Mast cell disease and chronic constipation

Okay, folks.  I like to maintain the illusion that I am at least kind of classy, but I’m about to do something that will erase that perception forever.  It’s time to talk about poop.
One of the more embarrassing things about mast cell disease (and one of the things that doesn’t get talked about a lot) is the fact that it involves a lot of poop.  You spend a lot of time in the bathroom, and can never be far from one.  It is so disheartening and humiliating.
The very first time I had a full blown mast cell attack was in September 2010.  I had drunk a lot of alcohol, which was unusual for me, and had a very stressful week, which was not.  A few hours after I got home, I got nauseous and could not stop getting sick.  I also got diarrhea and spent the entire night in the bathroom. It was awful.  Imagine my horror when it happened again a few weeks later, and with increasing frequency until I was diagnosed with mast cell disease. 
In the few months after I was diagnosed, I started on several mast cell medications.  My mast cell attacks largely subsided, and diarrhea was no longer an issue.  Hooray!  There was much gladness throughout the land.  Then I went to Seattle and found I was unable to go to the bathroom.  I have written about this at length before, so I won’t rehash the details.  I went on to develop true bowel obstructions, as well as some pseudoobstructions, severe abdominal pain, bleeding, and literal inability to poop.  I got a colostomy in April 2013 and you could not pay me to reconnect my colon to my rectum.  It improves my life that much.
Diarrhea is more associated with mast cell disease because it is associated with anaphylaxis.  Even when not anaphylaxing, people often have loose stools and increased frequency.  However, a French study of mastocytosis patients found that only 12% had four or more stools per day.  Doctors are realizing that while diarrhea is more common during episodes or anaphylaxis, most patients find themselves chronically constipated or pseudoobstructed.  In that same French study, 57% of SM patients reported having at least two bowel pseudoobstructions a year.  Pseudoobstructions are when your body behaves like it has a bowel obstruction, but it does not.  It is often associated with long term constipation and GI dysmotility.
I pretty much consider myself the poster child for mast cell derived constipation, so I am going to tell you everything I tried and share all of my tips with you.  Please keep in mind that at the end, I was functionally unable to defecate, so I am relating the effect of my methods to their likely effect on you. 
When I started having major difficulties, I would make myself smoothies twice a day.  These smoothies had strawberries, pineapple, banana, yogurt and orange juice.  This made the stool softer.  I realize these are high histamine, which for some can contribute to diarrhea, and thus explains why it moved more quickly through my GI tract.  I tried adding this stuff called Green Super Food, which did not seem to make a difference and also smelled weird.  Later, I added two scoops of Metamucil.  I didn’t see any benefit, but it didn’t cause a reaction.  It was recommended by mast cell GI specialist. 
I took 300mg of docusate twice daily.  This is several times the recommended dose.  It made the stool softer and it moved through my GI tract more quickly.
I tried senna, which I later discovered can increase serotonin and exacerbate mast cell symptoms.  It did help move things along, but it made me very nauseous.
Glycerin suppositories did nothing for me.  Literally went in and stayed there.  I once punched a package of glycerin suppositories.  It was not my proudest moment.
Bisacodyl suppositories helped, but did not result in complete evacuation.  My rectum is damaged, so inserting suppositories was painful and caused bleeding.
Magnesium citrate worked if I also used a saline enema, but I had to drink two bottles of magnesium citrate.  It usually made me throw up and flush.  It was not a great option, but in an emergency, it was successful. 
Castor oil did nothing except make me grumpy because of how gross it tasted.
Saline enemas were my mainstay.  I used two every three days.  At the end, I sometimes needed to manually disimpact, which is as gross and humiliating as it sounds.  Frankly, I am only admitting it because I’m sure someone else has needed to do it and I want them to know that they are not alone and they are still awesome. 
I tried miralax because my very well intentioned PCP felt I should try everything before I had my colostomy, which I appreciate.  I took half a bottle and three days later still had to use enemas.  It didn’t hurt me or cause a reaction, it just did nothing.
About three weeks before my surgery, I met with a man who did bowel retraining at another hospital in Boston.  This therapy was originally developed for kids with Hirschsprung’s disease.  The idea is that the colon and rectum can be trained to pass stool at the same time every day.  This is a good option for people with long term constipation and can be done at home.  It works by picking a time every day (it is important that it be done at the SAME TIME each day), inserting a glycerin suppository and trying to defecate.  For most people, glycerin suppositories will stimulate contraction of the relevant muscles so you should not be straining.  DO NOT STRAIN.  I’ll get to that in a minute.  Eventually, your body becomes trained to defecate at the same time each day without the glycerin suppository.  For several reasons, I did not do bowel retraining, but it does work for some people. 
