Skip to main content

This seems to be an underdiscussed topic on this board, for reasons that are not clear to me. For many years, my PCP has been concerned about my cardiovascular health, telling me that IBD is associated with an increased risk of coronary artery disease, atrial fibrillation, heart attack, and stroke.  I had my annual physical Tuesday afternoon, and he ordered a Coronary Calcium Calcium Scan:

https://www.mayoclinic.org/tes...n/about/pac-20384686

Anyone have this test?

By way of background, there are other reasons for me to be concerned about coronary artery disease and heart attack.  I am 60 years old and have had IBD for 51 years. My weight has increased to 218 pounds- I am significantly overweight (I should be no more than 175), and my blood pressures have hovered around 140/90. I have moderate sleep apnea, probably weight related. When I turned 50, my PCP ordered me to have a stress test and a complete cardiovascular workup.  At that time, I was told to keep the BP under 135/85 "or else", that meaning if I could not, I would be going on BP meds, something I have resisted despite my increasing BPs.  At my very last annual physical in July 2022, my PCP told me my cholesterol levels, for the first time, had dipped from "excellent" to just "good."

Personally tragedy also struck last year, in what should have been a harsher wakeup call for me.  My beloved first cousin, a decorated social worker in upstate New York, died of a sudden and massive heart attack at age 52 while home alone.  We were extremely close, communicated by text, and I was texting with him earlier on the night he died.  He was a much fitter man than I am- he ran track in college- although he did not eat very well (comfort food addict).  Unbeknownst to the family, he had been taking BP and cholesterol meds for quite some time.  This fact only became known when his condo was cleaned out after his death, and the pill bottles found.  I think about him often, partly because he was the happiest and most upbeat person in my extended family, but partly because I wonder if lifestyle changes, particularly his diet, might have made a difference for him.

I was wondering if anyone else has had the coronary calcium scan or has any experience to share as far as controlling the risk of coronary artery disease and the end coming via sudden and massive heart attack.

Last edited by CTBarrister
Original Post

Replies sorted oldest to newest

I have not had this test, but my nephew did.  He does not have IBD.  From what he said, it does a better job than the typical cholesterol testing that is done and can pinpoint issues with calcium buildup and determine if you may be more likely to experience heart issues.  Turns out his numbers were elevated and his doctor put him on a low dose statin.  He is also overweight and pre diabetic. He is trying to change eating habits and exercising as well.  He loves his comfort food.

I find it interesting about correlation between IBD and heart and stroke risks.  I do see a cardiologist yearly and will bring this up with him.  I am on the other side of the spectrum, low weight but pre diabetic.  Sucks!

CTB23, thanks for your input. Best wishes to your comfort food-loving nephew. My comfort-food loving late cousin would often text me and tell me he was celebrating national cheeseburger day, national pizza day, even national spare rib day, and send me detailed texts describing his celebrations. He always made me hungry. I made the mistake of telling him about Tillamook Ice Cream about 6-8 months before his fatal heart atrack.  He tried probably 10 of their flavors and sent me detailed reviews on each. He loved ice cream. I do too, but I have stopped. There is a fine balance between enjoying life, and having a life to enjoy.

One thing I should have mentioned about the Coronary Calcium Scan is that there is typically no insurance coverage for it. While that's the bad news, the good news is it's only costing me $100. Seems kind of cheap, and worth having if you are older and have had IBD for a while.

Last edited by CTBarrister

More information on this topic from the National Institute of Health:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4366573/

"Studies have shown that chronic systemic inflammation can lead to endothelial dysfunction and platelet aggregation, precursors in the development of atherosclerosis and coronary artery disease (CAD) . The weight of the evidence, mechanistically, biologically, and epidemiologically, support the notion that systemic inflammation, either induced experimentally or from what has been observed in chronic inflammatory diseases like rheumatoid arthritis or chronic kidney disease, is associated with a heightened state of cardiovascular risk.....IBD patients... are known to have a deregulated coagulation system. The intestinal microbiom could play an important role in promoting arterial disease. IBD patients have a disrupted mucosal barrier and therefore bacterial products that have translocated through the gut lining may enter the circulation and directly promote inflammation by activating immune cells and endothelial cells, known triggers in the onset or progression of cardiovascular disease."

Last edited by CTBarrister

My blood labs came back and the only 2 items notably out of normal range is my tryglycerides are high at 173, and my sodium is low at 133.  The high tryglycerides are due to my weight, which is excessive.  The low sodium, I believe, is due to having frequent BMs due to the J Pouch.  It is not THAT low.  Normal would be 135.

On the bright side, my PSA is 1.21.  The PSA has been consistently between 1.2 and 1.3 in the 10 years since I turned 50.  Good news, considering my Grandpa had prostate cancer and my father has had chronic prostate issues.

