Son was diagnosed with severe pan UC 11 months ago. Had an iron transfusion and has been on IV and oral steroids, sulfasalazine, mesalazine, azathioprine and now infliximab. The infliximab is working in that his colon is in remission BUT 3 weeks after his initial diagnosis (June 2014) he suddenly had absolutely no energy and consequently spent 6 months on the couch.
In dec 2014 we attributed the fatigue to the cocktail of drugs he was on and withdrew the azathioprine (infliximab continued) : temporary improvement and now he is suffering deep fatigue again and is missing school again.
He does not suffer tummy pain or ongoing diarrhoea : his only real symptom is crippling fatigue which is now affecting his mental well being. We are very concerned on a way forward for him.
Does anyone have any suggestions, has this happened to your child? Very grateful for any suggestions.
Very sorry for what your son is going through and what you're going through as a parent, worrying I don't know much except that infliximab and sulfasalazine has listed side effects of tiredness. Your son has been experiencing this for a very long while so his doctors should be trying to find out what is wrong, make sure to get him to tell them all his symptoms, even if it feels irrelevant. Also check to see if his lymph nodes are swollen or he says they're sensitive. They're behind the ears or in the armpit and can be a sign of an infection somewhere which the doctors can check out for themselves. I'd say the stress of it all is contributing the most to his tiredness, however sitting on the couch all day can also make it worse, I know he sounds very tired and probably won't want to but activity can help him, take him for a walk, even if its just for 10-15minutes and make sure he's on a high energy healthy diet. Try to cut out caffeinated drinks for a while like tea and fizzy drinks too and see what happens. Hopefully his doctors find out what is wrong soon, in the mean time, I wish him and you the best of luck x
Side note- supposedly soaking in water with a bit of mint crystals or breathing in 2 drops of peppermint oil on a handkerchief can work as a pick me up for tiredness, when I used to be so tired I couldn't move (I had malaria once from holiday), I had vaporub on my chest and back, morning and night and kept warm. Somehow it helps x
DGL and Zinc Carnosine got great reviews being effective on gut issues.
Have you enquired about giving him Acidophilus to help reestablishment of normal bacterial flora, or taking Vitamin K2. I read sterile conditions introduced in food manufacture stop microorganisms including beneficial flora from multiplying and being introduced into our body. -If cleared to take them they could be worth a try in the circumstances. My mother had U.C. I was worried my GERD symptoms would develop into U.C. down the line. When prescriptions failed. I took a Milk Thistle Complex that has helped. I only needed the one packet. I only suffer maybe once or twice a year now.(Four years on.) You could look into these and talk about a new treatment FMT with your doctor if all else fails.
These are just suggestions from a none medical background, but acquired through the Internet from interest of how other people have helped themselves.