New here.

[Hannah.]

Hi,

So I'm new to this, my name is Hannah and I live in Manchester (uk).

I have been suffering with Crohn's for 10 years now (was diagnosed at 13) but have never really spoken, or known anyone with it and have found myself needing to talk to other people going through it.

I'm having a particularly tough time at the moment as I'm not allowed any medication or treatment for it because I was diagnosed with melanoma (skin cancer) about a year ago. Thank you Humira. Since then it's just been a nightmare with daily flaring, especially overnight. Can't decide which illness is more stressful tbh.

Anyway just thought I'd say hi, and I think it's great there's a place like this so we don't all feel so alone .

Much love to all the Crohnies out there x

 

[Astra]

Hiya Hannah
and welcome, not so far from me!

Sorry you're having such a bad time, hopefully being here with us will help.
Did you get treatment for your cancer? I'm certain Prednisolone can be used during treatment and after, correct me if I'm wrong?
I know someone on Pred with chemo.
Anyway, enjoy the forum!
Lotsa luv
Joan xxx

 

[DanHerefordshire]

you say your not aloud any medication have you looked into or heard about elemental 028 or kalshake or anything along these lines... one a day can be great medication as you will get all your vitamins and nutriants

 

[Sascot]

It would definately be worth looking into EN (liquid diet). It would give your bowel a rest and as far as I know Modulen (we had that in Glasgow) has an anti-inflammatory as well to help the healing. If you don't like the taste of it you could always get the NG tube. I have seen one of the mum's at my daughters school with one so I know it's not only kids that get the tube.
Good luck!

 

[Hannah.]

Hi Joan, Dan and Sascot!

Sorry I should have been more specific really. I have had liquid diets before. EN for 6 months, Modulen, Fresubin for a year, etc. and they don't work with me really. They reduce my flares but only if that is all I consume, and even then the difference sadly isn't worth the sacrifice. I like food too much lol.

I've got quite aggressive Crohn's had surgery to remove my strictures but that didn't really do much for me either. I think next step surgery wise in my doctors eyes will be a stoma bag. Is the NG tube the nose thing? Cos I have had that too *shudder*.

And no Joan, you're absolutely right. I've had Pred up until recently but they've weened me off it as I'd been taking it too long in their opinion. And now the doctors are having talks about methotrexate. Anyone on this?

Thanks for replying. Feel welcome already x

 

[DanHerefordshire]

its a shame the liquid diets were not sucsesfull for you... i take it you have crohns in your colon? do you have it in any other locations in your Gi Tract

 

[Irene3]

Hello Hannah, welcome to the forum. Can you take 6mp? This is a cancer medication which also works with crohns. Also if Pred is a big prob, maybe entocort for a while with 6mp, while your recieving other cancer treatment? I'm just guessing, but ask your GI.
This is a great forum for advice and support, and there are so many with a lot of crohns/medication experience, so I hope you find all the info and support you need! I hope your health improves, and please keep us posted on your treatment. Best wishes xo

 

[Hannah.]

Yeah Dan I know, it's such an annoyance. Though I'm not complaining on that front cos I do love my cheese. Don't think I be best pleased if I had to give it up. I'm about to try a new diet over the summer that basically completely cuts out sugar, starch etc to see if there's anything to be said for this "bacteria causes crohn's theory". There's a book on it somewhere so I'll find a link if I can in case anyone else is interested. And yes I have disease in my colon on my left hand side (my left) the whole way down, at the join between large and small intestines, and at the very top of my small intestine near my stomach. I don't know the medical terms for all those places. Where is yours if you don't mind me asking?

Hi Irene, I've never heard of 6mp so I'll ask my doctor about that, thanks. I see you're about to start taking Humira? How're you feeling about that?

Will do, thanks everyone x

 

[DanHerefordshire]

yes i belive food is the key to crontrolling the illness although the more severe it gets the more foods are limited so its a catch 21?

as you have crohns in all three locations i imagine your not flairing in all three if you are must be very painfull...

i have mine in my colon and my dudoneum... dudoneum is where small intestine and area.. its ment to be very rare here and hard to treat although i keep seing people on here with it.. if you have it there like you say your in the same boat

i manage mine with baloon dilations and elemental diets so far so good i rarely get trouble

irene is right about 6 mp worth asking

may be woth asking about baloon dilations to if you have narowing in your colon dudoneum
inflamtion though you should be able to possibly blast with drugs and control with food... plus vitamins B12 and iron have you had these checked?

 

[Hannah.]

Yeah, it's really difficult to manage through diet as I guess you could end up eating nothing. So are you on permanent elemental diet?

No I think colon disease is causing me the most issues right now, the joint (dudoneum as I now know) hurts me quite badly, but only about once a month and the bit near my stomach bloats out occasionally but isn't too bad.

I'll ask about ballon dilations too, as well as the 6mp. I've had iron supplements before but I'm not anaemic so they stopped me on them, and I take cod liver oil which I think has vitamins including b12 in it, but I'll check that too.

Thanks x

 

[David]

Hi Hannah and welcome to the forum I'm sorry to hear about your melanoma

The first thing that comes to my mind there is have you had your vitamin D levels tested? People with Crohn's Disease are very often deficient in vitamin D and numerous studies have shown that vitamin D helps prevent and fight melanoma. Yes, your cod liver oil would have a little vitamin D, but if you're deficient like many here, you would need very high levels of supplementation. Proper vitamin D supplementation can also help with some symptoms of Crohn's Disease as well. If you don't know your levels, I'd strongly suggest you get them checked.

 

[Hannah.]

Ooooh ok, thank for that! Any idea how I can get them tested? GP referral?

 

[David]

Yes, your GP should be able to do that for you.