc tells you. I really hate to say that it does sound like c-diff. The eating activates the stomach and you get very severe cramping. It doesn’t necessarily happen all the time for everybody, but the cramps are something awful. The bearing down would be because he’s trying to get the poop out, and you temporarily feel better after that happens. (Sorry so gross).

I certainly hope that he can find some relief, whatever you decide.

[Anonymous]

just wondering why you would refuse the biopsy—–sounds like what he is going through now is alot worse than a biopsy would be. when we put our children through testing to help discover what the problem is, they are made pretty comfortable and most likely don’t remember much, if anything.

[Anonymous]

I would probably get it done. His problems have been going on for so long now that I think if it was going to go away on its own then it would have by now. I would speak to your doctor and find out exactly what is involved in the procedure and make sure you are comfortable with what they are going to do. The procedure might be unpleasant but pain with bottles, reflux and missing out on solids are probably not nice for him either. Hope you can find some answers for poor Ian, we will have our fingers crossed.

[Anonymous]

Tracy

I am glad the doctor finally caved in on the prevacid… about time. I know how helpless you must feel (i am there too most days) but you have to focus on the positives: you have a happy baby and you are doing everything you can to help him feel better. With babies, it takes tme to figure out what is going on with them and that is why it is so hard. You will get there i am sure.

About the biopsy, never heard of it and don’t know what it entails. Hopefully someone can shed some light on the procedure. At this point and after all this time, i would go for it. Easier said than done, but i was struggling with the kidney tests and after all i read, they are a def yes.

[Anonymous]

If they have run cultures & tests on stool samples to rule out things like C-diff, etc. then I would for sure go ahead with the biopsy. It should be fairly painless (if it’s via sigmoidoscopy or similar, I’ve had those w/ biopsy–no pain meds–& didn’t feel anything, only slight pressure b/c something is in your bottom! LOL! TMI, I’m sure!!).

It could lead to some very necessary answers & RELIEF for Ian. Keep us posted!

[Anonymous]

Thanks everyone. Yes, after yesterday, I think we have to do more testing. Ian has literally gone to being so uncomfortable he’s arching and grunting in his stroller at about 90 degrees. Feeds are taking an hour. I just cant for the life of me figure out what is wrong. If he’s on a high dose of prevacid (and he was first time we had ulcer) and just elecare, this shouldn’t be happening. As he gets older, now we’ve got weird digestive issues and things he could tolerate cause him so much pain. I’m convinced something is really wrong.

Karen-thanks for support as always! Rectal biopsy I think is mainly for hirschsprungs. Barium enema came up negative but biopsy is more conclusive. I myself was curious if it could pick up anything else. Yes, Baby Jar ticked me off too! Especially because we had to try compounded prevacid for a week and little did we know he was still on lactose! Dr. M is having us try VSL3-you have to specially order it and it comes on ice. Apparently she said it’s better then health food stuff (but who knows-she’s not always on target). They do make it with some dairy but they said they qualify it as a non-dairy product because it’s very little and removed in fermentation process. They said studies have shown lactose intolerant people have actually benefited and Dr. M says it’ll be fine. I’m still SUSPECT of course and it cost 75bucks for a small little bit-but I’m desperate! If it doesn’t work, I’ll try your brand though.

Lori-Your not gross at all! Your first hand info is very useful! Gosh knows I talk about my son’s bm’s more then anyone wants to hear. I’m going to see what ID dr says too-and I’m going to tape a baggie to his butt today and pray we see action (he actually poops once every 2 days now). Hopefully it will catch it and avoid urine. Also, thanks also for the kind words.

Christine-I’m not against testing at all. In fact, the opposite! Ian’s just been through so much in the last two months-endoscopy which ended up in hospital for a week, barium enema, blood tests, ph probe, etc. etc. Everything has been pretty normal except for ulcers and he literally screams at doctors now. I just always want to make sure I’m doing something for the good of Ian and not myself. I originally said no to biopsy because GI thought we didn’t need to have it done but I could if I wanted too. I thought the Barium test was enough. Now, I’m not so sure so I want to go forward. We even have a sucrose test coming up.

Thanks everyone else as always!

Tracy

[Anonymous]

Poor Ian. So when are the rectal biopsy and sucrose tests happening?

Where did you order the VSL3 from? How much do you use?

[Anonymous]

just looked up the VSL3 – interesting, let us know how it works. The
Nature’s Way seems good here so far but will keep the other in mind if
necessary.

Hope Ian’s tests are happening soon and he starts to feel better. Keep us posted.

[Anonymous]

Are you considering a suction biopsy or full thickness biopsy? We’re having poop issues too, and actually just went through anorectal manometry. If it had been abnormal, we would have had the suction biopsy done right then and there. We were told that there is a risk of excessive bleeding so the potential benefit does need to outweigh any potential risk. If this is one of your concerns, you could request to have an aPTT and PT (blood work) done to test for clotting issues.

I hope that you all are able to figure things out, and that he is feeling better soon. Poop issues are no fun.

Kelly

[Author]

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