IBD and blood clots

Hi, I think it's mostly a problem with active inflammation and messed up blood levels. I have my blood levels checked regularly about 4...6 times a year.

With active inflammation I always had increased levels of blood plates. Since I could reduce inflammation largely thanks to antibiotics that level has normalized and also my iron levels are sufficient so I don't need iron infusions any more.

Besides, the more common problem with blood clots is not death but thrombosis (which can be treated with blood thinner if it happens).

Hi,

It seems your UC situation was similar to mine. Diagnosed with UC and had one terrible flare up that resulted in JPouch surgery. Prior to the surgey, I was on mesalamine, prednisone and tried remicade. These meds weren't working. While on these meds/flaring up, I developed a DVT in my leg that seemingly formed overnight. I rushed to the hospital and the vascular surgeon took only a part of the clot out - from my understanding, it's unusual for them to always remove the full clot. Since then, I've been on blood thinners as a prophylaxis. The clot is dormant but I feel comfortable taking the medication as I haven't experienced significant side effects. I have not had any more problems with the clot as of now. My GI doctor and colon surgeon both agreed that the clot was likely due to active inflammation and lack of movement (I was so fatigued during the flare up, I didn't move around much). Interestingly, the hematologist ran blood tests, and I had a slight genetic predisposition to a clotting disorder. It wasn't anything of concern, but was something to keep in mind. Once a year I get a doppler scan of my leg to monitor the blood clot.

Hi, BK—thanks for sharing!

From what I have read about this, the genetic predisposition you mention may matter just as much as the IBD flaring. And autoimmune disorders like IBD don’t always travel solo… I’m going to be worked up for lupus at some point, I think, and I know that one increases the risk significantly. So I’m glad they have you on an anticoagulant for safety, and are keeping an eye on things for you, especially since that happened before.

So far, I have a genetically inherited platelet abnormality that makes it more likely for me to bleed (like being on a baby aspirin or ibuprofen), so I bruise easily and get nosebleeds when the humidity drops. I had no clot issues despite 8 months in an uncontrolled flare right at diagnosis, prednisone and remicade, extreme fatigue and limited mobility during that time, sepsis and pelvic abscess after my colectomy/pouch surgeries (which all came with inflammatory thrombocytosis—platelet count elevation). Chronic pouch leak for 18 mos w peritonitis the whole time, a few years later, and still no clot. All those surgeries, being bedridden for a while, still no clot.

It’s not impossible for one to happen, of course, but I’m beginning to think it unlikely in my case at this point, when all those known stressors/inflammatory episodes with low mobility didn’t cause any. My GI doc agrees, so that’s good, but I thought it was an interesting thing that no one had brought it up with me until recently, and wanted to know if others have had different experiences.

Thanks again for sharing!

Wow, you've been through the ringer my friend. Bless up! Our bodies are truly interesting and it's so wild to me just how harmful and extensive inflammation is. I remember being so confused and then once my docs said that the underlying inflammation could trigger clotting, it totally made sense to me. 

I’m glad to see this addressed. I got a clots during a flare. My gi saved my life. I was walking around for 2 weeks thinking I hurt a muscle in my leg. I called gi and explained systems and he said go to er. This was 2000. Doppler done n tech said don’t get off the table- she said they are traveling! Kept a week which now is unheard of. Then in 2001 had colectomy - went bad- then had 2nd surgery with temp ileo. I told surgeons my blood clot- nope no preventative treatment. 2 weeks later my leg was purple. Now I’m the hospital for 2 weeks. They put in green field filter- hopefully spelled correctly.  But I don’t remember what doctors said.  Then got superficial clot in 2014. I went to a fantastic hematologist to figure myself out. UC patients can have thicker blood. Didn’t know that for 25 years. They did very expensive testing, I’m not predisposed or have something that is hereditary. I needed to be cleared for rotator cuff surgery- not fun either. But it took long time for me to know about clots and I was told UC has more propensity for diabetes, which I got that too. We all deal with ALOT!

My goodness, @trish1968! You’re a serious survivor!!!

Back in 2000, they had to keep you that long to stabilize the coumadin. Thank goodness the blood thinners are easier now, though they cost an arm and a leg… and now everybody gets the stockings and the calf squeezers and the Lovenox shots. (I bled after my 2018 surgery because of those darn shots, had to tell them I didn’t want them anymore. That gave everyone fits. But the stockings and the SCDs (mechanical calf squeezers) work unless you’re super high risk.

