Crohn's disease, chemo and juicers

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Please can someone help. I am due to start chemo soon. I have had Crohn’s diseases for 24 years, very ill at some points but not had surgery. I have been on azathiroprine (imuran) since 2001. Generally ok depending on what I eat. Not so goid just before a period when I spend too much time in the toilet.

do chem drugs make Crohn’s disease worse in you experience? I control symptoms diet: very few takeaway, ready made meals, or fruit. However I have read that a diet rich in fruit and veg is good. I can do the veg bit, but fruit is a problem because of their skins.
i have brought a juicer does any one else use one especially if they have Crohn’s, but would love to hear everyone’s experience

xxxxxxxx

wAyxj

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Hi Rose123,

Welcome to the BCC discussion forums where I am sure you will get lots of good honest support from the many informed users of this site and hope there is someone who has a similar experience to yourself who can help. Could I also suggest that you give the helpline here a ring and have a chat with the staff here, they’re here to support you through this. Calls to the helpline are free, 0808 800 6000 lines open Mon-Fri 9-5 and Sat 10-2.

Take care,

Jo, Facilitator

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Hi Rose, I’ve had Crohns for the last 15 years and have been on azathioprine for the last 10 years. I’ve had two lots of surgery to remove parts of my bowel following severe ill helath for about 2-3 months each time. I know how exactly how you are feeling with chemo coming up. I was terrified that the chemo would make the Crohns worse as I was told I would have to come off the azathioprine and that has been working for the last 10 years, as I’ve only had very mild symptoms during this time. I had my first chemo 3 weeks ago. I’m due the 2nd cycle on Thursday. I got a lift to the chemo as I wasnt sure how it would effect me. I’m having EC rather than the FEC as at my hospital they give 3 sessions of FEC with 3 sessions of Tax and my Onc said that the Tax can be tough on the bowel. She also said I would have 6 sessions of EC but if there were any problems she would aim for a minimum of 4.

Before the 1st cycle I read all the hints and tips I could find on here which resulted in me drinking extra water the day before, the day of and the day after the treatment. I also bought ginger biscuits, ice cream, ice lollies, pineapple juice etc. The day of the treatment my reaction when the drugs had been administered was - is that it? I didn’t have any of the side effects mentioned during administering it such as itching, metallic taste, etc. I then rang for my lift and waited half an hour for it to come. Again, no problem. I did have red urine immediately after which is the Epirubicin going through my system.

I spent the rest of the day waiting for something to happen. Nothing did. I took the steroids and anti sickness pills as instructed and also took my Lanzaprasole for heartburn, which I’ve been on for ten years too. I only ate small amounts of food and ate what I fancied, soup, toast, etc. I’ve had no major problems for the 3 weeks. I did get thrush, top and bottom but after checking with the hospital took a thrush tablet and that cleared. I’ve had a couple of small gripey pains in my stomach but thats not unusual and I’ve had the odd occasion when I’ve felt a bit queasy or had heart burn, but again thats not unusual for me. I’ve taken it easy over the last 3 weeks doing what I can when I can or want to. The day after my first treatment I went for a short walk, the following day I took my mam shopping, etc.

I too am careful about eating fruit and vegetables and have ate them as I normally do. I don’t have a lot but have had them and not had any major effects. I drink fruit juice, usually shop bought and have had smoothies in the past but thats as far as I’ve gone.

I know everyone is different and the side effects are different for everyone, and may increase over time, but I have been really pleased with the way I have got through the first cycle. Any side effects have been minimal and manageable. I think that the experience of having Crohns and its associated problems have made me stronger and probably increased my pain threshold! I can honestly say having Crohns, especially when its been active, has been more painful than anything I’ve experienced following a dx of breast cancer, followed by mastectomy and now chemo.

I hope my experience has helped you in some small way. If there is anything else you want to know just ask. I’ll let you know how I get on Thursday too if you want.
Take care and keep strong

Shazza xx

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Hi Rose123,
Sorry that you’ve had to join the forum, but it is a great plac e to be. I started chemo in May of this year. I’m pleased to say its all finished nOw. Although not easy it was doable and feels like an age ago already!
i too have Crohn’s. it was under control when I hard my cancer dx. Ironic that I was actuall ‘well’. Typical! I cannot comment on the juicer as I haven’t got one. The chemo certainly did not make me flare up. In fact I had no crohns symptoms at all… I think that as Crohn’s is an autoimmune disease it would only be helped by chemo as many of the Crohns drugs are immunosuppressants. Some are even used for both eg Methotrexate.
good luck with your chemo xx

