GvHD

Hi Kirsty,

that sounds an excellent step forward, immunosuppression is a delicate balancing act, and they are so experienced at it these days. 

Sending hugs xxx

Hi Kirsty

I had GVHD of the skin and the gut. The skin was first but that was treated by UVB light in the "tanning" booths at the Royal London.. I still itch almost 6 years post transplant in the depths of winter so I normally sneak down to the local tanning shop and get a quick dose of "sunshine" which keeps me going for another few weeks.

With the GVHD of the gut it started slowly and got progressively worse. Then it just went crazy.. this was a year post transplant. My weight dropped by 10 kgs in 5 days and I was readmitted to hospital..

After tests of cameras and then swallowing a nuclear pill and CAT scans I was diagnosed with severe bile acid absorption.. The GVHD had been fairly low grade they think but had aggravated the gut so much that it had stopped absorbing bile acid back into the snall intestine which in turn meant the colon  then tried to flush it out of me!! Not pleasant.

The remedy was to give me cholesterol binding tablets, colesevelam, which bound the bile acid, removed it quickly and gave the gut time to calm down.

Once they had got me properly diagnosed the meds took effect within a couple of days and I was able to go home.. After around a year I weaned off the colesevelam and have been fine since.

At the time it felt bad (who wants to be going to the toilet 30 times a day!) but looking back I am thankful that the consultant sent me for the tests (think they are about £750 for the pill alone) and got me properly diagnosed.

I was immunosuppressed for just over 3 years in the end to make sure the GVHD stayed nicely under control.

It will get sorted out for you!

Oh Kirsty!  Big hugs for you and hoping it gets sorted quickly.

I've had gut gvhd for over a year, but it's finally burned itself out and I'm off all the steroids and looking forward to my immune system getting its act together at last. It's a miserable business, but you can get through it. 

Sheri xx

As always the support here is fantastic thank you for your stories and reassurance guys! Turned a wee corner and the bowels have calmed way down, bilirubin is within normal range and my walking is doing really well, I'm managing more and more each day! Only two bowel movements the past two days and the last one was finally thicker than pure water. "Real" food is now allowed so I'm just taking my time and eating very small amounts but soya milk and cereal is allowed, as are some sandwiches etc. Certain fruits like tinned peaches and pears, peeled mango, jelly and jelly sweets, some rich tea biscuits, plain cake, carrots potato and mushrooms - lots of choice! 

Hi Kirsty, this is great news........ and every person who goes through Stem Cell Transplant will have bowel stories

((hugs))

Hi Kirsty,

I am so pleased for you! That sounds like a good list of foods and maybe they are going to re-introduce them a bit more quickly than they did with me.

I’m really hoping this means you are back on the right path and can look forward to a good bit of recovery now. 

Have they given you any idea about a discharge date yet or is it taking things a day at a time at the moment?

Greg

This is better news, Kirsty. Really pleased for you. 

Alpro make soya yogurt that I had in hospital with gvhd.  They are also good. 

xxx

Long before I had AML, I had bad IBS and worked with an expert to find the problem. Also read a lot of books. It's a minefield. What helps one person makes someone else worse. Some things can be tolerated in small amounts or for a while, then suddenly it's causing a bad problem. You might tolerate a certain food, like carrots or tomato, if they are raw but not cooked. Or vice versa. Some people say they have a problem with bread therefore think it is the wheat - but often the culprit is the additives and preservatives - they routinely add soya to many brands, which upsets some people. I gave up dairy, switched to soya milk and was much worse. I found vegan cheese is often made of soya and nuts, so I stick to dairy cheese but in small amounts.

Hope you find the menu that suits you best.

Tessa

It's still a day at a time and because I still have four weeks of ECP scheduled I'd imagine I'll be an in patient for those, I know it can be done on an out patient basis but because I've needed blood, platelets and calcium before my sessions I cant see me getting out before they're finished. Which is a little bit frustrating because obviously I just want to get well and get home and I might find I'm well within that time but no, no mention of discharge yet. As the food is all still new as well we're on a watch and see method to determine what it does to the gut over the weekend. Still on the TPN and they're hoping to reduce it on Monday if all is well on the eating front.

((hugs)) how long does each session of ECP last? x