Just saying hi

Good morning Kirsty, welcome to the group and just to say being on here makes you feel less alone and somewhere you can vent your feelings, gain a bit of knowledge from those who have been through treatment but I will add your team are also very important when receiving treatment for advice. The waiting is really hard but they are not going to rush through something that is so important on getting right. I have no experience on Crohn’s disease but my daughter has chronic ulcerative colonitis and when she was first diagnosed they asked her if there was bowel cancer in the family. It makes me wonder if our digestive systems link the risk to cancers in our pelvic regions. Have you any family that can support you through this tough period of waiting and when you finally receive a diagnosis and a treatment plan? Having a stoma from what I have read can at least free you from some pain of actual bowel movements when going through treatment as I can’t imagine having to deal with that and crohns. Your emotions are completely normal and it’s what helps us through this. I am very glad you plucked up the courage to come and join us and please keep us posted on how things are proceeding. 

Hello Kirsty

I am so glad you are here, there are quite a few people on the forum with young families who have this disease.  You are so very young with the added responsibility of a young family, my heart goes out to you.  No wonder your emotions are all over the place, you are carrying a very heavy burden on your shoulders.

I don't have particular experience of your initial health condition and I am really sorry that it lead to you developing cancer and that you have the added complications before you get a final diagnosis.  Do you have a date for your stoma and biopsy ops?  The waiting around is awful, that is something most of us have experienced to a varying degree and once you have a clear treatment plan in place, things really do start to look a lot more positive.

We all have lots of tips we can pass on but I think key for you would be to arrange as much help as possible ahead of time so that you can concentrate on recovery.  The treatment is tough but doable, and one major side effect is fatigue whilst your body is repairing itself, and this is where you undoubtedly will need back-up for the normal things you do as a young mum.

We are always here to offer support along the way or even just to commiserate if you need to have a rant, we have all done it!

Irene xx

Hi MrsKS ,

Firstly welcome to the Macmillan online community although I’m really sorry to hear about your diagnosis. 

I’ve just commented on another thread about the wait for appointments & waiting for tests & test results is exactly the same, it’s agonising & anxiety inducing on another level!!

This is the beauty of this forum you can come here & chat freely knowing we all completely understand. I really don’t know where I would have been without this little community & the support people offered me throughout my diagnosis, treatment & recovery.

Crohn’s disease is awful in itself without this diagnosis on top. I know that the thought of a stoma isn’t great but you’ll probably find it offers you immense relief throughout your treatment & recovery especially with the added complication of your Crohn’s. 

You don’t need a reason at all to post here, we’re here to support you however we can even if that means just popping on for a bit of a chat about life in general. 

Nicola

Hi Kirsty,

I"m so sorry to hear about your diagnosis, and you're so young! I can see how Crohn's would complicate matters, and probably complicated your diagnosis in the first place.

A stoma will be a blessing. The waiting you're undergoing is not. I'm sure the Crohn's is the culprit, but I sure hope they get sorted soon and get you in there. The emotional roller coaster won't go away, but the pre-treatment prep at least keeps you busy.

Keep coming here for support! We know how you feel!

Hugs

Suz

Thank you for the welcome! Yes I have already felt less alone just from reading through posts. In terms of family support I am very lucky - my husband is my rock and best advocate and my mum is also really helpful. Plus in laws can help with the children which is useful. I am not keen on the stoma but I was told about 10 years ago I would likely need one at some point so it’s not a huge surprise really. Just will take some getting used to! Based on everything I have read here there is not way I could tolerate treatment without it as I already have quite severe anal stenosis from Crohn’s scar tissue and struggle with frequency and urgency. So think the stoma will help! I will try and keep updates in case anyone else comes along in a similar position. It seems that my case is more unusual than most anal cancers so it would be good if someone else can find my experiences helpful in the future. 

Hi Irene, thank you for the support. Yes if I am honest I seriously considered not bothering with treatment as I have had so many health issues over the years this just felt like the final straw. But there is no way I could leave my two little boys if there is any chance of treating this, and the drs seem to think there is so I will just crack on. 

I have had the biopsies already so I am just waiting for the results and will be seeing the oncologist next Thursday. I have an appt with the colorectal surgeon today so he may be able to give me a date but everything seems to be slow due to all the various teams needing to co-ordinate. 

I am already knackered most of the time so hopefully the fatigue won’t make things too much worse haha! Two young kids is hard enough! Xx

Hello Kirsty

When I first answered you I was going to mention a friend with Crohn's disease and thought better of it.  However, you later said that you were told about the possibility of a stoma before cancer reared its head.  Anyway, I will tell you about this friend now!  He had severe Crohn's disease and had a stoma in his early thirties too.  It utterly changed his life, so much for the better and many of the restrictions that were in place previously were no longer needed. He had been so ill so many times before his op and there was really no options left, but once he had it done he never looked back.

I am so relieved that you have a good support network, you will need it!

Please let us know how you get on, wishing you lots of luck in getting a date very soon.

Irene xx 

Hi again Kirsty, it sounds as though you have a great support system in the way of family which I’m really pleased to hear, it really does make such a difference. 

From what you’ve said many of the side effects of the actual treatment for anal cancer except for the skin reaction to the radiotherapy aren’t that dissimilar to the reactions that you have with the Crohn’s so they won’t come as a surprise to you I’m sure. Hopefully you’ll find that the stoma will offer you some relief. 

Thank you also for offering to keep us updated too but don’t worry if you’re not feeling up to it, you have so much going on right now. I’m so very grateful to everyone that participates in discussions on the forum especially people like yourself that have had a slightly different start to this journey as like you’ve said others will read your experience & hopefully find it helpful, so thank you again. 

Sending hugs 

Nicola 

Thank you, I think you’re right - as much as I don’t want it there is no way I can tolerate treatment without the stoma. Really appreciate your support! X

Hi Irene, I don’t mind hearing other experiences at all - I have found a lot of comfort in stoma related Instagram pages over the last few weeks actually, I am trying my own sort of exposure therapy to get myself used to the idea it won’t be totally awful! I am really glad to hear he found it so beneficial. I have been lucky that I haven’t had symptoms for a few years now but I hope the stoma will make that a long term thing (if they can get rid of the cancer of course…) xx