My journey with IBS-C

[Daniel]

I found this site doing a google search for IBS support groups. I was diagnosed with IBS-C last year at 45. My symptoms started after taking the antibiotic, Cephalexin, that my podiatrist prescribed for an ingrown toenail that had become infected. My gastroenterologist recommended Pearl probiotics, a low FODMAP diet, soups, warm water, and Senokot. Both she and my family doctor sent me home with samples of Linzess and Trulance. The Linzess gave me instant relief, but was like taking magnesium citrate or Suprep for a colonoscopy (which I had in June). I also had an abdominal CT that came back normal. I consulted with a wellness clinic which recommended $1,400 in tests (food sensitivity, stool, etc...), but they did not accept insurance, so I did not move forward with them. Besides, my doctor had already done food allergy testing. In September, I switched from the Pearl probiotics to the less expensive Member's Mark 10 Strain Probiotic from Sam's Club. After three weeks, I was having normal bowel movements without the Linzess. I thought that I was cured until mid-December when my symptoms came back with a vengeance and even the Linzess didn't help. That's when I switched to the Trulance, but I found that I had to supplement it with Lactulose after lunch and Senna-S before bed (plain Senna caused abdominal pain) in order to have a normal stool in the morning. Then, I read somewhere that the long term use of Senna can damage the colon, so I've stopped taking it daily and alternate between the Linzess and Trulance. My gastroenterologist referred me to an Herbalist, but I have not made an appointment with them, yet. I'm currently trying Florastor along with another probiotioc/prebiotic/digestive enzyme I found on Amazon even though my family doctor said that the studies are inconclusive as to whether or not probiotics help with IBS. I've tried several different fiber supplements, too, after reading that insoluble fiber helps with constipation, but my family doctor said they just bulk up your stool. I'm about to try a supplement for leaky gut to see if that helps. My goal is to get off of these expensive prescriptions. I'll keep you posted.

[Jeffrey Roberts]

Dear Daniel,

Thanks for finding us and sharing your story.

You have tried a lot of different treatments over the last year. I think you've found something that we all found... there is no ideal treatment. While the medications are expensive, it sounds like Linzess offered you instant relief. Could you try taking it less often and see if you get the same results? There really is no positive research about fiber, probiotics or supplement for IBS-C. A lot of people use miraLAX daily or several times weekly. For some people, they find that it works just as well as Linzess.

Let us know how you make out.

[Lindsey Parsons]

Hi Daniel,

It can be frustrating shooting in the dark at trying to control your symptoms when you don't know what's causing them, but given they started after taking an antibiotic, odds are it's related to candida overgrowth (which regular docs don't recognize or treat). The only reliable test to determine if this is the case is the Organic Acids Test. I use that with clients who have a likely history that points to candida. You can find out more about in a booklet on my web site: https://highdeserthealthcoaching.com/

Best of luck!

Lindsey

[Daniel]

I came across the IBS Treatment Center website the other day, and they attribute IBS to small intestine bacteria overgrowth (SIBO), parasite, candida, and/or exocrine pancreatic insufficiency (EPI) among other things. I consulted with a couple more gastro doctors that said I would have diarrhea with SIBO, and parasites are not common in the US. One ordered a Sitz test which I probably won't do, and the other seemed to know less about IBS than I do. 

The leaky gut supplement I ordered got lost in the mail, so I went to my local Vitamin Shoppe and bought a couple of the main ingredients that appear in most of the leaky gut supplements I looked at, namely L-Glutamine and Aloe Vera Leaf. I also saw a Dr. Oz show where he recommended chia seeds and kiwi for constipation (both are high in fiber), so I'm adding them to my morning smoothies along with the L-Glutamine. I still take a probiotic or digestive enzyme with lunch and the Aloe Vera Leaf and magnesium with supper as my multi-vitamin is low on magnesium. I also take a tablespoon of apple cider vinegar in the morning and crush up a homegrown peppermint leaf (IBgard contains peppermint oil) in my afternoon green tea. I stopped taking my Linzess and Trulance last weekend and seem to be doing fine without them. I'll probably keep taking the supplements above until I run out of them and then see how I do without them. I'll let you know if anything changes.

[Daniel]

Sorry, I meant to include this in my last post. I snack on these nuts, too, which I remember doing the last time I went off my prescriptions. They are high in fiber and magnesium. I also cut back on dairy by substituting almond milk for regular milk (which consequently lowered my cholesterol levels).

