My new Diet Journey

Hi I am quite new to the forum. I live in England as was diagnosed with Crohn's about 13 years ago. I also have a gall stone. I have stayed quite well flaring 1 or 2 times a year. If I flare I took Prednisone and more lately budesonide which worked well. It was suggested that, although I appeared to have mild to moderate Crohn's I should consider taking an immunosuppressant. I have been reluctant to do this because of worry of side effects and I haven't given up on getting into full remission through diet and life style but I haven't discounted meds in the future. Bad diet and stressy lifestyle had always triggered flares and improved diet calmed them so I have always wanted to give diet a really good go. I have never done it in systematic way.

I now have the chance to. After returning from Holland where I lived for 10 years I have signed up with a new GI doctor in a hospital which incorporates diet quite strongly. I had a scope knowing it wouldn't be good as I had off -roaded on the diet for 3 months since Christmas and was uncomfortable. Since cutting out gluten and dairy I no longer get D. but if I eat cakes and choc etc. , and I love to eat them :smile: I get sore and tired and my knee joints hurt. Bloods tests showed little inflammation but the scope showed severe inflammation in my traverse colon and early signs of stricturing.

So big wake up call my inflammation does not necessarily show up on blood tests, and if I stay inflamed I will need surgery in 5 - 10 years was the Docs advice. The preferred treatment is for me to start azathioprine but I am allowed a period of time to work with the dietician under medical supervision to try out my wish to treat my crohn's with a full on diet treatment.

I am very grateful for this. I am not recommending any one else not to take meds or stop meds I am just saying I want to try this before any other road. The GI doctor is supporting me and trying to fix up calprotectin tests that should clearly show if I have any level of inflamation as my blood work does not. It is a simple poo test that looks at the bacteria levels and can tell if there is healthy things going on in there or if the bad bugs are having a party.

So tomorrow I will have been on Elemental 028 extra drinks for 2 weeks. I drink 8 cartons a day grapefruit, orange and berry. It has been easier than I thought they taste like slightly weird milkshakes or frozen yoghurt if I put them in the freezer. Felt really odd not eating to start with, I felt sort of vulnerable and a bit lost, I really love food :yrolleyes:

The only problem I had was at the weekend I ended up in A&E with severe pain in my side they think it was gall pain as it went off suddenly but it really hurt! I had drunk two drinks quite fast before rushing off to work but they did not seem to think that was it.

Anyway 2 weeks down tomorrow 6 to go. I have taken to smelling food as it is as close as I can get to eating it and it does help! The idea is after two weeks I should be in remission and I do feel much less tired and hardly any tummy pain and better knees. Then the next 6 weeks should help my mucosal lining heal. I hope to move on to a mixture of elemental drinks and a SCD/paelo/fodmap diet combo. I have been doing lots of research and looking at new clinical trials and feel quite encouraged. I am also looking out my full on approach to life and stressy ways and trying to be kinder and gentler to myself and my guts and my whole body and soul!

I'll try and keep this updated. It is good for me to write it down. Good luck to everyone out there on whatever route you are taking to get better lots of hugs and love to you all as it's not easy but I am finding it manageable especially now I have a plan and good doc support. X:smile::ghug:

Good luck! Your story sounds similar to my own. I was on Pentasa for many years, having 1-2 flare ups each year which were treated with pred. After a big flare up, I spent 4 weeks on Elemental 028 last year and then began the LOFFLEX diet. The elemental diet never really got me into remission and so I've been struggling for the past 12 months with an elimination diet and reactions to nearly every food I've tested. If you have the determination to stick to your diet I think it has the potential to help, but if it's not working then don't be afraid to give immunosuppressants a go - they do seem like a scary option but it's better than letting things go uncontrolled and then requiring surgery. I hope the diet works for you and I'll be interested to read your updates, good luck!

Hi Dee Dorset,

I enjoyed reading your post because of the wonderful attitude you have It makes such a difference to our health if we have a good attitude. Thank you for sharing your story.

I'm relatively new to Crohns and am in the process of working with my GI in deciding the way forward, I hope that my dr is as good the one you have, I believe it's very important to be included in decisions and not to be just prescribed to. It has been mentioned to me that a liquid diet may be necessary in the future (maybe not so distant future) and I'm not sure a like the idea much cos I like food I can chew So it's interesting to hear how it's going for you.

I wish you lots of luck with this pathway and hope it goes really well for you, and like a previous post said feel worried if you need the medication at some time in the future.....In the meantime keep sniffing the food, best wishes and welcome to the forum, look forward to reading how you get on.