I’m so glad you have survived all of this, and saw a hematologist, too—nobody seems to think to send us to them. I sent myself, before my big revision surgeries a few years back, because nobody listened when I told them about bleeding easily from genetic causes—with a specific identifiable cause, they can’t ignore it as easily. And it’s a mess when they ignore it during a big procedure…

But mine didn’t seem to know of (or at least mention) any link to UC for the clotting risk. When I look it up, it seems well known. Hopefully more patients are aware of that risk than I ever was… my new gyn was the one who brought it up, so I had to do my own research, ask my GI, etc. to figure out if I should even worry or not now. Nobody wants one more doctor, I think, but when people get really specialized, they tend to neglect the bigger picture.

And you’re the first person to tell me UC has a higher risk of diabetes. Now I’ll have to research that for myself, too! We have it in the family, so I just assumed I’d get it, but my uncle (a general surgeon) told me I’d never get diabetes after having colectomy. I think he meant I’d lose so much weight or something, which hasn’t been true.

The diabetes risk, just like the clotting risk, can be multifactorial—steroids and maybe even some of the biologics can lead to diabetes. Hard to know what comes from the disease vs the treatment; post pouch, I’d guess the risk goes down because technically the UC has been cured (if you had complete excision, no residual rectal cuff). And that also means no more steroids or biologics.

Thanks for giving me something new to think about!

This is an interesting thread. I am taking Remicade to control inflammation and was never advised of any blood clot risk per se from Remicade although I was warned about other risks. But the chief precursor of blood clots in many cases is dehydration, and because we as J Pouchers are always needing to maintain tip top Hydration due to having no colon, I am not surprised by the risk factor.

As an attorney who frequently handles personal injury cases I have had some DVT cases over the years and 2 that I can recall were the result of long distance air travel. To the poster who had the DVT (BK) I would suggest any air travel would be extremely dangerous in your condition. The two cases I handled involved very long trips- one was a flight from USA to South Africa and the other from USA to Saudi Arabia. In both cases the persons involved were hospitalized with severe pain and life threatening complications (pulmonary embolisms) but survived due to surgery and blood thinners. One had lingering complications that lasted for years. I am aware of one other case that I was not involved in, which involved a fatal injury that resulted from a DVT that matriculated into a pulmonary embolism during and after a flight from Japan to NYC. The litigation was over whether it was an accidental injury for purposes of life insurance proceeds to the deceased's family. That person was DOA to a hospital after being stretchered off the flight.

Most of the airlines do not really give much information to passengers on the risks of DVT due to air travel, nor do they tell you to get up and exercise during a long distance flight or at least move your extremities. They also don't tell you not to drink alcohol and the chief risk of blood clots is the big D- dehydration. You are already getting dehydrated in an airplane due to the dry air and when you couple that with the pressure change, drinking of alcohol and no exercise (or worse yet sleeping after drinking), it's a recipe for blood clots to develop. We J Pouchers are already prone to dehydration so BK, I would avoid any air travel if I were you.

BTW I know someone who has a genetic clotting disorder in his family and one of his close relatives died of a pulmonary embolism flying NY to San Francisco. My friend is scared to fly anywhere and travels by car only.

BTW Another risk factor on clots is birth control. An ex gf of mine had DVT after going on birth control to control virulent menstrual episodes and she ended up with a virulent blood clot, hospitalization and weeks of recovery.Her doctor told her no more birth control so she switched to marijuana. Women who wear panty hose or anything that restricts circulation in the legs, were big risks on airline flights and many DVT cases were documented from this group per a study by British Medical Journal the Lancet.

Hi Athena

I dont want to add worry to you about Diabetes. I have no one in my family with it,- after all my gastro surgeries from 2001 to 2004- i leveled off and gained weight it seemed quickly with not alot of food- until 2006 time- alot of stress with work and ex-husband( alcoholic- who I blamed myself bc I was sick- I know- he was one before me). But I was 125 in 2002- at my worst health- by 2007 i was 237- and i am 5'4. I was eating alot of bad stuff- but i never drank- didnt like it. But i went to doc and was told i was type 2- i cried and imagined horrible things- but my A1C was in the high 6 range. I was a good patient, I cut out sugar- watched carbs and started to exercise.  I took Metformin- still do- which can upset the stomach, well I figured it out. Then my life imploded with marriage- and didnt eat- for months. but by 2010- got back to exercise and lost 100 pounds in 2 years. My A1C was 5.4. I felt great- well as good as I could. I am still careful. In 2011 i developed motility issue and my food choices changed- so my diet got more strict. Then my other hurdle is gastroparesis. Which I was told can happen more to diabetics! its like a big circle. I got a bad stomach bug and got horribly ill for 2 days and damaged my vagus nerve- think that is the spelling. That was 2020-early. I lost 35 pounds- my A1C is really good. but my food options are so limited.  I think we all have to be our own advocates. I carry my medical resume with me. I dont want the wrong meds or anything. And I want them to see clots, diabetes, etc.  I do like to see the looks on some new docs face at what i have and what surgeries i have done- or weird diseases or issues, they get a look of "wow- i better not mess her up more" or they run- lol... Lucky I an near NYC but some great docs in Northern NJ.  We are all warriors.