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Hi Rose123
Sorry I can’t help with the chemo side of things but I also have Crohn’s disease. I was dx 9yrs ago after a very bad year when I had every Crohns complication going - or so it felt, apart from the usual symptoms I had erythema nodosum, uveitis, arthritis in my right knee and left ankle that then went septic requiring a week in hospital with total bed rest so as to not put any pressure on the joints. Tomorrow I’m having a nipple reconstruction and after several years of no flare ups I have been having pain and trips to the toilet over the last 10 days although it can be a few hours between these. The op is being done under a local so I am very nervous that I might have a problem in the middle of it but really don’t want to cancel. Yikes.
Good luck with the chemo.
Take care
Lemoncake
x

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Hi all,

thank you for your replies, I know we are all different but it is reassuring to hear your stories.
Shazza, I have not had surgery for crohns, but had 2 10 days stretches in hospital being pumped full of steroids. Then I was on and off steroids for many years and detest the things. It was only when I started Azathioprine 10 years ago did I manage to stop steroids and begin to start having a life again.
I remember being so weak, thin with so much pain, going on for months and months and the thought of going through that again because the Azathopirine has stopped is just unbearable along side chemo- side effects may just finish me off!!!
The ironic thing is the mother and toddler group thought I had cancer because I looked so bad. Now I look well and I have cancer!!!
I am praying that I do not have to put up with all of that- and as Doggirl says it might respond well.

Good luck Lemoncake with your nipple recon and that your Chrons behaves itself.
xxxxx

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Hi Rose, the steroids was one of the things I was worried about. Before the Azathioprine I had several spells on steroids. At one time I had a stomach bleed with them and was admitted to hospital. They also made my face bloat up so I looked like a cross between a cabbage patch doll and a Klingon! I mentioned this to my Onc who assured me the steroids I would get during chemo are short term only so shouldn’t have any problems. I didn’t. I got the first dose of steroids through IV just before the chemo, then was on them for first 3 days only. It sounds like you had similar problems to me. Prior to dx for Crohns they thought I did have cancer as I had a lump in my bowel. It was only after the op they found out it was benign and probably just ‘matter’ [polite term for a blockage I think]. I suffered pain and weightloss so much more during those problems than I have withbreast cancer. It sounds daft but my biggest concern about the chemo was the potential effect on my Crohns too. As I said before though, so far so good.

I think Doggirl may have a point about the effects on Crohns. I’m just taking each day as it comes and trying to make the best of the good ones. I’ve even put my xmas decorations up this weekend and been out for a xmas dinner today. This week is definitely the ‘good’ week. If you want to private message me about anything please do. I know its not always easy to talk about Crohns and its side effects.

When are you getting your first chemo?

Keep strong!

Shazza xx

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Hi Shazza, thank you so much for your information, it really helps as statistically there would be very few of us going through chemo with Crohn’s. I always let drs know I’ve got Crohn’s before they treat me with anything eg voltoral for post mastectomy pain- which is a real no no for me!
I just worry that non gastro teams just dismiss Crohn’s and put you on drugs then when you react say o yes it can make Crohn’s worse- I just have difficulties in trusting them some times duevtonpersonal experience of their ignorance and not listening to me and accepting I know how my body feels.
xxx

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Oh dear Rose, think we could be twins. I’ve had similar problems with docs, not getting information and not being listened too. I dont know if its something to do with Crohns specifically or having an ongoing illness but you do get to know your own body and what is right for you. I actually wrote to my gastro-consultant and explained about the chemo before the Onc got in touch with her [the trust thing I think lol]. She answered my questions and confirmed I would need to come off Azathioprine as it would impact on the immune levels alongside the chemo. She did point out that cancer treatment would have to take precedent. I asked if she had any other patients or case studies of people having Crohns and chemo but she wasn’t aware of any.

Shazza xx

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Hi Shazza,
i will try contacting gastro team tomorrow and let them know myself about my situation. The surgeon has been very helpful in answering questions but I am really concerned he may make a referral with no mention of the Azathapirine possibly needing to stop and thereby delaying chemo. I just so wish my medical colleagues would view us holistically rather than as systems sigh…
Rose 123
xxxx

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Hi Rose, just thought I’d let you know I got back from 2nd session today and so far so good. No nausea and only side effect so far is red urine. Hope you managed to get your letter written to consultant and you get a quick response to put your mind at rest.

Shazza xx

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Hi Shazza,
thats good and encouraging news.
xx