[Daniel]

Well, I almost made it a year without harsh prescriptions, but I noticed my dependency on MiraLAX was increasing, so my PCP put me back on Linzess for the time being, but even it is not as effective as it was before. I am trying Culturelle IBS Complete Support, too. Also, I forgot to mention that I am a papillary thyroid cancer survivor (10 years) and take Levothyroxine for that as well as calcium and vitamin D since I had my thyroid and part of my parathyroid removed. I read in another post where someone tied hypothyroidism to CIC. I know calcium can cause constipation, too, but I take it to combat osteopenia. My thyroid levels and bone density are normal for now.

[Daniel]

My new insurance doesn't want to approve my Trulance, but thankfully I was able to stop my prescriptions again last week. Maybe the Culturelle IBS Complete Support is helping. I did experience more bloating initially, but they say that's normal and a good sign. My PCP recommended Culturelle's probiotic + prebiotic, so I've been alternating between that and the Walgreens Daily Probiotic with Saccharomyces Boulardii (their store brand for Florastor). I also ordered some Calm which is a magnesium carbonate that turns to magnesium citrate when mixed with water to replace the magnesium chloride I've been taking because I read that magnesium citrate is more easily absorbed, and I can better manage the dosage since it's in powder form. I'll let you know if anything changes. Hope this helps and good luck!

[Daniel]

I had to go back on my prescriptions shortly after my last post. My gastroenterologist got the Trulance approved and ordered an abdominal MRI which came back normal. She also said it was ok to take Senna-S in addition to my prescriptions. It seems traditional medicine alone does not have the answers I'm looking for, so I went ahead with the food sensitivities and micronutrient tests from my local wellness clinic. The results confirmed IBS/IBD and showed that I was sensitive to everything which is to be expected when you have leaky gut. They put me on GI Revive by designs for health which is basically a leaky gut supplement, and Boswellia Phytosome by Thorne which is an anti-inflammatory. Both products are available on Amazon. The tests also showed deficiencies in Glutamine, Vitamin K1, and EPA and suggested specific probiotics. I found this helpful as the probiotics I had been taking were not the right ones for me. Now, I'm taking Probiotic 120 Billion CFUs by Innate Vitality which contains the ones they suggested. I've also added alfalfa (as recommended in Prescription for Nutritional Healing) and cod liver oil to my smoothies to raise my Vitamin K1 and EPA. I shared the test results with my PCP and gastroenterologist, but my PCP admitted this was outside of his realm of expertise. He referred me to a local gastroenterologist that specializes in micronutrients, though, so I'm keeping that in my back pocket for now. I came down with COVID a couple weeks ago and decided to once again stop my IBS-C prescriptions. So far, so good. I'll let you know if anything changes. Hope this helps and offers hope to others suffering from IBS-C. 

[Jeffrey Roberts]

Thanks for the update Daniel.

Since your first posting, the American Gastroenterological Association has posted new clinical treatment guidelines for IBS-C.

A summary by Healio Gastroenterology is available here, https://www.healio.com/news/gastroenterology/20220621/aga-proposes-first-pharmacologic-treatment-plan-for-patients-with-ibsc-ibsd

[John Arnau]

Hi, my name is John Arnau and I probably should have looked for this support group a long time ago.  In 2012, I was diagnosed with IBS-C after going through an extremely stressful time at work.  In hindsight, I'm not sure if my A-hole boss at the time was the cause or it's just because I was about 44 and my intestinal tract didn't work very well anymore.  I also have Barrett's esophagus and a hiatic hernia either from the same years of stress, or because I drank about a million cups of coffee a day.  I was a caffeine addict - coffee, Cokes and 5-hour energy drinks, probably somewhat typical for workaholics (i.e., I know stay away from all caffeine with a 10-foot pole).  I was prescribed Librax and Bentyl when I have an IBS-C attack (along with peppermint pills) which help with the abdominal distension, which normally lasts between 7-10 days.  I can't do much during these attacks other than sleep, eat, go to the bathroom and watch T.V.  Ex-Lax is a godsend, as it turned my pain from a 10/10 during IBS attacks to a 5/10.  Thankfully, I was able to retire two years ago at age 54.  Working was becoming more and more difficult.  I didn't want to use the bathroom at work because of the foul odor that my IBS would create, and I knew that everyone would know that it was me (I would carry a lighter with me just in case I had to go).  It's confusing trying to know what to do when you've never been really sick before and the gastroenterologist and internal medicine doctors don't really know how to help you.  The low Fodmap diet is crap for me.  It includes a lot of vegetables, and vegetables, either cooked or raw, are guaranteed to cause a horrible IBS attack with me.  I feel so isolated and alone and would like to meet other people that suffer with IBS-C.  It seems like medical science knows a lot more about Chrone's Disease and Ulcerative Colatis than IBS.  I can't take Linzess (even a half dose) as it gives me horrible diarrhea and painful intestinal bloating.  Miralax and Citracel also give me painful intestinal bloating.  I'm not in a bad place, the way I was seven or eight years ago, but can anyone recommend other things I should try?  I really hate being sick almost half of every month for the last ten years.  I've really become two people - healthy John and sick John.  I worry that maybe I now have two personalities.  Thank you!