A lot of people who are chronically constipated have pelvic floor dysfunction.  This means that your muscles are not working correctly and so they are holding in the stool when you strain.  Often, you can retrain your muscles with biofeedback. This can be done by a physical therapist trained in pelvic floor PT.  
I strongly advise anyone with chronic constipation to get an anorectal manometry test.  This gives a lot of information about how your body feels relevant sensations and how it works when defecating.  I had this done twice before my surgery at two different hospitals.  In both instances, I was found to have substantial nerve damage and so my body did not feel the need to go the bathroom until about five times the normal amount of stool was present.  The stool sitting in the colon caused it to further dehydrate, making the problem worse.  It was the perfect storm of unmovable shit.  The man who did bowel retraining told me that he had never met anyone whose body seemed so determined to prevent them from defecating.  But he said it like it was an honor, which made the whole thing even stranger.
I find bowel transit time tests to be very helpful and easy.  You swallow a pill that contains a bunch of tiny corkscrews.  You get xrays taken at specific intervals (I think it was 1 day after, 3 days after and 7 days after) and the corkscrews show where they were pushed into the tissue.  If they were pushed into the tissue, it means the stool sat in that place for a long time.  It allows you to see which part of the GI tract is not working.  I also recommend a colonoscopy with biopsies and staining for mast cells. 
I have had many other GI tests, as I have had GI problems since well before I knew I had systemic disease.  I have had multiple endoscopies, esophageal motility testing, pH probe testing (this was before they developed the pill you can swallow that records the pH data), and an MR defecography.  I do think that there is a subset of people for whom this last one is a useful test, but if your doctor is ordering it, I encourage you to ask how the data they get will change your treatment plan.  It is literally being forced to defecate into a diaper in an MRI machine in front of a bunch of strangers when you know you can’t.  It was awful.  Again, I’m only admitting this because someone out there has had this test and is mortified and thinks they are alone and they are not. 
Straining causes as much damage as constipation.  It causes long term nerve damage, hemorrhoids, bleeding and fissures.  You should not be straining.  If you need to in order to defecate, something is wrong.
Though I was passing stool regularly and was no longer generally constipated after damaged portion of my colon was removed, I still got bowel obstructions.  Obstructions are unbelievably painful.  They hurt worse than getting my colostomy.  My bowel is herniated in a few places and it twists on itself so the stool can’t get through.  My colon also swells seriously when I have a mast cell reaction or anaphylaxis, which makes it harder to pass stool.
If this happens to you, and it is a new phenomenon, you should go to the hospital.  Bowel obstructions can cause bowel rupture and are serious.  If this happens to you regularly, and your doctor is okay with you managing at home, my recommendations are: hot liquids (tea works best, though not all mast cell patients can drink it); lots of water (IV fluids if possible); heat packing the abdomen; taking a hot bath; abdominal massage, especially if you can find the obstruction (it is hard when you massage the abdomen); moving, like walking or yoga.  All of these things also work for pseudoobstructions.  I know that heat is bad for some of us, but I find that in this situation, the benefit outweighs the risk of reaction for me.  Especially because the pain causes me to react anyway, so I’m generally already taking extra meds by that point.
Because bowel obstructions are so painful, we are often given opiates to manage the pain, which further decreases GI motility and reinforce the issue.  Most of the meds we take for mast cell disease also cause decreased GI motility, so we have to be careful with taking anything more that has that side effect.  I have found only two medical therapies to be helpful in managing recurrent obstructions: steroids and IV fluids.  Since starting IV fluids three times a week, I have had some bowel episodes but they were minor compared to the years of constant nonsense I had put up with.
The low residue diet is designed to be easy to pass through the colon.  However, it is not very masto friendly.  It is also called the “junk food diet.”  I will sometimes do it for a few days if I am very sore.  When I first started eating low histamine, I was very sore because my GI tract was working so much harder to digest everything. 
Sometimes there is no choice but to remove the damaged portion of bowel and place a permanent ostomy.  If you are considering this option, I am very happy to talk to you about it.  It is not the end of the world.  I am so glad I got mine.
I know this is a lot of information, but the bottom line is that a lot of people with mast cell disease can’t poop. It is painful and humiliating and I want them to know they are not alone.