This is a great topic. There are more and more studies out there that are making a connection between inflammation and Cardiovascular disease. I have been following them not only because of my j-pouch and pouchitis, but also because I have a family history of cardiovascular / coronary artery disease. I have a high calcium score, take a statin and I am on a primarily pescatarian diet (my choice). I’m trying to do all I can to all I can, but some things you can’t fight, like genetics. Best I can do is stay on top of it.  

Results of my coronary calcium scan are back. Good news and maybe bad news scenario. The good news is that my calcium score was 0, and Dr. Q told me that to pitch a shutout on calcium at age 60 is very rare. He really liked that. However, the scan also picked up that my aorta is enlarged, for unknown reasons. Normal aorta is 4.0 cm, mine is around 4.4 cm. I had an echo cardiogram a few years ago that showed my aorta to be normal and not enlarged. So Dr. Q is ordering another echo cardiogram as he thinks that test might give a better reading on the aorta size.

Anyone here have an aorta that enlarged to 4.4 cm?

Hi @CTBarrister - I do not have an enlarged aorta, so cannot comment there, but I want to send congratulations on the Zero0 Zip Nada Ne Rien on your Coronary Calcium Score. I have had the test, everyone in my family has had the test, my friends have had the test - and our scores ranged from a low of 132 (me) to my friend scoring an alarming 2440. He is 73, a lifelong marathon runner and with that score he had to have triple bypass surgery.  So, well done on the Goose Egg, that's amazing, do celebrate that important element of good health.

Also, I am very sorry for the all too young loss of your cousin. Heart disease can be super sneaky, so well done you for continuing the diagnostic work with your cardiologist and my very best wishes to you.

@SeattleJane-

Thanks for your post.  Regarding the loss of my 52 year old cousin, I last night texted his younger 48 year old brother about my results.  My surviving cousin also had the coronary calcium scan (right after his brother died, because of extreme trepidation as well as the fact that he has kids about to enter college).  He also had scored a 0.  However, I was interested in finding out if the autopsy report showed if his brother, my cousin who passed, had an enlarged aorta at the time of his death.  He did not know the answer to that question.

I thought of my cousin who passed away all through this process. It's a more tragic situation than I can possibly describe, in large part because his death had significant ramifications for his family.  I miss him randomly texting me about a new ice cream he tried, or about a new cocktail he made and experimented with, or how he celebrated National Spare Rib Day, or what he thought about the latest baseball trade.  My quirky cousin used to do all those things, and it was because he had a zealous desire to celebrate life. There was not a person who did not know him or like him in the small college town where he grew up and lived in until he died, because he was that upbeat guy who always had a smile on his face.  This is why he was the perfect social worker for persons with intellectual disabilities, and why the State of NY recognized him for his excellence working with that population shortly before he died.

I intend to schedule the echocardiogram in the next few weeks and I will report back with the results.  My PCP said we will need to watch my aorta over time because at this time, there is no explanation for why it enlarged since my last echocardiogram.  But I guess the silver lining is that while my aorta is enlarged, we know it is not clogged.

Last edited by CTBarrister

@CTBarrister -- It's been a VERY long time since I've posted on this board, but I'd like to say hello and thanks for posting this important topic.  First of all, again, I'm sorry for your loss.

I've had my pouch since 2005 with no real issues (luckily).  However, I'm in your exact position -- an incidental finding on CT with contrast, done this past February for a totally different reason, found a 4.4-cm aneurysm in my ascending aorta.  I've also had an echo done after that CT, and then followed up with a cardiologist at a recognized Heart & Vascular Program at a teaching hospital.  During that visit, they mentioned that they use both imaging studies, but do "go by" the 4.4 cm measurement from the CT with contrast as my baseline, even though the echo used body surface area (BSA) to provide other numbers.  Also, as you mentioned in your post, I'll be followed up once a year with specialized CT imaging to see any further growth in the aneurysm.  If no growth during the next scan, then we'll move it to every 3 years.  If there is growth during the next scan, then they switch to an MRI every year so the radiation levels stay lower.

Lastly, as you also mentioned, the cardiologist is looking into whether this aneurysm has a correlation to my IBD, since it seemingly came out of nowhere.

Thanks again for bringing this to light, and good luck!

Kennymac,

Thanks for your post. I had my echocardiogram on 03/15/2024 and it confirmed what showed up on on the coronary calcium scan- my aorta has enlarged to 4.4 cm from 3.7 cm in October 2017. Therefore it has enlarged .7 cm or almost 20% in 6.5 years.

