Discouraged - need advice

[Smiller]

I've been on the SCD diet (no dairy) for the past 8yrs due to an IBS/ileitis diagnosis which I realize may have been LC all along.

In Sept. I started to flare and thought I could manage it as I had in the past. A couple weeks ago I was diagnosed with LC and prescribed Budesonide. I have an MRI scheduled next week to check ulcers in the ileum. I've been eating chicken, broth, hamburger and peppermint tea for a couple months. Every time I try to add something new (Ex. banana a little bit at a time..which has worked in the past) I get thrown into a massive flare...even with the Budesonide. I've been in this pattern of taking one step forward and two back for months and it's been very discouraging. The worst part is I'll have a "good" bowel movement and then nothing for 3 days. During the 3 days I slowly add in a new food (ex. Banana) and then on day 4 I'll have watery diarreah again!

I placed an order for Enterolabs for A1 + C1.

I've been trying to keep positive about it but yesterday was especially a downer for me...my teenage daughter was worried about me which has never happened! I've lost 15lbs since Sept.. :(

I have some questions!
1. I'm on day 11 for Budesonide. At what point is it determined that it isn't working?
2. Any suggestions on new foods to add and when it's safe to add them? My gut was on fire yesterday after eating banana and I had super gurgling this morning which isn't a good sign.
3. I really need to start taking Vitamin D and Calcium but I'm afraid my gut won't like it and throw me into another flare. Should I hold off until my gut is healed?
4. I'd really like to add in acidophilus as that has helped me in the past during flares but I know that taking it too soon could cause worse problems. Any suggestions?

Thanks!
Steph

[Gabes-Apg]

Hi there Steph
welcome to the group and sympathies that you had to find us and that you are having instant reactions to banana's


1. I'm on day 11 for Budesonide. At what point is it determined that it isn't working?
I am not sure on an exact time - if you are still having contact with major triggers this will limit its effectiveness


2. Any suggestions on new foods to add and when it's safe to add them? My gut was on fire yesterday after eating banana and I had super gurgling this morning which isn't a good sign.
given that you are having major reactions - I would revise current basics and get some good stabilisation before embracing new foods
in the guidelines to recovery section - there is a stage 1 eating plan and then a stage 2 eating plan with suggestions for ingredients

3. I really need to start taking Vitamin D and Calcium but I'm afraid my gut won't like it and throw me into another flare. Should I hold off until my gut is healed?
skip the calcium. if you read the articles in this section of the Guidelines to Recovery - you will see that Vit D and magnesium are the key nutrients
(having good levels of Vit D and magnesium will look after the bones amongst other key things)
the other observation we have seen over time is that medication treatment does have limited scope of success if the person is low in VitD and magnesium. We encourage taking MC safe Vit D3 and magnesium sooner rather than later.


4. I'd really like to add in acidophilus as that has helped me in the past during flares but I know that taking it too soon could cause worse problems. Any suggestions?
skip this for now, while there is so much inflammation in the gut, taking pre biotic / pro biotic are almost useless.
the best way to get a healthy gut is to minimise inflammation and allow gut to heal. in most cases the bacteria will balance in its own time.
while gut is inflammation and villi damaged that process won't happen.

Healing the gut is like renovating a house - you have to do it stage by stage, you can't rush a stage and you can't skip stages otherwise it will not last in time.

looking at your current basics some observations/comments

the peppermint tea - is it a commercial tea bag variety or are you steeping leaves. A lot of tea bag varieties of tea can have other ingredients toxins
(such as soy etc)
you may be reacting to chicken (mass produced chicken can be feed a high grain diet. gluten/soy). consider trying another meat source preferably grass fed.

the reaction to the banana maybe histamine related - do you have any other histamine symptoms (running nose, itchy throat etc)
this is indicator of excess inflammation and lack of key nutrients to moderate histamine levels ( B6 and magnesium)

other key things that can be causing ongoing inflammation: -
is the house totally gluten free? - ie is your cookware and utensils new and never had contact with gluten based products

have you reviewed bathroom products for major triggers? natural products can have wheatgerm and other triggers
if you react to Soy - then any product with Vit E will have soy.

are you drinking anything else? water? juice? etc

depending on your age - If you are having hormonal issues - these can impact MC

the other major trigger for many here is stress. whether that be physical stress, mental stress, emotional stress, do you have any ongoing situations?

how is your sleep quality?? even for me 12 years on with reasonable remission, I need good quality sleep every night. minimum of 8 hours. ideally 9 hours to have the energy to work full time and maintain the house etc (I am 52 and live alone)

take some time to read the posts aimed at newbies, and the subsequent comments/questions by others. reading these will help you understand the wide variety of triggers.
the other area to read is the success stories area, here you will see what worked for others and this will help you come up with the MC management plan that will work for you

hope this helps

[Smiller]

Thank you for responding!

I had been steeping my tea but ran out recently and bought tea bags.. I'll definitely get that changed!

I've read on other posts about topical magnesium. Is there a recommended brand/dose?

No histamine reactions that I've noticed.

Nope..not a gluten free household as I have teenagers. Will look into the gluten free cooking items.

I've only been drinking water and peppermint tea. I was drinking water with a dash of grape juice but removed it as I thought it might be a trigger.

I'm 52 and don't have many hormone issues but then maybe I do?? I did have some recent bloodwork and should find out if anything stands out.

I believe this flare was triggered by a high level of stress these past few months while dealing with water damage renovation. It's over and I've been
trying to find ways to destress. I'm also considering acupuncture to help chill.

Thanks again!

[Gabes-Apg]

Topical magnesium - as I am based in Australia, we have different brands.
Ancient minerals is one I have seen mentioned in various discussions. it may sting at first, if so you can make it a bit milder with demineralised water.
for now go for items as pure as possible (ie no creams or extra ingredients)

I would definitely encourage having seperate items for your cooking. have your own chopping board, utensils etc.
if you are super sensitive to gluten, I would consider hand washing your kitchen items (do not put them in the dishwasher with their items if they have gluten on them) using cleaning items (cloth/scourer) that dont touch anything else etc

In the early stages of my healing I was sensitive to gluten and soy. I could not have food that had been cooked on a bbq/grill plate that had had vegetable oil. If I handled gluten items, I would wash my hands very thoroughly before I prepared my food items etc.
with time and good healing, I dont have to be this particular.

depending on if you have been through menopause or not - there are many ladies that their MC diagnosis was at the same time as they were going through menopause. one key thing I have learnt is the hormone changes deplete magnesium.

I would encourage the mental/emotional aspects of Life with MC. Meditation, acupuncture, yoga, magnesium foot soaks, relaxing activities. It is just as important as the food aspects to help reduce inflammation and help the gut heal.