15 Responses

  1. DebbiePlaysWellWithOthers September 8, 2014 / 4:09 pm

    Well Lisa, this pesky constipation issue over the past two months as my GI issues progress has had me using laxatives until a week ago! I’m lucky that I blunder along in life finding answers in the oddest ways at times. As I begin my new journey eating low histamine foods and avoiding yeast, I decided to make biscuits from scratch for the first time in ages. Instead of using baking powder I use 2 tablespoons of baking soda to the 4 cups of flour, two thirds of a cup of butter, they looked real pretty but they’re highly alkaline, surprise, surprise…my body loves them….things are working as they should again if I eat one or two a day! My dentist caused me concerns over my newly dry mouth that was highly acidic last spring, now it’s also back to normal. Last February I touted my body’s love of Black-eyed peas cooked from scratch with chicken broth and a Bay leaf as a miracle food, now I see it’s on my list of alkaline foods. I’m clueless why this is working for me other than the obvious and pray it continues as I experiment with another batch. Have you ever heard of anyone having this kind of luck? My indolent cutaneous systemic mastocytosis with pressure Uticaria
    Is such a curious condition filled with so much I don’t understand, with no local physicians who know a thing that it continues to amaze me how I muddle along. I’ve yet to have anaphylactic shock, and am sensitive to medications, lucky the few I take work right now, just had a breakthrough with my congested ears and tinnitus with drugs that work finally. Thanks for sharing all your thoughts…Debbie

  2. Camille Scott September 27, 2014 / 7:40 pm

    I take Senna Plus.. I haven’t found any others that work for me. What exactly does senna do that is a problem.

    I find constipation is my worst enemy. My worst reactions come with constipation. If I eat something bad my body won’t stop reacting until it is flushed out. If you are constipated it could be a while!

    • Lisa September 27, 2014 / 8:12 pm

      It can increase available serotonin, which can cause headaches, nausea/vomiting and diarrhea.

  3. Deb June 12, 2015 / 6:58 pm

    Thank you Lisa!
    I finally feel like I’m not alone.
    I too have monoclonal mast cell activation syndrome ( systemic Mastocytosis)
    I have been chronically constipated for the past 5 years getting worse over these years.
    I feel like the Dr’s don’t believe I have tried everything they have told me.
    I have had all tests you can imagine.
    All the ones you mentioned as well.
    Saw a surgeon today after having an anarectol manometer last week.
    Left with he will discuss options with my gastro Dr including possible removal of Colon.
    Kind of scary hearing that. Don’t know what to expect.
    Thanks again!

    • Lisa Klimas June 12, 2015 / 7:21 pm

      Not sure if you have been following the blog in the last several months, but I just recently had another colon surgery. You are definitely not alone in this. Good luck!

  4. Lori June 30, 2015 / 11:08 pm

    Thank you for this. I’ve been losing my mind for a year. MCAD, on Xolair since before it was FDA approved for MCAD (thank goodness for Genentech). The hives are gone, but in the past 13 months I have experienced what I can only think of as the worst form of torture. My stomach hurts constantly, I take handfuls of pills to go at all and feel like hell all of the time. I’ve gained 13 pounds so far from bloating and constipation. I’ve had a colonoscopy (they saw nothing) and suppositories do nothing for me because the problem I can feel is higher up the chain. I have become convinced it’s a nerve problem. Do you know if you have dysautonomia? Thank you for being brave and sharing your story to bring comfort to the rest of us that we are not alone.

