New to group

Hi Hels72 Welcome to the forum although I'm sorry you have found yourself here. Feeling down is totally normal and aloud. The treatment while not a walk in the park was not as bad as I expected. As a general rule it is highly successful and once you get started the time will pass quickly. Start moisturising everything in the area now to get your skin as good as possible before you start treatment. I'm unsure what tips to give you as a lot of issues revolve round having a poo which as you have a stoma I'm assuming you won't get. Everyone here is either going through it or out the otherside, we will all be here for you however you need and do are best to answer any questions you may have. Sending hugs. Xx

Thank you for your welcome. 

Hello Hels72 

A warm welcome to the forum although I am sorry to hear of your diagnosis and about the added complication of Crohn's disease.  The silver lining to having a stoma is the further into treatment one gets that loo visits and especially opening the bowels can be really challenging and thankfully you won't have this.

The disbelief, denial, fear and apprehension are familiar to all of us who have been on this path and you really have come to the right place to talk to others who know exactly how you feel.  There is no subject off-limits here so please don't hesitate in asking or sharing anything at all.  There is always someone around to help.

Please let us know how you get on next week - the first day of treatment is a long one but then subsequent visits are very short.  Keep a calendar and mark off those days!

Big hug

Irene xx

Thank you Irene. Pre assessment Chemo appointment tomorrow, already got my tattoo marks for my radiotherapy 

Hi Hels72 ,

Apologies for being a little late in replying but another warm welcome from me to the MacMillan Online Community, I hope you find the forum a source of support & comfort during your upcoming treatment. 

I remember feeling exactly the same when I received my diagnosis, complete disbelief! It’s a lot to get your head around right?

The stoma sounds like a wise move considering you also have Crohn’s, have your team mentioned if there’s a possibility of a reversal in the future or are you going to keep it indefinitely? I can assure you it will take out the discomfort of bowel movements during & after treatment, they’re definitely no fun but it’s one less thing you’ll have to worry about.

I don’t think it’s abnormal to be having down days, I had days especially between my diagnosis & starting treatment where I couldn’t see past my diagnosis & felt in the depths of despair. Hopefully like many of us here you’ll begin to feel like you’re regaining a little control once you’re in the swing of your daily treatment appointments.

Wishing you the very best of luck for next week, let us know how it’s going if you feel you can. 

Nicola 

Hi Nikki65

Thank you for your welcome. I don’t see my surgeon until the end of October, but nothing has been mentioned about a reversal of my stoma. To be quite honest it’s been good for me considering the problems I was having with my Crohns, it has made going out much easier, no rushing to find toilets and more importantly no cramping pains which was debilitating at times.

Hi again Hels72 , I know a couple of people that suffer from Crohn’s & completely understand how debilitating it can be so I can appreciate that the stoma has made things easier for you, remember also that even if a reversal is mentioned at all it’s ultimately your choice, if you feel you’re living better with it then go ahead & keep it.

Many people whilst having the pelvic radiotherapy suffer bowel disturbances as the bowel gets irritated by the radiation & have some diarrhoea during & sometimes for a while afterwards, the unpredictability of this can hinder people getting back to living their lives post treatment & again having a stoma although they can still misbehave is going to help massively with this. 

On the MacMillan site we also have the Ileostomy, colostomy, urostomy and any other stoma support group which you may find useful, you can join just as you did here, you may pick up some useful hints & tips. 

Know we’re here to help support you however we can. 

Nicola