Alternatives to Immunosuppresents

[HJ10HMO]

Hello All can anyone help me with advise on how to control my Crohns without using any form of immunosuppresents. I have had a bad year with very bad side effects from Vedolizumab, eventually led to having Throat Cancer not sure if related or not. However cancer has been surgically removed and now the Crohns is starting to flare because I have been on 8 weeks of antibiotics so far and 4 to go. Have read a couple of posts about EEN's which are interesting or otherwise I think I am left with steroids or surgery as my options. Have an appointment next week to discuss but just wanted to talk to anyone with any experience in the above fields. As I tend to find IBD team just use you as a guinea pig for the next mab drug to see if it works, I am not happy to go down this route with the threat of cancer hanging over me so want to have a few facts at my disposal before the meeting. Thanks in advance.

Mo

[willow24 Administrator]

Hi, have you ever tried the mesalazine meds, asacol, pentasa etc or even sulphasalazine?

[HJ10HMO in reply to willow24]

I had Pentasa originally but it didn't do anything. Don't know much about the others. Was just starting Ustekinumab injections which were working but I cannot take any immune drugs for next couple of years. Feeling realy down about it all as I am both Vit D and Iron deficient at the moment and I have quite bad active disease. I just need something to calm it all down and give my poor old body a chance to recover.

[willow24 Administrator in reply to HJ10HMO]

Ask if you can try asacol, it may be worth trying a low residual diet for a couple of weeks just to rest the bowels. Also metronidazole can be used to help active disease. You certainly been through a lot and it so unfair you get a flare up now x

[HJ10HMO in reply to willow24]

Thank you Willow at least that gives me a couple more options to discuss. Understand this one is not going to give any easy answers and we will have to try. Have sorted out roughly what foods will trigger me in the past and narrowed it down to wheats/ ie bread and pastry, pulses like baked beans and vegetables. I persevere with veg as we all need some but I have to be very careful what and how I eat because the cancer was in the Epiglottis so have to swallow slightly different to other people because of aspiration.

[Cylarreta in reply to HJ10HMO]

Hi. Sorry you’re going through this. I’ve been there. Mesalamine helped me the most along with prednisone. I tolerated Asacol as well. Resting your gut with a low residue diet (no sugar, wheat, dairy) also helped. I ate a lot of cream of rice and bananas. I drank aloe Vera juice. No fibrous vegetables or anything that took work to digest. Make sure to hydrate-coconut water or just plain water-Gatorade might help. Hope you feel better soon.

[HJ10HMO in reply to Cylarreta]

Thank you for the advise, will add all this to my list and try to keep diet on low residue.

Mo xx

[willow24 Administrator in reply to HJ10HMO]

Low residue is basically white bread rice pasta, boiled chicken, white fish, boiled poys etc. Unfortunately some of this foods are in the risk catagory for aspiration. This diet ok for max 2 weeks but would not recommend doing for longer as not nutritionally balanced. There is modulen which you have as a drink, which im sure can have a thickner addded if needed. This has all your nutritional needs broken down to the simplist components and is easy for absorption x

[HJ10HMO in reply to willow24]

Hi Willow I have been trying to stick to this type of diet for last week or so. Had IBD appointment today and they are referring me to MDT team to see what can be done for me. Have an iron infusion booked for Friday at long last so hoping this might pick me up a bit. They were really helpful and agreed with me immunosuppresants are not a good idea at the moment and understand I just need to get my body on an even keel for a while it needs a rest from all this fighting. Thank you all for advice.

Mo xx

[Eixor57]

Purchased the book “breaking the vicious cycle intestinal health through diet”. And also check out the stages of the diet at pecanbread.com

Start with the intro diet first for a few days to let your colon rest and then start stage 1 of the diet only and do everything 100% see if it makes a big difference for you if you start seeing a difference keep going don’t stop and go to the next stage and so on and so many people that can’t take medication have done well with this specific carbohydrate diet it’s a lot of work but eventually it becomes easier. Starting the homemade yogurt, or fresh fruit too soon is not a good idea.