I could really use some guidance! (about IBS pain along with IBD)

[Meeshannie]

Hi there! I was diagnosed with IBS by my gastroenterologist following a colonoscopy in January 2022.  I am 58 years old and my last colonoscopy was in 2010 When I was diagnosed with Ulcerative Colitis, or actually Proctitis since it was so localized. My symptoms in 2010 were bloody stool so it was very obvious when I was flaring. I was given a prescription for Canasa and found a support group that recommended a Paleo diet. This worked great for me for many years.  I stayed (mostly) grain free and dairy free and felt that I had a very good handle on what foods could trigger an attack. In January, I had another colonoscopy because I was waking up with horrible cramping and abdominal pain. After my colonoscopy my doctor told me, " Good News! No UC, Bad News you have IBS." He also prescribed Dicyclomine for my cramping. Interestingly enough, my cramping usually happens in the middle of the night- not during the day. I also have not been able to find any correlation between my diet, abdominal pain and quality of my stool. In October, My daughter in law, who is a dietitian, gave me a blood test-  believe it is called the Mediator Release Test. The results were very confusing to me. My number one and only "red" food was peanuts- something I rarely eat.  I have a number of "yellow" foods- mushroom, celery and apple amongst others that I consumed on a regular basis. I was very surprised to also see almond as a yellow food- Since my UC diagnosis I mostly use almond flour, eat almond chips and avoid wheat!  For the last few months I have avoided peanuts and most of my yellow foods. Yesterday I did something different! I ordered a rice bowl with chicken, steak and black beans from Chipotle. I enjoy spice but to say this was extremely spicy is an understatement! I was at work with nothing else to eat so I did have most of it. I woke up at 4AM with intense cramping and belly pain- a 9 on a scale of 1-10. I took a Dicyclomine and tried to sleep. Two hours later I had a normal formed stool but still intense pain. I started looking for support groups and found this one! I'm really at a loss-the only thing I can think of is that I was not tested for black beans- just pinto. I would appreciate any advice- I don't know if I have IBS-D or C, I feel that my main problem is pain. I am also HLA-B27 positive so I have the inflammatory marker. I would appreciate hearing from others that may have the same issues as I do. Thank you so much!

[Jeffrey Roberts]

Hello Meeshannie,

Welcome! Your situation is a bit more complicated than most who are dealing with IBS. I'm going to try to unpack it.

I completely understand your situation as I also have Crohn's disease (in my colon) along with IBS. When my Crohn's flares it often presents as proctitis so I know exactly what you are going through. I too have used Canasa to manage the flare, but have also had to use steroid enemas when the canasa doesn't quite do it.

You seem to be very diet conscious. Do you actually have a gluten problem or are you lactose intolerant, ie: grain free and dairy free. You might not be aware of the low FODMAP diet that has been quite helpful for people with IBS. There is evidence that it can also help IBD. The low FODMAP diet is not meant to be permanent. You use it, under the guidance of a Dietitian, to determine how much of each food high in FODMAPs you can tolerate. The low FODMAP diet might explain why many of the foods that you have identified give you trouble. Handy to have a daughter in law who is a Dietitian. Working with a Dietitian who is certified with the low FODMAP diet is best.

Your Chipotle meal would have caused a great deal of trouble for me too. I cannot tolerate that amount of fiber in one go. The black beans are difficult for anyone, regardless of UC or IBS, to manage. High fiber is not necessarily friendly to people with IBS. Doctors used to push fiber for IBS, but now appreciate that soluble fiber is more tolerable than non-soluble fiber.

Dicyclomine can be helpful to manage pain as it is an anti-spasmodic. It doesn't work for everyone and really is just masking the problem rather than dealing with it long term. You might want to talk to your doctor to see if they have any experience with managing pain with either a low dose of a neuromodulator like amitryptiline or duloxetine or a newer gabapentinoid like pregabalin or gabapentin. These take some time to get used to and might lower the volume on the intense pain front.

To be honest, I had to look up HLA-B27 as I had never heard of it. It's not something you hear about with IBS.

I hope this is helpful.

Jeff

[Didge]

Hi Meeshannie,

Please see my recent thread about "Annatto".

I'm not medically trained but I am aware that peanut allergies are cross-reactive with annatto. LTP allergies often present themselves in ways we don't usually associated with allergies.

Avoiding annatto for a few days may be worth a try, although I believe it can be listed in the US as "Natural Color".

fingers crossed it helps,

Didge.