Lymphoma of CNS - experiences

Hi again and well done navigating across to the group. Bowel Problems following some of these strong treatments is unfortunately normal as the bowel, gut, stomach linings gets severely affected. 

I have a different type of NHL and most likely a different treatment journey (Hit my Community name for my story) and following my second Allo (donor) Stem Cell Transplant (SCT) I had about 4 months of bowel problems….. for me, my SCT team advised me that I need to ride out the storm as things would improve over time……. and it did.

But it was very hard work due to the amounts of time going back and forward to the toilet and being caught short a few times. The only advise I was given was eat as normal a diet as I could (but that was hard as I was off food) and I had to drink a minimum of 2 litres of water plus other drink to keep hydrated and to keep flushing my system.

What made this even harder was I was not able to walk unaided so had to have help every time I went to toilet this was due to my doing bed bound for about four weeks during my second SCT.

The good thing (if I can say it was good) was apart from attending clinic appointments often two times a week (some required an 8-9 hr round trip drive to Glasgow) I was never anywhere as I had to keep isolated from people as my immune system had not recovered.

What are her clinical team saying?

Thanks Thehighlander for sharing your story. I hope you are doing well now. The oncology team have been pretty clear that the bowel problems experienced by my mother are due to nerve damage caused by the disease process and not by the treatment. The issues she has been having were one of her symptoms which eventually led to her diagnosis of lymphoma of CNS.  Dr's tell her that the bowel incotinence is unlikely to improve at this stage but have not given her any other treatment options. She is keen to know if there are other people with a similar diagnosis who also suffered with bowel incontinence and if there were offered options such as a colostomy bag .

Sorry to hear this - I have been helping in our various Lymphoma groups for over 5 years and as far as I can remember I am not aware of anyone posting who have had to go down the colostomy bag route.

To widen your search you may want to check out Lymphoma Action who have various Lymphoma Action Support Platforms that you can have a look at.

They also have a great Lymphoma Action Buddy Service where your mum may be able to be linked up with someone who has walked the same treatment journey.

They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.