Diverticulitis

What?  On a Porphyria blog?

Think about it – with constant intense colon spasms during acute attacks and persistent feeling of constipation, it is bound to happen.

From what I understand, most occurrences of diverticulitis happen at the exit of the colon and are generally because of straining.  However, in my case, the problem is at the beginning of the colon…yep, by the liver & (removed) gall bladder.  Straining is not a problem, with all the fruits and vegetables that I eat.

Ok, there is a difference between diverticulosis and diverticulitis.   But, my focus is on diverticulitis & avoiding it.

Anyway, finding out that I had it was a problem in that I thought I was having Porphyria attacks.   Also, if felt like I had a fever in my belly.  And, doctors were no help; actually, they were more of a danger, than anything.  I ended up getting an MRI, that found the problem.

Because of the diverticulitis, there are a number of foods that I have to avoid – nuts, seeds, rice, rosemary…basically, anything that can get caught in colon folds or that can irritate my colon.

Rice?  really?   An acquaintance, who also has diverticulitis, said she had problems with rice; so, I cut it from my diet & viola!  It really helped.  It turns out, from further testing, that rice will not bring on a diverticulitis attack, in me; but, it does make my diverticulitis problems worse.  So, I only avoid it when I am having diverticulitis problems.

Powdered oregano and powdered rosemary do not cause me problems; but, it can be hard to find.  Also, fresh oregano is a good option, too.

 

 

14 Responses to Diverticulitis

  1. Mary Carmen says:

    Hi Greg,

    I wanted to thank you for such an informative blog. I’ve been ill for most of my life and only recently have I started to suspect that I might be suffering from a form of porphyria.
    My symptoms are mostly neurological and digestive.
    However, I’m in doubt about my digestive symptoms, since my pain and discomfort seem to be chronic and constant, rather than acute (and yes, I’ve been scoped several times, so no apparent reason other than pre-diverticulitis and coeliac, for which I’ve been following a gluten-free diet for years with not improvement–I actually doubt this diagnosis).
    I wanted to ask you or any other readers of your blog to describe as accurately as possible your digestive symptoms on a daily basis. For comparison’s sake, since most of the sites about AIP just mention “acute abdominal pain” without any particulars.
    All my other symptoms match, except for the “acute pain”.
    I might also be so used to the pain that I don’t consider it so acute anymore, but I’m mostly wondering whether there are milder porphyria cases presenting all the symptoms in a less extreme fashion.
    Thank you and best regards,
    Mary Carmen

    • Greg says:

      Hi Mary,

      I think acute refers to the deep, serious attacks. At least, in my experience, I can feel general abdominal discomfort for days; and, it is not constipation. When I do have an attack, the pain can be centered around my liver, gall bladder, right side colon. Other areas that the pain of acute attack appear is in my chest/diaphragm area or at the end of my colon. Sometimes, acute pain is in my back…strange.

      The title Acute Intermittent Porphyria leads one to think that between attacks everything is ok; that is not true in my case. But, then again, I do have 3 different types of porphyrins that are out of range. Anyway, even when not dealing with an attack, I have to deal with low energy, abdomen discomfort, and emotional issues (paranoia, anger).

      I have family members that don’t exhibit porphyria symptoms; but, they have other liver & gall bladder issues. There is no doubt in my mind they are caused by the break down in heme production.

      Back to the gluten free – once, after a hospitalization, I had some problem with gluten. I think it was because my system was so weak; because, avoiding gluten really solved no problems & eating gluten (after recovering from attack that put me in the hospital) causes no problems. Gluten free diets are a popular trend; so, I think that gets introduced too quickly into researching problems.

      I am glad that my blog is helping you.

      Greg…

  2. Sonali says:

    Hi Greg,

    I have been reading ur blog and I can definetly say that you are doing a wonderful job….thank you 🙂
    I am very new to this Porphyria thing my 24 hr urine result was a lil rough. So my GI doc has referred me to Mayo clinic for re-testing and further investigation . I basically suffer from Biliary dyskensia (9%) but I still have my gallbladder somewhere I always felt that my GB cannot be the culprit and so did my doc.
    I have got very basic questions for you bcoz I am just going crazy thinking and getting scared.