Interestingly, although I consumed large amounts of Cipro from 1995 to 2015, after I went on Remicade in 2015, not so much. And really not much at all since my aorta was a normal 3.7 cm in 2017.

Although my IBD was discussed, the real culprits seem to be high blood pressure and weight gain. My cardiologist told me HBP is very dangerous with an enlarged aorta. So I am taking 50 mg losartan to get the BP under control.

My cardiologist also noted my consistent low sodium. Normal sodium range is 135-145 and I consistently run 131-132 on sodium. So he is not restricting sodium in my diet. I think one reason for the low sodium is no colon and frequency of BMs with a J Pouch.

Since I posted in February, I also lost my father to a heart attack. He was 86. He had suffered from IBS and diverticulitis which they found on a scope last summer, but he was otherwise healthy. Dad was in the hospital from February 13 to February 27. A blood test confirmed the heart attack and an echo in the ER confirmed he had 2 blockages. The one that likely caused the heart attack was in his right coronary artery. They also identified what looked like an "ulcerated and weakened area" of his aorta. They wanted to do an MRA on the aorta.

However, after he had a cardiac catheterization to address the RCA blockage, on February 14, he had 2 significant complications: (1) a kidney injury from the contrast that spiked his creatinine over 8, resulting in dialysis over the next 2 weeks, and (2) internal bleeding, resulting in a number of blood transfusions after he got out of intensive care.

An endoscopy 4 days before he died identified a duodenal ulcer, which was suspected to be the source of the bleeding. However, after it was cauterized, he continued losing blood. His blood pressures were dropping and they eventually sent him back to ICU where they put a port in his neck for more blood transfusions. However, due to internal abdominal bleeding he eventually went into shock and died on February 27.

I suspect it was his aorta that was bleeding. He never recovered from the kidney insult sufficiently for them to do an MRA which they had wanted to do from day 1. They obviously saw something on the echo they didn't like. But we will never know for sure.

My father's father also died of internal abdominal bleeding, although at age 89 and not after a cardiac catheterization. He had colon cancer. So I am very aware of the genetic component involved and the likelihood that the enlarged aorta situation is dangerous.

The good news is that my cardiologist said as long as we get BP under control, I can live with an enlarged aorta and we will just have to monitor. Every year. If it gets to 5.0 cm it's a surgical situation and nobody wants to have that surgery. So far, losartan has dropped my BPs but not to 120/80 consistently. I am usually in that range in the morning but at night I am 135/90. So I am eating more vegetarian meals and trying to get more exercise.

Last edited by CTBarrister
@Scott F posted:

That would have missed anything in the ascending aorta, unfortunately.

It's my ascending aorta that is enlarged. This was picked up as an incidental finding on the coronary calcium scan as mentioned previously. I recommend that anyone with IBD, or high blood pressure and over the age of 50, have one. It cost me $85. Insurance didn't cover, but to pay $85-$150 for a test that could save your life or at least alert you to your exposure to an life threatening aortic dissection, is well worth it.

Last edited by CTBarrister

Thanks Rose. It's extremely difficult to lose a parent, especially one who was your best friend, mentor, and next door neighbor, and someone you did things with socially, like go out for beer and pizza with other friends, and weekend day trips. The aftermath- dealing with funeral arrangements, bills of the parent, cleaning out his condo, selling his car, and other Estate issues, is not easy either. I have gotten through most of it, but it's really, really time consuming and energy draining.

During my father's final 15 days in the hospital after his heart attack, I saw him every day, and one of the issues that bothered him was that he had two major blockages, yet he told me his LDL and HDL cholesterol tests had always come back at good levels, and his blood pressures, with medication, were well under control and at normal levels. A cardiologist at the hospital told us that this doesn't insure one to have clog free arteries, and the buildup of plaque or residues that creates these blockages happens slowly over the course of time.

My father was 86, and lived a pretty clean life. He was not a drinker or smoker, although his diet was a bit heavy on carbs, and I often talked to him about that. In particular he ate lots of bread (some of which he made himself). He had a lifelong love affair with bread. I believe this started when he worked in a family-owned bakery as a very young man, and actually made bread. When I cleaned out his freezer I was again reminded of his long time practice of freezing bread, like rye, pumpernickel, ciabatta, etc. which he would use for toast at all times of the day. He had around 6 frozen breads in his freezer at the time of his death.

I miss him a lot, and today being Sunday, which was the day we always had dinner together at my condo, I am sure I will be thinking of him later. I am making one of his favorite Sunday meals, a lamb chop cooked on the grill, with creamed spinach. Despite eating this meal, since I have been talked to by my cardiologist about my own diet in April, I have been eating less red meat, and a lot less meat generally. And more vegetables and seafood.

Last edited by CTBarrister

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×