Crohns and Cancer

Hi Jasmin

Welcome to the online community and I'm sorry you've had to reach out this morning with your problem.

I'm not from this group but as I spotted your post I thought I'd pop in to see if I could help and let you know your post had been read.

I'm afraid I think you need to make an urgent appointment with your GP regarding your flare up to try and establish exactly what set it off, could it be the stress and worry about the start of your treatment for tongue cancer on Monday.

I'm not sure if you are talking about coming off medication for your Crohns or the medication for the tongue cancer either way it's not good to come off them especially the Crohns ones as this will not help control your flare up.

I would also suggest that contact the clinic  you have to attend on Monday and put them in the picture, just in case they have to delay the treatment

My last suggestion for you is to suggest that you contact a Macmillan specialist nurse on 0808 808 0000 from 8 am this morning and they maybe able to give you some advice.

I see from your PROFILE that you would like some people to chat to and would like to suggest that you join our Bowel (colon and rectal) cancer forum Group as being the nearest group for anyone with Crohns and have a chat with the friendly members, we also have Cancer chat forum group where you can also come in and have a chat.

Please do make some phone calls first thing this morning and get some help as both the Crohns and tongue cancer could be very much associated.

Ian

Hi Ian

Thank you so much for responding to my 'reaching out'  on  diagnosis of my tongue cancer the treatment for my Crohns was stopped immediately. ... as it's an Immunosuppressant .... that was over 8wks ago... sadly, nothing was put into place 'if' a flare up was to happen..my Crohns has always been active, it's not something that's just come on ....the medication was just keeping it at bay! I have been prescribed some mild steroids whilst I'm on my radiotherapy treatment. .. but, these don't appear to be working that well...and I'm frightened I will have a full blown flare whilst on my treatment plan. ... 

I will give Macmillan a call this morning. ..thank you, as I don't seem to be getting much help from my Crohns specialist etc.... feeling very alone in this battle at the moment. ..

Jasmin

Hi Jasmin

Am in a similar situation to you.  I had cancer on the epiglottis and all Crohns meds stopped for the same reason.  Saw IBD nurse who has referred my case to IBD MDT team because there is no immunosupressants allowed.  Options seem to be liquid only diet especially during a flare.  Surgery.  Or just steroids and take the risks as better chance of coping with steroid side effects than the suppressants causing more cancer.  What were you on?

If I was you go get a load of complan and only take this for a week it should settle the flare but it is the worry that is kicking it off.  Good luck to you.  I have had two lots of laser surgery and was clear 7 weeks ago but yet to have first check which is next Tuesday.

Feel free to add as friend and private message if you want, there is another lady on here with bladder cancer that has the same issues we met on line at the Health unlocked site and were both on Vedolizumab.

Best of luck

Mo

Hi Mo

It's good to hear from you.... I was on Inflimab (immunosuppressant) for 8yrs, was the only meds that worked for me after my two lots of surgery.... historically, once I start to flare nothing seems to work ..and have always ended up under the knife.  They stopped my meds almost 10 wks ago now, so 18wks with no meds ... they have just put me on some mild steroids (entocort) to see me over the next 6wks of Radiotherapy. .. keeping fingers crossed it works.... I have asked them to have a look for liquid form steroids... but prednisolone is the only one....... as I won't be able to take tablets for too long once Radiotherapy starts....

You mentioned IBD MDT....what's that Mo?....  fingers crossed for your appointment next week..... as for the complan.. I grabbed a load last night  ... but thank you 

I'd love to add you if that's ok..... 

Thanks 

Jasmin

Hi Jasmin 

Have accepted your friend request, message any time.  Its so hard having both because treatment for one exacerbates the other.  MDT is Multi Discipline Team same as we get for the cancer.  Basically all the doctors can put their heads together to discuss what can be done.  I had an Iron infusion yesterday which I have needed since April but could not have due to being on other drugs.  Got an IBD appointment early next month when they will hopefully have made some decisions on treatment.  Cameras up the nostril on Tuesday to hopefully see it remains clear.  

Keep in touch 

Mo xx

Hi Mo

Thanks for accepting.....it's really hard....what makes it difficult for me is my IBD team are at my local hospital, but my treatment for the cancer is somewhere completely different. ..and at the moment neither are talking to each other.  

So glad you got your iron infusion.... and all the very best for Tuesday.... let me know how you get on

All the best

Jasmin xx