    I do have right side upper abdomen pain but sometimes I get middle upper abdomen pain somewhat like a burning pain do u think it is the porphyria or my Gallbladder pain. Also I do get mid upper back pain …it’s so confusing and my doc app is after 2 months!!!!

    One last thing after few days I will b going on a vacation to a national park and I m so freaking scared that what if I get sick . Do you have any suggestion for packing anything which can keep healthy or at least somewhat manageable

    Thanks a lot

    • Greg says:

      Hi Sonali,

      Thank you for the kind words. I am sorry to hear about your problems.

      I am not sure that I understand your comment about the 24 hour urine test – was it positive or negative for porphyria?

      Pain in the upper right side of your abdomen – that is really a tough question & I am not in a position to be able know the answer. The only thing, that I can do, is share my situation. I do know that I have porphyria, I do know that I have diverticulitis, and I do know that I don’t have a gall bladder. My diverticulitis is at the beginning of my colon, which is at the upper right side of my abdomen. When I have pain in that location, I have to decide whether it is porphyria or diverticulitis. Sometimes, I can tell by the type of pain (and experience); but, if I am unsure, I have to behave as if it is both. In other words – glucose, magnesium, and possibly pain killers, for the prophyria & switching to bland food with little roughage, for treating the diverticulitis. If I take my porphyria pain killers (Donnatal) & the pain stays, then I know that it is diverticulitis. At that point, I take ibuprofen for the pain & continue with a bland diet. In either case, I still have to react if I am having a porphyria attack; because diverticulitis, like any infection, will cause a porphyria attack.

      For your vacation, read my posts on Mar 31, 2014, called “Food on the Road”, May 10, 2014, called “Visit to Washington, DC”, and June 6, 2014, called “Air Travel & Porphyria”. I do hope it helps. Traveling always concerns me.

      Best of luck & please keep us updated on your progress.

      Greg…

  3. Sonali says:

    Thanks a lot for ur reply. Yes in that report it did say I have porphyria but what kind it still needs to be investigated and also my doc feels that it should be thoroughly investigated before starting any treatment.
    I guess I will carry glucose tablets and watch my diet as I always do for my gallbladder. It just feels so nice to share with someone who understands my health issues.

    • Greg says:

      It is easy to feel isolated, even when your family and friends know about the problem. I guess part of it is having such extreme and difficult needs. Even the doctors don’t really get it, or so it seems.

      In my case, it is not all that important to know exactly what kind of porphyria, because it will not change how we manage it. I have primarily acute symptoms; the only time there are cutaneous affects are when I get a sunburn. Of course, I would still like to know which name(s) to attach to this. I’ve tested positive for 3 different porphyrins. But, it boils down to how much money and time do I want to throw at coming up with a name. I have blood tests every 6 months; so, we have ruled out the need for this like phlebotomies, or anything other than trigger avoidance and getting proper nutrients and sufficient carbs.

      Be careful with “treatments”, most medications have significant side effects & they all have to be processed by our, already overworked, livers.

  4. Thank you for your web site. My fifty year old daughter has been bedridden for ten months. Every test has been preformed with a negative results except porphyria. The doctors have been testing for porphyria since March. She has been to the emergency room four times and by car about six times. Never any help. Last Sunday during our uless trip, I told the doctor to call her oncologist hymatolist for directions how to treat
    her because they think she has porphyria. His response was I know all about porphyria.I responed, WHAT A BLESSING!!!!
    When he returned he told her”I know what’s wrong with you. You have a kidney infection. I will order an antibiotic.”
    Are you going to check if it is safe? Why is she allergic to something. Yes and there are unsafe drugs that she can’t tolerate. I ckecked and it was safe.
    She asked was he going to do something for the horrible headache and traffic nasua.
    His response was you can take Tyennol when you get home.
    I took my sweet darling home and watched her crash even more.
    Monday we saw her specialest. He gave her glucose and something for nausea.
    She had a great relief. It has been six days and she still can’t function.
    Waiting on another 24 hour urin test results, blood work and stool sample.
    This is the first time I’ve written anything about my presious daughter.
    If anything it has been therputic for me to air my thoughts.
    I have spoken to Desiree Lyon Howe from the American Porphyria Foundation and she is so kind and helpful. I will be intouch with her as needed.
    Thank you for having your web site. I’m sure you have helped many people.
    May God bless you and yours. Sincerely, Jo

