Newly Diagnosed with Crohns Disease, feeling fed up !

Hello Everyone,

It is 12 months to the day since I started my BC treatment and now I have been diagnosed with Crohns Disease. (Am now on 5 years Tamoxifen)

I am feeling fed up with myself, to say the least.

Has anyone any experience with this illness ?

Any help gratefully received. Best wishes, Jan xx

Hi Jan,
Sorry to hear re your crohns diagnosis. I have ulcerative coilitis, with features of crohns (think they cant make up their mind)…DX in 2005, but think i had it for years as misdiagnosed with IBS, im on Pentasa and a lot betterm dont need to know where ev ery toilet is now! I still cant go out of the house without imodium, but some food and definately stress set me off! I was dx with breast cancer in 2006,and my bowels were great on chemo, an unexpected side effect!
I think you just have to learn with the crap,sorry re pun that life throws at us…
Im currently avoiding another colonoscopy, but scared as in the USA, all women with BC are offered them. i would love to know if there is any relationship between bowel disorders and BC…

Hope you are keeping well, be patient while the meds are trial and error…

Jill

Ps was on tam, had ovaries out 18 months ago, now on aromasin, also had chemo, rads, herceptin

Hi Jan and Jill, I have had bowel problems for years too. It was interesting to read Jill that when you were on chemo things got better…that happened to me too. I am waiting for a blood test result from my Gp but cannot remember if it was for crohns disease or celliac disease…will probably remember later!..chemo brain still around! A few years ago the hospital carried out tests ( think it was sigmoidoscopy) but all it said was that I had diverticular disease and IBS. I too cannot go out without imodium and have to check out where all the loos are whereever I go. But what puzzles me that I can have days when all is ok.
I was first diagnosed with BC in 1989 when I was 39. Then when I was 49 in 1999 they told me it had spread to my bones. I was on chemo last year for 8 months. I was on aromasin before chemo but it has been changed to Femara (Letrozole) now.
I am keeping well otherwise. I have noticed certain foods make it worse or if I am stressed about something. I can go to the loo 7 or 8 times at its worst, and each time I think I have finished…sorry if this offends. I too would be interested to know if there is any connection to BC. I have retired now, but when I was at work it used to embarras me when I had to keep going to the loo. I will look out for any more posts you put on here and will let you know when my own results come back.
I hope we get to the bottom of it…sorry again, Love to you both, Val Oh Jan I live in Edinburgh. I see you live in Scotland too.

Hi Jan,

I don’t have Crohn’s but my daughter does. She had her first episode when she was sixteen but then it seemed to settle down. The next episode, ten years later, was much more severe and she had extensive surgery to remove a section of her bowel followed by a course of drugs including steroids. She has taken meds ever since (minus steroids most of the time) and she has it under control. (She will be 40 later this year. Argh! This makes me a child bride of course lol.) She avoids fruit and fruit juices and hot and spicy food but otherwise eats normally. Her main trigger is stress. Have you contacted the Crohn’s Society? (I think that is what it is called! Google should help.) My daughter had a card from them she could show to shopkeepers to ask if she could use their lavatory when there were no public facilities available. She has annual checks including an endoscopy because prolonged Crohn’s can potentially develop into bowel cancer.

Good luck,
AlexG

Hi Jan,

I have put for you below the link to where Crohns disease has been discussed previously on the forums which you may find useful to read.

breastcancercare.org.uk/forum/viewtopic.php?f=99&t=21446&p=308915&hilit=crohns#p308915

Hope this is useful. Take care,
Jo, Facilitator

Hi Jan et al,

The bcc facilitator has emailed me to ask if I would respond to you, as I have had Crohn Colits for 40 yrs, being diagnosed in 1970 when I was 25 yrs (yes, there is such a thing - it is when both the small intestine and colon are affected by Crohn’s - which is very different to Ulcerative Colitis, although both diseases are classed Inflammatory Bowel Disease. Crohn’s inflammation involves the three layers of the intestinal mucosa; UC just the inner layer, and never the small intestine. Some medications overlap for both diseases as do surgeries, but there are distinct anatomical differences.

I was dx with invasive ductal breast cancer, which had already spread to my lymph nodes, in Jan 2003. I had a wide local excision, sample node removal, then a month later (due to a seroma in the original scar), total axillary removal. I had FEC and radiotherapy,some 4 yrs of various aromatose inhibitors, but they made my bone density/pain much worse,(due to some 30 yrs of steroids) so I stopped on the advice of my Oncologist and Gastroenterologist. I have just had a 3 yrly mammo and all is clear.

You ask if there is any connection between bc and Crohn’s - I have discussed this endlessly with various gastros and my breast surgeon, and there is some anecdotal evidence that the Ashkenazi Jewish population of Eastern Europe (many of whom emigrated to the Western World during the pograms of the late 19th century)are genetically pre-disposed to both diseases - I guess I just got unlucky and got both! My elder sister believes our maternal grandfather was an Eastern European Jew who emigrated to England in the early 1900’s. I believe research is being done in the USA on this question.

Loos!!! I was one of the original members of the National Association of Colitis and Crohn’s (website: nacc.org.uk) who are actively funding research in England and are tremendously helpful to what we Crohnies feel is a socially unacceptable, isolating and embarrassing disease - as cancer (in all its’ forms) used to be. NACC members are issued with a Can’t Wait card each year when renewing their membership (I think it is now £12 pa.)which allows us to use non-public loos, such as some national high street stores, pubs etc. I have even been able to get upgraded to Club Class when flying to the US on a number of occasions, if an aisle seat is not available near a loo, which helps enormously on a long haul flight.

I could write a book on Crohn’s, as it is such a complex disease, and not every patient “presents” the same. However, diagnosis is much easier now, with the advent of colonoscopy and endoscopy procedures - when I was dx I had to have a laparotomy, which would be very unusual today. Medications too, have come a long way since the dreaded prednisolone, and I have been fortunate these past 9 years to have a brilliant gastro who has experience of the new immuno-modulating/immuno-suppression drugs; I am now on 8 weekly Remicade infusions (a bit like chemotherapy, done through a vein as a day patient in hospital)which is, after a very difficult year in 2009 with 4 hospital in-patient stays, keeping the disease in remission. I had my first resection last March, with the last part of my small intestine, the terminal ileum and first part of my colon removed due to strictures, abscesses and ulcers, which is quite good going after 40 yrs. The more resections of intestines one has, the worse the diarrhea becomes, so I have somehow been able to cope with drugs until last year.

My particular Crohn’s is “remitting/remission” type, much like multiple sclerosis, but some Crohn’s patients only get a few flares and the disease seems to burn itself out. The gastros/researchers don’t know why. Various genes have now been identified as
being a pre-disposition to Crohn’s, but this does not make a cure realistic in the near future. I have found one has to be resigned to just live with it and find the best gastro one can. A supportive husband/partner also makes a huge difference to coping with flares, hospital treatments, admissions etc.

As I have said many times, I found dealing with breast cancer “duck soup” compared to living with Crohn’s, but I count my blessings each day and am grateful for our NHS, unlike millions of Americans who have no, or inadequate medical insurance whatsoever - and I have had to counsel some of these very unfortunate people through Medhelp.

I will be more than happy to answer anyone’s questions, either publicly on the bcc forum, or by private e-mail. I have been Medhelp’s Community Leader for Crohn’s & Colitis on their website for some 3 yrs, and find it very fulfilling to be able to help people from as far afield as Australia, Singapore, Thailand etc.

Take care all,
Liz.