Hi an update on my progress. I will have completed 4 weeks on Thursday on the elemental liquid diet and 4 weeks to go. It has got easy, I have got totally use to the drinks and even look forward to them. I have had no other problems I have lost 4 pounds of weight overall but I am still in a healthy weight range on the chart. I feel well, my joints and tummy pain are hugely improved. I get the odd twinge so it would be so good to get calprotectin test so I can accurately know what level of inflammation I am at. The more I read about the test the more I can not believe it is not standard in the UK but so far neither my GI or specialist has managed to organise it.

The best improvement is I don't ache anymore. I am so grateful but it also makes me sad that I have been living with the tiredness and achiness so long I had forgotten what it feels like to feel good. Even if the diet that I will follow after the drinks does not achieve what I hope it will be worth it to know what wellness feels like.

I miss food now and again I organised a group of young people this weekend on a church camp and we were running around like crazy and the food looked so good. I had to walk away at one point as I felt a bit overwhelmed. I sat somewhere really beautiful and had it a bit of a cry. Not sure why but I think I "felt my feelings" a bit instead of eating chocolate as I would of before So pretty hard but good. Still need to work on the self care and slowing down bit of getting holistically well. Best wishes and hugs to every one on their Crohnie path to health which ever route they are taking. x

Hi Dee,
Your strength is inspirational. I know what you mean about smelling the food, I've been sniffing what I make for my husband and it helps a little. I'm on a full elimination diet right now while the doc puzzles to figure out what's going on with my belly! He's not convinced it's Crohn's because my diagnosis was 18 years ago but I've never had a bad flare since then. This is the first time I've really had any problems. Last night the neighbors were grilling out and I just stood in the doorway sniffing. It smelled so good. I'm worried about upcoming family get-togethers - I haven't discussed any of this with most of the family (other than my husband, kids and my mom) and I know they will think I'm being a hypochondriac or something when I bring my own bland food and don't eat any of the goodies there. <sigh>

Thanks for your reply. All the best with your elimination diet, I would be interested to know how you are doing it. I know what you mean about the hypochondriac tag, I use to get in first with the comments and say 'oh it's just my attention seeking diet' and they would laugh and I would get on with eating food that didn't give me blisters inside!:smile:

Hi Dee
I found it really interesting to see Paleo diet mentioned here. I am undiagnosed something (!) and have the last few years been trying to bring my diet inline with Paleo. I find if I am strict with it (like before a competition) I feel amazing

I don't think Paleo would work for me. With the elimination diet, I've cut out everything except for fish, seafood, white rice, skinless boneless chicken, skinless sweet potatoes, coconut oil, homemade yogurt, kefir milk, eggs, and some (very cooked, soft) veggies like peas and spinach. Oh, and oj seems to be ok if it's low pulp. yesterday I tried a Kind bar (nuts and dried cranberries) but that seems to have been a mistake.

Hi a quick update I am eight weeks into the liquid diet and seeing my dietician on Monday with the view to starting food soon. Found it Ok after 4-5 weeks felt great no aches no pain lots of energy I felt well for the first time, I can't remember ever feeling well like that. then after 2 weeks got a bug I think every one around me was sick and I got some pain in my belly and sore joints but nothing major and I am feeling better so I may hang on the drinks for an extra week to see if can get fully back to where I was.

My doctors did manage to organise the calprotectin test at the start of the drinks and I scored 240 I think or there abouts so that means active crohn's but then we knew that from the colonoscopy. So I would like to take another test at the end of the drinks to see if I am in or near remission but the results took 4 weeks to come in so might have to start eating with out knowing my GP is not keen to prescribe more drinks he is pretty unsupportive of the whole plan. I am taking to the dietician a plan of a diet that is SCD minus fod maps veggies and fruits and honey to see what she thinks. I will slowly reintroduce food in a elimination diet order and have some of the elemental drinks to keep up my food intake.

My GI specialist is still saying he wants me to have a colonoscopy and to take meds if not in remission in mid August. But he thinks what I am doing is reasonable.

If I sound a bit flat it is because it was hard to go back wards after feeling so well, but still feeling pretty good. If any one is facing taking elemental 028 extra drinks I think they are fine in fact I sort of really like them now! best wishes and strength to every one.:ghug:
Dee x

Hi have continued my journey in another thread
Newbie- Trying elemental/SCD route