  5. Ara says:

    Amazing, rice triggered my first diverticulitis attack. How did you get your doctor to order an MRI for a digestive issue. I asked a gastro today about it and she said that you cannot see diverticulitis with an MRI…

    • Greg says:

      Well, it just kind of happened. I was hospitalized for what I thought was a porphyria attack, only the Donnatal was having no affect on the pain. The hospital was brand new, with lots of new equipment, not many patients, and bored doctors. Voila! I won’t debate whether you can or can’t see diverticulitis on an MRI; but, the diagnosis was accurate. Now, I avoid foods that will cause either porphyria or diverticulitis. I believe that most of my diverticulitis problems are a result of the severe spasms brought on by porphyria attacks. My diverticulitis problems have dropped off dramatically with the decrease in my porphyria attacks. I still have lots of porphyria problems; but, with 24/7 diligence, the painkiller level attacks are few and far between. I just wish I could get rid of all the energy lows, feelings of yuck from the toxins, and the constant infections/virus’. But, you understand that.

  6. This is really great info.I suffered from diverticulitis for many years and this is the type of advice that really helped me to overcome my problem. So, to all you sufferers, YES! There is hope! Just don’t lose faith and know that your body can heal itself.I was lucky to find some great plans that helped me heal my intestines, reverse my diverticulitis, and get better.Here is one of the resources that helped me a lot:

  7. This is really great info. I suffered from diverticulitis for many years and this is the type of advice that really helped me to overcome my problem. So, to all you sufferers, YES! There is hope! Just don’t lose faith and know that your body can heal itself. I was lucky to find some great plans that helped me heal my intestines, reverse my diverticulitis, and get better. Here is one of the resources that helped me a lot:

  8. Mark Andrew says:

    Very informative information posted here by all the people but I was wondering lately that why we only have this diseases in only 8 countries with maximum 90 % of patients.
    And I was doing a research for my medical papers when I found that 200 other countries do not have this diseases and then after having searched over the intertnet about this I was very much convinved what Mike Hohlweg is telling about this: that it is our food that we eat each day, he has done extensive research and advised a very comprehensive diet for this painful diseases. He has a website it is https://diverticulitispainfreefoods.com/home.

    • Greg says:

      Hi Mark. Very good post; thank you for the link to diet & diverticulitis. I am convinced that diet is the cause for the vast majority of people with diverticulitis problems.

      On the other hand, I am thoroughly convinced that the problems that I have with diverticulitis are caused by the intense porphyria induced spasms in my colon & other smooth muscles. It is very common for me to have diverticulitis flair ups after strong porphyria attacks. Unfortunately, porphyria is a hereditary disease (with the exception of, I think, PCT, which can be induced by toxins). However, like diverticulitis, porphyria symptoms and attacks can be greatly alleviated by proper diet and trigger avoidance.

      I don’t know how common diverticulitis problems are with porphyria sufferers. The pain for both problems can be in the same area and are frequently at the same intensity. One way that I sort it out is if donnatal addresses the pain; if it does – it’s porphyria, if it doesn’t – its probably diverticulitis…then I act accordingly.

      Again, thank you for reading this blog & commenting. Comments are very helpful to all of us. I hope it was not too difficult to post your comment; I have to have a filter because of all the spam that was getting through.

      Greg…

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