Hi all,
I've just been sent home following my stem cell transplant, transplant 15/4, discharged 2/5 . I'm sure I'm echoing what many have said before, that I'm thinking it was premature because I was (and still am) having a lot of issues which I don't know how to manage at home.
The main problem is awful abdominal pain and stomach issues which my CNS said is the mucositis. I did get mouth and throat ulcers which all cleared up 4 or 5 days ago, but the pain in my stomach is ever-present and has been ever since transplant. Scans showed nothing untoward in my abdomen so I assume it is indeed mucositis.
I was taking morphine for this, but they can't discharge you with any morphine so they stopped me taking that (think it worked reasonably well) and am now on paracetamol 4 times daily. But it's useless.
I have persistent pain throughout my stomach as well as cramping, eating and drinking is a nightmare. I dread having to use the bathroom.
All I was given to specifically deal with the mucositis is the one mouthwash pictured, but as you don't swallow it, not sure how it can help your stomach?
Will this pain subside on its own as the mouth/throat ulcers are gone?
Any help you can give would be greatly appreciated.
Hi Little-Else and well done getting through the conditioning and transplant part of your SCT….. now it’s all about navigating the post SCT world.
Actually getting home on day T+17 is about normal. I was home on day T+17 with my first Allo (donor) SCT then on day T+20 first my second Allo SCT.
I actually had no mouth issues during my 2 SCTs and I put this down the using the two pack oral rinse I used called Caphosol 8 times a day as well as the Nystatin 8 times a day.
I had no stomach issues during or after my first Allo SCT…… but my secind Allo SCT was a different story.
I was so sick on the night after receiving my brothers cells my heart went crazy so landed in the CCU a few times.
It turned out that the effects of my conditioning FluMelAlem30….. the MelphaIan especially had stripped the lining of my stomach….. is this the same as Mucositis?….. I have no idea.
But my added problem was that a CT a few days later found that I had also developed a massive Hiatus Hernia…… it’s so big that it actually fully encloses my stomach….. so it took about 4 months, controlling the pain as well as living on regular small cups of liquidised home made soups and a lot of trial and error to get the right meds first ne.
The lining of my stomach just needed time to recover but we had to help control the effects of the HH…. So we tried a few different PPIs - Proton Pump Inhibitors and eventually found Lansoprazole am & pm works for me.
So as you say the mouth wash you are using is not going to help your stomach so you need to get back to your team and ask for something specific that helps your stomach.
I am 9.5 years out from my second Allo SCT….. I still have my HH as it’s just dangerous to touch it but if it becomes a problem then it will be a challenge what to do!!
Hi Alison Little-Else we all need to do what needs to be done to get out the other end of this long road
Lets look for the omeprazole to do the job….. for these drugs to work best they need to be taken 2 hours before or after food with large glass of water as this helps them to heal the lining of the stomach.