@trish1968: Wow. Again, I’m amazed at what you’ve been through and come out the other side of. It just goes to show you that this isn’t an easy path; there is another thread where someone is just so frustrated with his course that he was thinking he should give up, and I really felt for him, but I feel like enough of us have seen bad days and come through them that it’s worth carrying on.

With my staged revision, I had a jejunal resection for massive scarring from chronic peritonitis that went undiagnosed for well over a year, and took 18 months to get to surgery. When he had to do the high ileal ostomy at the same time, leaving room below to make a second pouch, I malabsorbed food so badly for 10 mos (whatever I ate would pass right into the bag within 90 mins) that I was worried I was going to cannibalize all my muscle and not be able to heal my surgical wounds. (I lost a lot of muscle then, but I started protein shakes and weight training on my own, just trying to stave that off somewhat. It was scary how weak I was.) But as soon as the ostomy came down and I got 2 feet of ileal length back, I started gaining weight uncontrollably. It has been horrible. I just gained weight every day without fail, even on limited calories, and couldn’t stop until I was far heavier than I wanted to be. And this time, it’s not muscle!!! But my A1c is still normal, shockingly—we have DM on both sides of the family, pervasively. To the extent where we all assume we’ll get it. So now I’m wondering if my extensive jejunal resection is delaying that somehow… and I’m trying to reset my metabolism to a better level, but it’s an ongoing struggle.

@CTBarrister: I thought DVT from air travel was commonly known about now, especially for longer flights. But airlines certainly cram us in like sardines, and restrict the ability to move around the cabin far too much (which I hate most for restricting restroom access), so it’s inevitable. And when they stopped serving beverages, well…

Interestingly, as a poucher, I don’t hydrate when flying anymore. I used to be aggressive about it d/t dehydration risk, but then my ankles and feet would swell so much I couldn’t wear my shoes. (Edema, not blood clots.) Even with the hated compression stockings. No one seems to understand why; it started after my big revision pouch surgery, and I think they had to have damaged the pelvic lymphatics, but that’s understandable given the mess that was in there. Now I drink caffeine when traveling, as a means of regulating that edema—long car rides are risky, too, not just flights, for anyone with propensity to DVT or swelling for other reasons. It was the only way to keep the swelling from happening, as I found over time; otherwise I avoid caffeine like we’re all supposed to. I don’t think dehydration is a significant contributor to clots unless it’s profound, and by then we’d be symptomatic in other, more obvious ways anyway…

The three big things that predispose to blood clots, Virchow’s classic triad, are stasis, hypercoagulable state, and endothelial injury. The third is unlikely from travel, is more likely with surgery. The first one is the travel bit—sitting and not moving, whether car/bus/train/plane—but calf pumps and ankle rolls and all that can help, as can getting up and walking around. The middle one is the one that is the least predictable, though, and the one that conveys the most risk of all of them. I agree that BK is at more risk w long air travel—but not significantly so if well-managed on blood thinners, and car rides can be just as bad—and they take longer, too. So it’s probably a lot to say don’t fly. It’s more practical, perhaps, to say take shorter flights/not nonstops for long distances, get up and walk, do calf pumps, basically—pay attention. But the blood thinner manages the hypercoagulable state, which is the biggest risk.

