My husband, 2 years 6 months post-allo SCT and son, 3 months post-Auto-SCT are both experiencing similar digestive problems with indigestion, etc. Specifically, constant pain, bloating, burping, and disrupted bowel behaviour. It doesn't vary with diet - we've tried various paths, though eating little-and-often helps a bit. Paracetamol doesn't touch the pain. Buscopan has been suggested by the docs but doesn't help either. Gastroenterology appointment for my husband awaited...when they can fit him in [!].
However,my question is whether this is typical of post- SCT issues in others' experience? If so, any ideas?? It's the pain that's most concerning and limiting.
I'm Rachel- Lead Nurse here at Anthony Nolan. Thank you for using the forum and for sharing the problems your husband and son are experiencing. I'm sorry to hear that you've had so much experience of stem cell transplant in one family, I'm sure its been a difficult couple of years for you all.
The initial thought with gastro problems following Allo SCT would be GvHD but I assume this has been ruled out by your husbands team? Has he had these problems continuously since his transplant? Was your son experiencing any problems prior to his SCT?
As you may have read or been told, chemotherapy associated with both Allo and Auto SCT causes a great deal of irritation to the all of the mucosal linings of the GI tract, from the mouth right through to the ****. This can take a while to repair and it can continue to be easily aggravated. I note that you've said there are no foods that aggravate the symptoms more than others, I assume from this that you have monitored eating and perhaps kept a diary, if not this might be a useful thing to do so you have it all written down to refer back to before the gastro appointment.
The other consideration is infection, has a stool sample for each of them been looked at? This may be something to consider with their transplant teams, often gut infections are easily transmissible and if they are in regular close contact/in the same household this may be the case.
Hopefully they are taking an antacid medication prescribed by transplant team/GP- to help with the pain and any acid reflux?
If you'd like to talk further about these problems you'd be welcome to call our helpline 0303 303 0303 and ask to speak to me.
I hope this reply has been of some help to you.
Thank you, Rachel for this reply. It has been most helpful. Not least because it has enabled a conversation and a bit more co-operation at home!! He's even agreed to the suggestion of an antacid. He took one dose a couple of weeks ago and declared it hadn't helped but has agreed to try again [I see it should be avoided for a couple of hours either side of his other meds though so will be advised by that].
Our son lives away from us and is being treated nearer his home but we saw him at the weekend so I wanted to include him in my question. Reading your reply it looks, as you suggest, as if his tummy problems are a direct result of his treatments. I will be able to pass this on to him to suggest he speaks to his team on the subject, for management advice.
My husband's symptoms were merely background but worsened considerably just before Christmas. They are now impacting our quality of life a fair bit. GvHD has been mentioned in the referral letter to the gastroenterologist - I will take up your suggestion of a diary .
No mention has been made of possible infection, though he has had a colonoscopy to rule out bowel cancer which didn't show any indication of inflammation etc. I will now feel able to query this though, in the context of his mildly raised temperature etc. [He takes his temperature regularly to keep an eye on it].
His GP has him on a blood pressure diary....so yes, there are times it all gets a bit overwhelming . Until, that is, we remember that we still have one another's company thanks to the SCT!!
So - thanks again - it's helped open options up to us, at least while we bide our time waiting for the gastro appointment.