    • Lisa Klimas July 1, 2015 / 4:49 pm

      I’m sorry things are so hard. I do have dysautonomia, I have POTS. My stooling issues are mostly neurologic. I have significant nerve damage in my rectum and the end of the colon. The colostomy allowed the rectum to heal some. I just recently had my colostomy reversed and connected the remaining colon to my rectum. I am doing bowel retraining in which I use a glycerin suppository every day at the same time and it forces bowel contraction to expel stool. I also take 600mg of docusate daily. It is not ideal, but it’s manageable. I still have a lot of GI pain in the remaining colon. I just recently started gabapentin to try and mitigate that to decrease my use of painkillers. This stuff is not for the faint of heart. I’m sorry that you are experiencing similar issues.

      • Lori July 3, 2015 / 10:07 pm

        Thanks for your reply, Lisa. It’s been miserable. The reflux is getting much worse each day. My doc is trying to get me in for an endoscopy before I head off for 2 straight weeks of conferences. Travel makes me worse so I’m absolutely panicked about it. I hope you have a better than average weekend. It’s good to know we’re not alone but it’s even better to know we’re all rooting for each other 🙂

    • Lisa Klimas July 1, 2015 / 4:50 pm

      Also, Xolair is still not approved for MCAD. I’m glad you were able to get it covered.

  5. Lori July 4, 2015 / 2:43 pm

    I just noticed your Xolair comment. Xolair is approved for chronic idiopathic urticaria, which I did have– quite badly– for years. Within a couple of doses of Xolair I was 100% hive-free. CIU is one of the common symptoms associated with MCAD, so I often think of it as synonymous even though it isn’t. Happy and healthy 4th to you and yours! – Lori

    • Lisa Klimas July 4, 2015 / 8:05 pm

      Yes, Xolair is now approved for chronic urticaria. But CU has its own criteria and many mast cell patients don’t have skin issues. Some mast cell patients have gotten approval without CU so hopefully we will see more success with this.

  6. Erin kolb December 22, 2015 / 9:23 am

    Thank you so much for your honesty & humility! This is much needed information for many!

  7. Jael Kenite January 28, 2016 / 4:28 am

    Does anyone else ever have hives in their mouth? It gives me a horrid taste in my mouth. I have little red dots like I poked myself with a needle all over my mouth when I get a pressure rash from my underwear or a belt or my socks and shoes. It takes weeks to go away. I tried to take a picture of it to show my doctor but the flash on the camera makes my face bright and my mouth dark. Sometimes it’s at the same time that my anus is rashy. The itching from these rashes is like endless outbreaks of shingles. And what are people doing for the ringing in the ears. Also, has anyone else ever had optic neuritis?

    If I ate a banana I wouldn’t be able to poop for 3 days, and only after doing acrobatics over the toilet. I take 1200mg of magnesium, 20 potassium and a Colace every day just to hope for a bowel movement every other day if I stick to a mostly vegetarian diet. I’ve lost all my reflexes from taking so much mag. About once every 2 to 3 months I get cramping, explosive diarrhea and then right back to all fours on the toilet seat trying wiggle something out.

  8. Michelle Dellene April 15, 2016 / 1:03 pm

    Gosh you are a treasure trove of information here. Every time I google a question, up pops a link to your site with all the answers. My GI symptoms are not nearly as bad as yours but I do struggle with constipation more than anything. Thanks for this post, it helped a lot.

  9. Laurie April 26, 2016 / 4:54 pm

    Hi Lisa,
    Just signed up to follow your blog about a month ago and I’m really appreciating you!!! Not diagnosed yet, but I’m sure I have mastocytosis! After reading your article above, I’m especially grateful.
    I’m having the same problems, which started maybe four months ago. As an RN, I knew it was serious! It felt as though my GI tract had stopped working and I knew the severity of that. I’ve been sort of managing with senna and enemas, but got suppositories yesterday thinking I’d do that prior to switching my self prescribed antihistamine to a doctor prescribed antidepressant – I’ve heard that antihistamines can cause the gut to slow so I thought that might be a possible solution. The sups make much more sense than taking on all of the potential side effects of an antihistamine however!
    I wonder if you ever tried Doxepin or what your thoughts are on the relationship between antihistamines and the gut ‘shutdown’ you’ve experienced? I haven’t found any related articles, but did come across some related study information on mast cells being responsible for gut motility.
    In sincere GRATITUDE,

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