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Crohn's Disease Forum » Your Story » Waiting for Colonoscopy - anyone else with blood clots?


04-14-2014, 09:39 AM   #1
Wildmtnhoney
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Waiting for Colonoscopy - anyone else with blood clots?

Hiya!

synopsis: 37 yo female. I'm not yet diagnosed, Crohn's is just "hinted at" at this point, based on symptoms, and the colonoscopy is coming in just 3 days (eek!). I have had one DVT in my lower left leg, and read that hypercoagulbility can come with Crohn's - has anyone else experienced this?

long version: In October of 2012, after dealing with what I thought was a never ending charlie horse in my left calf, I was diagnosed with a deep vein thrombosis (DVT). I was found to have one copy of a gene called Factor V Leiden, that makes you more prone to clots, started on warfarin, and told that I would be on it for life as I had had no other factors contributing to the formation of the clot.

Since then, I've suffered with chest pain off and on, which has been determined to "likely" be a combination of muscular issues and reflux, as my heart looks great and they haven't seen a pulmonary embolism (blood clot in the lungs) on any CTs.

Then the tummy trouble started in Dec of last year. I had severe pain in my lower right tummy area, and my husband took me to the ED, where they did an oral and IV contrast CT scan that showed my appendix was fine, but I had a very inflamed and partially burst cecal diverticulum (diverticulitis is the disease name). I was in the hospital for a couple days on IV antibiotics, but no surgery, then sent home on oral augmentin. I had D all through the augmentin treatment, but after it ended, the D got much worse, and 2 days later, I spiked a fever of 102. Back to the ED, where a stool sample showed I had contracted C-Diff. Another 4 days in the hospital as I was terribly ill with that, then finally home on oral Flagyl.

Amazingly, I was "well," with normal bowel movements, for quite a few weeks! Then the D started up again. I cried, believing the C-Diff was back. This time I just went to my GP, who ordered a ton of blood and stool samples, but surprising everything came back fine! No C-diff, no nothing in the stool. And my blood work looked good too. Then I got dehydrated from all the D (it's hard to keep up with!) so off to ED for a couple of liters via IV, where they ordered MORE stool samples, more bloods...again, everything was great! Follow up with GP and she sent me straight to a GI.

GI went over all my tests so far, and ordered a few more, including celiacs, and fecal calprotecin. Celiacs came back a definite negative, and calprotecin levels were within the "normal" range, but he still feels there may "some sort of inflammation process" going on, hence the colonoscopy.

I have now had D for about 6 weeks. Well, yesterday I had a nearly normal stool and I thought "maybe I've been making all this up! maybe this nothing!" Ha! The pain was back last night and the D is back this morning, dang it all.

All of that to ask, while the lovely Lovenox burns my belly (it is the short acting blood thinner I have to use instead of warfarin leading up to the colonoscopy, it is an injection in your belly and it stings!) Has anyone else had blood clots as part of their history?

TIA!!
04-14-2014, 10:15 PM   #2
Tuff
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Hi Wildmtnhoney and welcome to the forum. I was diagnosed with Crohn's after I almost died from pulmonary embolisms. The doctors said I'm lucky I'm still here. My GI says that DVT's and Crohn's seem to go together. I'm going to the hospital tomorrow to learn how to inject myself with Lovenox too, in preparation for a colonoscopy next week. 4 liters of Peglyte, I just have such a hard time drinking that stuff, I'm worrying about it already.
__________________
Inflammatory bowel disease may more than double the risk of a serious blood clot in the legs or lungs.
************************************************** ********************************************

Stelara, Warfarin, calcium, Vitamins B12, D.
Previously: 5-Asa, Cipro, Flagyl, Prednisone, Aza, Remicade.
Pulmonary Embolism, DVT's, osteopenia, Peripheral neuropathy.
04-15-2014, 08:24 AM   #3
Wildmtnhoney
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Hiya Tuff!

I'm so sorry to hear about your PEs, that is so scary!

I'm also sorry I mentioned the "sting" of Lovenox, as I don't want to scare anyone but forewarned is forearmed, right? In my experience with it, giving the shots is not a big deal at all, but the sting, sort of like a bee sting/burn, comes a few seconds AFTER I have removed the needle and put away the syringe, but doesn't last too long, just long enough to be annoying. I have also noticed that if I am careful, and inject slowly, I don't bruise much or at all. Some people use ice packs to numb the area before injecting, but I haven't needed to do that yet. I am sure you'll do fine!

Thanks for your input re Crohn's and clots - not what I "wanted" to hear, obviously, but it's good information to have.
04-15-2014, 10:14 AM   #4
Tuff
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Thanks for the info. It's not the pain that is bothering me, but the thought of having to stick a needle in my stomach. When I get an injection, I always look away. Well, I'm not going to be able to do that this time, heh. Have you had a colonoscopy before? I find the prep really hard to drink, there's so much of it.
04-15-2014, 10:43 AM   #5
Wildmtnhoney
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This will be my first colonoscopy! I'm a bit freaking out now -- I am eating my last "real" meal for breakfast, then starting liquids early today so the prep will hopefully go quickly tomorrow.

I have been given MoviPrep, and haven't heard great things about the taste, but I figure it's worth it, so I'll get through it.

At least my procedure is early in the AM on Thursday, so I'll have the rest of the day to recover, and my husband has Good Friday off as well, so we're looking forward to some quiet time with the kids just chilling around the house (finger crossed).
04-15-2014, 10:55 AM   #6
Tuff
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I've had one before, and don't remember anything at all. I was out like a light. The prep is really important, so that you'll be emptied out and they can see inside. I wouldn't eat a heavy meal afterwards, just try something light at first, and see how your bowels feel.
04-16-2014, 08:10 AM   #7
Wildmtnhoney
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Thanks, I'll remember to take it easy afterwards tomorrow.

Warning, whining ahead:

I am so upset with my body! I only ate a light breakfast yesterday, then started liquids early to help with the prep today, yet I was *still* woken at 1am, and 4am, and then for good at 6am with severe D. I want to know WHY this keeps happening to me! I am tired and sick and sick of being tired and sick. I guess this is "good" in a way, because I was in a bit of denial about needing the colonoscopy. Now I just hope they find something, some sort of diagnosis. Of course I also keep hoping it's "no big deal". Sigh.
04-17-2014, 12:44 PM   #8
Wildmtnhoney
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It went well, as far as these things go, I think. No signs of inflammation. Still waiting on pathology to rule out microscopic colitis though, as he took "a lot" of biopsies.

Only odd thing, report doesn't mention my cecal diverticulum. I have a pic of my appendix opening, and it should be right there per CT, but no sign of it? Guess it's a question for next week.
04-18-2014, 09:18 AM   #9
Tuff
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I hope they get some answers for you soon. And some good news.
I did my first injection of Lovenox this morning, it does sting a bit. Never thought I'd be sticking needles in my belly.
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