Biofeedback therapy

[Bouela]

My dd 12 has had tummy and bum problems on and off for ages but for about a year she had just intermittent constipation and diarrhea. After having blood in her diarrhea she was found to have a small fissure and to be badly constipated even though she seemed to be having diarrhea.

Over the last few months shes had I think every test and investigation of her bottom possible. Nothing was found apart from anorectal manometry showing weaker than optimal muscle tone to bear down (she couldn’t push out the balloon and her push strength in the test wasn’t great but her squeeze was excellent) but dd says that by then she was was really tired and her bottom too sore. She’s been on laxatives, softeners and high fibre to try to keep her cleaned out but still keeps getting backed up.

She’s been referred for a course of biofeedback therapy to work on the strength of her muscles but she’s refusing to go. The doctor says the fissure has healed but she still says her bottom is really sore (she was in a lot of pain for days after the manometry) and it does look red and sore despite soaking it after poos and doing lots of Vaseline and nappy rash creams.

I really want to try to finally solve her constipation but worry that if I force her to do the biofeedback therapy when she’s resistant and complaining of pain around her bum it might actually prove counterproductive. Any advice appreciated.

Oh my goodness, your poor daughter. Feel so sorry for her.

My only advice is when I have sensitive issues around that area, I wipe with alcohol wipes for a few days ( like the ones if you are cleaning a wound). Making sure I really clean and that really seems to help. Obviously this is just the outside area. Keep a box next to the loo. Cant flush these though.

Thanks for that advice. Anything is worth a try!

@Bouela What a tough one for your daughter.

Is it possible to ask the doctor she’s under/their secretary, what they tend to do in that situation? I know with lots of these things, there can be a bowel clinic nurse or the doctor themselves who could chat to her about it. Explain she’s anxious to the doc/secretary and why you’re concerned. A family member of mine had issues (not the same, but related) and reassurance and clear info from the nurse really helped. I’m sure they will have come across similar situations before and (hopefully) have a way to help.

The doctor we are under was fantastic I thought right until we got to the point where anything major wrong with her bowel/colon/rectum was eliminated and since then I feel like he’s been a bit dismissive. We have to see him again in just over a month and I suspect he’ll possibly discharge us with a diagnosis of constipation/IBS and a laxative prescription because I think he’s done every test there is.

I did speak to the person we’ve been referred to for the biofeedback and asked if it would be possible to just try an initial session where dd can work on some muscle and maybe breathing exercises but keep her pants on and not have the probe in her bum. She was really nice and sent me a pdf with some things like that which dd could do herself at home but said it just won’t work for her like biofeedback will to retrain her muscles (during the manometry they observed she tends to use her stomach muscles rather than her bottom muscles to push when doing a poo and biofeedback will help to identify that by seeing the difference on a screen).

Would be interested to know if people have had positive/negative experiences of biofeedback

because I'm just trusting what I’m being told. The right thing to do as a mum is probably to just follow the medical advice and try to get this sorted but the guilt if it doesn’t work or backfires and makes things worse is strong.

I feel so sorry for your dd and for you because this sounds awful.

The first thing I'd say is that even with IBS or constipation she should not be having a really sore bottom all of the time. Where exactly is the pain and is constant or just after a BM? Is she still having hard poos? Could she have piles? An absyss? Could there be an issue with her anus or sphincter that might need further treatment? When you see the doctor in a few weeks I'd be pushing for treatment or at the very least ways of managing the sore bum because this will make the constipation worse.

Secondly, you say that she's had a lot of examinations etc in the past few months so could these have created anxiety for her that's causing or at least contributing to some of the issues? It might be worth taking to her a counsellor so she can talk about what she's been through especially because she's at an age where talking about your bums/poos never mind having your bum out to strangers to be prodded and probed is not only embarrassing but possibly traumatic for her and she'd be justified in saying no more. My sister was in her 30s when she finally went to a therapist to discuss a traumatic hospital experience when she was 11 that she found so humiliating it had haunted her all that time. Talking to a counsellor or even other kids who are having biotherapy first can't hurt.

Thanks so much for your advice.

The GP and consultant have both said they can’t see anything inside or out now like fissure or hemorrhoids etc so the soreness is likely just irritation/sensitivity around her anal area. It’s something I definitely hope consultant will have some ideas for though.

She certainly went through the mill and none of it was pleasant but we talked about it a lot all the time and I don’t think she’s traumatised. I think the most embarrassing thing for her was the chronic diarrhea she was having before because she was terrified of accidents. Luckily, while we have to stay very vigilant of her getting backed up, she hasn’t had diarrhea at all since she had the big clean out. I think for her an issue might be that she went through all these horrible procedures and still isn’t cured so what’s the point so I don’t think she sees the incentive to undergo anything else. I think speaking with other kids who have had biofeedback is a genius idea because they might be able to persuade her of the benefits.

@Bouela Ah, yes have come across that in some doctors. I honestly would retry the biofeedback person. It needs to be dd talking to them, even if you make the phone call. She needs to hear why it’s important, what could happen without it, how it is meant to help etc. I’ve always found it’s far better for them to speak to the child to allay worries. I agree with speaking to other kids who’ve experienced it and had a positive outcome. I can see why the fear would outweigh doing it when so much has been done and not helped, but I’d encourage that this is the actual treatment for the low muscle tone, whereas lots of the previous treatment was sorting out the acute constipation. Much love to both of you, these types of situations are so difficult.

(My ds has a serious kidney condition, so we’ve had lots of doctor contact.)

The poor little thing.

She wouldnt be able to do the biofeedback if she had any kind of numbing cream or injection to the area because the whole point is to feel and activate the anal muscles but you could try a hydrocortisone cream or suppository to help with any existing pain before her sessions and I'd recommend only asking her to do what she can do the first week even if it's only ten or fifteen minutes and gradually building up week by week