[Daniel]

Just a quick update to let you know that I'm doing well without my IBS-C prescriptions that I stopped taking after my bout with COVID last July. I have also stopped using alfalfa in my morning smoothie after reading on webmd that long-term use is likely unsafe. Hopefully I'm getting enough vitamin K from the kiwi and spinach in my smoothies. I discontinued the Aloe Vera Leaf some time ago, too, over similar concerns.

Here's my super-duper pooper smoothie recipe:

1 cup organic blueberries (frozen)

1 cup organic strawberries (frozen)

4 chunks of pineapple (frozen)

1 banana (frozen or fresh)

2 kiwi (fresh)

3 tsp L-Glutamine

3 scoops chia seeds

1 cup organic tart cherry juice (refrigerated)

a handful of organic spinach (frozen or fresh)

and enough water to get the desired consistency

It usually lasts me 3 or 4 days. I keep it in a shaker bottle in the refrigerator. I mix a tsp of Carlson Wild Norwegian fruit splash flavored cod liver oil into my cup just before drinking a serving of it.

Besides my daily smoothie, I still keep magnesium, MiraLAX (or a generic store brand), fiber therapy (Methylcellulose), Senna-S, and a probiotic/prebiotic with enzymes in my medicine cabinet, but fortunately I don't need to take them every day anymore. If my poop type is a 1 on the Bristol stool chart (hard lumps like nuts), then I know to take some MiraLAX before bed. If I don't get my 30+ grams of fiber for the day, I'll take a couple fiber therapy pills (I used to keep a fiber log, but now I instinctively know when I need to take a fiber supplement). If I eat a lot of meat or foods high in magnesium, I probably don't need a magnesium supplement. If I'm feeling uncomfortably bloated or gassy, I'll take a probiotic/prebiotic with enzymes. If I'm traveling or eating out a lot, I'll keep the Senna-S handy. You'll begin to learn your trigger foods, too. One of my triggers is flour tortillas. 

Hope this helps. Good luck!

[Daniel]

Just like before, I made it almost a year without my prescriptions, but I'm back on Trulance for the time being. It has also been a year since I took the GI Revive. While it worked well for me before, I've decided to try Liver Medic's Leaky Gut Repair this time as it is less expensive and has a similar formulation. I found the few missing ingredients in pill form except for the mucin. I considered Terra Origin's Healthy Gut supplement, too, but I was concerned about the copper in it as my iron levels are already high. My goal is to be off the Trulance by the time I've finished taking the leaky gut supplement. If successful, I'll just plan on taking a leaky gut supplement about every 11 months to try to ward off another flare up. I'll keep you posted. Good luck!

[Daniel]

I was able to stop my Trulance again last week and will finish my leaky gut supplement this weekend. I also went back and reviewed my micronutrient test results from last year and saw that I actually scored lower on intestinal permeability and metabolic health than I did on IBS/IBD. Both of those tests showed low levels of Akkermansia muciniphila, so I'm taking Akkermansia by Pendulum. They also showed very low levels of the Lactobacillus genus, but all the Lactobacillus species they tested for were normal except for Lactobacillus fermentum which was low and Lactobacillus ruminis which was high. The specific probiotics they suggested for me include Bifidobacterium bifidum, Lactobacillus fermentum, Streptococcus, Lactobacillus, and Escherichia coli Nissle. Anyway, I'm trying to eat more yogurt, Kefir, Kimchi, and sauerkraut rather than just taking a probiotic pill. Also, my routine physical in May was all normal. In fact, my cholesterol actually went down. I attribute that to the cod liver oil I add to my smoothie.  I'll let you know if anything changes. Good luck!