I have found that eating a mostly keto diet is helpful in controlling inflammation but can be problematic while living with an ileostomy.
If you do not know what an ileostomy is, or are not concerned with the ins and outs of living with one, this post isn’t for you. My hope is that someone googling for this specific combo of health issues will stumble on this after randomly drilling into the fifth page of Google results and what they read will help them.
Let’s break down each element of the title and then discuss how they are related:
Keto - or the Ketogenic Diet - in practice, for me, it is a low carbohydrate diet. Often higher in fat, to keep feeling full. With as many vegetables as I can stand to eat. In practice I either don’t eat breakfast, or have some type of meat and eggs (occasionally, cheese and nuts). Lunch is either a salad (with cold cuts or chicken in it) or some leftovers (occasionally, keto mug bread made as a grilled cheese or a sandwhich). Dinner is normally a meat of some kind (or fish) and a couple of different veg, etc.
Ankylosing Spondylitis - imagine if your body was trying to fuse all your vertebrae together by building up calcium on your vertebrae. This can cause all kinds of mechanical arthritis, limited mobility, and so on. It also causes inflammation in near by tissues. It can be coincident with Crohns and is for me.
Ileostomy - when you have Crohn’s you get a lot of colonoscopies. My MD saw me for a routine check up a few years back, looked at me funny, and requisitioned a colonoscopy even though I had recently had one. A few weeks later I was hearing that a second one which included biopsies had revealed I was going to have colon cancer in the next year or so and it had to come out. What is left is a an ileostomy (basically, I wear a medical appliance on my abdomen where my small intestine comes through my abdominal wall and that’s how I take care of business). This is permanent.
So how do these all come together? Even though my Crohn’s and AS are in remission, I still have a lot of inflammation which can get so bad I am scared to walk downstairs in case my legs buckle from the pain. I was miserable and could barely get out of a chair a few weeks back because of this.
When you have a lot of inflammation it can really affect your quality of life and my wife was noticing how bad it was. We had a talk. She reminded me that when I had done a Keto diet my inflammation really died down. She was right. I love bread and starch so I don’t really want to go on this diet but she was right and I did. By the evening of the second day, I was pain free. Like magic. So Keto controls inflammation. How? I am not 100% sure but it could be related to insulin somehow.
At any rate, I think this last flare up scared me straight and I’m committed to Keto. But there’s a problem. The lack of starch is causing my ileostomy output (you knew it was coming) to be very “loose”. This can be mitigated somewhat by eating more vegetables like Cauliflower that have some soluble fiber in them. It is aggravated by eating greens and so on as these do not fully break down. But I like salad. So, for someone just getting into the Keto, this could be very discouraging. However, it seems to get better over time, especially if you are eating enough veg.
A secondary issue is weight loss/size loss. On Keto you lose a lot of water weight, quickly. You also seem to get leaner very quickly (to a point). The net effect is your appliance adhesive has a hard time since your abdomen is shrinking a little. I find myself changing my appliance much more frequently and have had a few near misses with leaks. This, too, is a manageable problem.
I find both of these problems are worth dealing to be pain free. The last time I did Keto, I apparently did not. I stopped because of this. I would add in little bits of starch at each meal. Then I started to snack on bread outside meals, etc. Slippery slope. I am writing this to record how I feel right now so if I start to backslide, I can read this and remember why I am doing this.