My new gyn was concerned about the OCPs I use to manage ugly inflammatory period pain, since I can’t have ibuprofen anymore d/t history of pouchitis on it. I’ve never had that with the new pouch, but my GI thinks it’s not worth the risk of trying ibuprofen again. The OCP I use has low dose estrogen and drospirenone, which mimics aldosterone and helps the kidneys retain potassium—I feel as though it has helped a lot with electrolyte balance, so I don’t want to give it up. New gyn wants me to, precisely for clot risk! That’s what prompted me to do some digging. But I’ve been on this one for 11 years, was put on after I developed UC, over the age of 35, just to help with my electrolytes while controlling the other stuff. I even seasonally cycle—don’t take a break except 4x a year, to have fewer periods, since they’re miserable—and have been through all the crazy surgeries and infections and periods of profound debilitation during that time. So far, no clot. I kind of think that’s a good enough litmus test of my risk, esp with my mild platelet abnormality that promotes bleeding; my GI thankfully agrees, says I can keep my OCPs! (Phew.) I figure it won’t be an issue in a few years anyway, but for now, it really is one. (Prior chronic pelvic infection from leaking pouch for 18 mos means brutally painful periods now. I could barely see straight, much less take care of patients, when it hurt like that. Seasonal cycling is a lifesaver.) Now I have to worry about being obese adding risk, though. I didn’t have that risk during all the surgery/chronic illness.

As an aside, for me, the worst thing about flying is the lack of bathroom access! I’ve been on a flight where the bathrooms didn’t work and they didn’t tell us til we were taxiing. It’s ridiculous and against the law, from what I understand. And I hate how, in the main cabin, they get all shirty with you for lining up for restroom access. But if you don’t get in line, you never get to go—and I don’t have enough control now to wait, after the revision. I’ve flown Southwest when I could, and paid for early boarding to get an aisle seat near the front restroom, but even then, I was disappointed to be treated very rudely by the flight attendants on one flight, and not allowed to use the front restroom—which is ridiculous, since they don’t have a designated area for business class or anything like that. I guess this is why I need a Twitter account—to shame businesses into doing better. (;

Anyway, all interesting points, and I appreciate your sharing! So much to think about, and there’s always something I could be doing better, I know. I think the fact that this is a ‘hidden disability’ is a big pain; I don’t like explaining my business to everyone on the plane to make them understand why I need to do what I need to do. But then people can be rude and unhelpful, and deny restroom access. Another challenge…

This thread has been really insightful! Makes sense that flying could lead to  possibility of clotting up, especially due to lack of movement. I take 10mg of Xarelto everyday which seems to work well. I work in high finance (sounds way more interesting than it is - just another desk job!) so I'm sitting for 90% of my day. My hematologist never mentioned risk with air travel but I'll for sure ask them, as well as Dr. Shen and my surgeon.

I've learned so much from this tight-knit group, appreciate and understand you all!

@athena posted:

@CTBarrister: I thought DVT from air travel was commonly known about now, especially for longer flights. But airlines certainly cram us in like sardines, and restrict the ability to move around the cabin far too much (which I hate most for restricting restroom access), so it’s inevitable. And when they stopped serving beverages, well…

The risks are not commonly known due to anything that the airlines are doing as far as advising travelers to hydrate and exercise during flights. During my research which included some medical journal articles I reviewed, there seemed to be a belief that avoidance of inertia/stasis during long distance flights- even by stretching arms and legs, flexing or shaking them, would help promote blood circulation and reduce the risk of clotting. While some of this may be common sense, there is a large segment of the population that doesn't think about such things when they fly. And the airlines don't mention any of this, they just focus on what to do if there is an issue with the flight. In fact, many people are stressed out by flying (including me) and alleviate that by drinking or taking sedatives before and during flights, which of course leads to sleepiness and inertia. Alcohol consumption, sleeping/napping  and/or poor hydration was involved in all of the DVT cases I mentioned above. When these things happen it creates a perfect storm of risk factors and clotting - for someone prone to it - could be an inevitable result. And obviously if you clot up when your flight is over the Atlantic Ocean with no airport within hours, you are in deep shit because you can't get to an emergency room. This is what happened in one of the cases I mentioned. The client was very lucky that the clot developed towards the end of a long flight and he began to feel pain before landing. He went straight to the hospital after landing and got to the ER just in time. The guy who flew from Japan to the USA wasn't as lucky. I think that guy was only around 50 years old.

Long distance car travel can present some of the same issues but at least you are free to stop the car, walk around, and drink water as needed a lot more freely.

I had a thrombosis of the legs for 3 times in the past. The first time was when I had bowel's cancer after 9 years of UC, it was the trigger why they found that cancer early enough and right before my J-pouch surgery. Both other times were at the end of hospital stays.

Immobilization is clearly a high risk for blood clots. The last time I had to stay in hospital I told them to give me preventive injections of blood thinners.