A Major Setback

This has been a difficult post to write.  Recently I have had a flare up of my IBD symptoms.  After experiencing only about 5 months in remission, this has been a devastating blow.  But as always, this is a learning experience, and I hope that I will learn from my mistakes, and experiences.

Let’s talk about;

• What happened

• What caused the flare

• What I am doing to get back on track

• My mental health

What Happened

It all started November 15th.  I was feeling really good.  I was in clinical remission with my calprotectin at 44, and one or two solid BMs per day.  I decided that since my IBD was doing so well, I would shift my attention slightly to my very low iron levels.

I decided to try an iron infusion, of 1000mg.  I researched about iron infusions and IBD online.  And I used the search feature to read all of the posts and comments in the Facebook support groups I am a part of.

I could not find any stories of anyone having an iron infusion that caused them to flare.  Many people said that they had diarrhea for 2-4 weeks, then it went away.

After the iron infusion, I did experience diarrhea.  Which brought on the usual health anxiety that I have.  But I forced myself to remain calm until a full four weeks had passed.  I continued to eat phase 1 / 2 of IBD AID, slowly introducing 1 new food every week or so.  Along with my usual supplement and stress management routine.

Around four weeks after the infusion I began to have pain and nausea with the last few BMs of the day.  And discovered some mucus in my stools.  Then I really began to freak out.  I knew that it was no longer just symptoms of the iron infusion.

What Caused the Flare?

Honestly, I cannot say for certain.  Once I realized that I was going into a flare, Ron and I made a “suspect list” it included:

Flare Suspect List:

• Iron infusion – a large amount of iron at once, can have strange effects on the body

• Possible COVID infection – my Dr. said COVID can have effect on autoimmune conditions,  and I had a bad viral infection late November (but I tested negative for COVID on a RAT test.  This may have been a false negative)

• Stress from preparing for moms arrivals – she arrived Dec. 9th and I definitely felt more stressed preparing for her arrival

• “Wheat free” oats – I read that oats in Australia cannot be labeled gluten free, and that wheat free oats were the substitute

• Less yoga this month – I need yoga, it is a huge factor in my stress management plan

• Lychees – new food

• Omelet – new food, and previous suspect food

• Minced chicken – I discovered that mince often contains illegal sulphites, a known IBD irritant for me

• Pineapple- new food, and previous suspect food

• Maple syrup – I did not realize that this is not allowed on IBD AID

• Zucchini – new food, and previous suspect food

• New sunscreen – I wear sunscreen every day at work, and tried a new all natural one one

• Working in the heat – added stress factor, I believe this was a contribution to my flare last year

Most likely it was a combination of things on this list.  Making this list gave me a small feeling of control, and helped me get some perspective.

What Am I Doing to Get Back on Track?

The first thing I did was write the above ‘suspect list’. Then I decided to go on elemental meal replacement shakes, which have helped me in the past.  I drank only the shakes for two weeks.  I know that I should have done it for longer, but unfortunately I could not financially afford it.

After the two weeks on a strict elemental diet, I started to slowly reintroduce foods again.  I did not have a good response.  It seemed like everything that I ate was sending me to the toilet for a horrible, nauseous BM. 

I continued to drink 4 meal replacement shakes a day, to make sure that I maintained 2000 calories per day.  And only ate a minimal amount of food.

At this point I added slippery elm bark into my supplement routine.  I read online that it has helped many people with Crohn’s.  I also practiced my 30 minute heal meditation every single day.  And wrote ‘I AM healing, I AM healthy’ in various places around my home.  These mantras act as a useful tool for blocking out fearful intrusive thoughts.

After a few days of eating small amounts of strictly phase 1 foods, I was able to stomach a few items. Namely banana, almond butter, blended soup, wild caught fish, and papaya with lime.

My calprotectin taken on January 10th said over 800, and my bloods showed I had elevated CRP levels.  Interestingly, my iron levels were normal for the first time in over 8 years.

It is now January 18th and I am still experiencing some symptoms.  I am having 4 BMs per day, mostly solid (number 4 or 5, with occasional 7).  My last BM of the day frequently comes with nausea and pain.

My Mental Health

This has been by far the worst aspect of this flare.  When I started to realize that I was not just having symptoms of the iron infusion.  I had essentially had a mental breakdown.  Uncontrollably crying.  Could not get out of bed.  And honestly, thinking about how living with this much pain and suffering is not worth it.

This disease is just too much for me sometimes.  It is so hard not to think of how much easier life is if you are not sick all of the time.

I am also so terrified to get another abscess, and fistula.  The pain and suffering I went through earlier last year would be too much for me to handle again.  Just too much.

I want so badly to be healed.  I am literally willing to follow any diet, try anything natural if it gets my body back on track.

My ever supportive partner was right there with me.  Without him I do not know what I would do.  He cooked for me.  He let me cry, then forced me to get out of bed.  He reminded me what has helped me in the past, and helped me start the regime again.

It’s just so hard not to be so devastated by such a big set back.  Sometimes I feel like my mental health is so fragile.  And that it is solely dictated by how my digestive system feels.

I have since connected with a mental health specialist, who has experience working with patients with chronic disease.  My first appointment is next week.

 

I always try to remind myself that suffering leads to knowledge.  It leads to spiritual understanding. 

I know that one day I will understand how to manage my IBD.  I will be able to manage my symptoms the best that I can.  And stay in remission long term.

Each one of these setbacks is a learning opportunity. 

This is the reason that I have created this blog.