Worried about going under... - Hughes Syndrome A...

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Worried about going under...

Crogers profile image
20 Replies

Hi everyone, I'm due for a colonoscopy on Monday and are freaking out. Just to give you a little back story... I've had Crohn's disease since 1999. I've had probably like 4 colonoscopy's since my diagnosis but not one since I've tested positive for anticardiolipin antibodies. I keep thinking I'm going to have a clot burst and never wake up. I know I'm being silly but I can't help but worry.

Any advice?

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Crogers profile image
Crogers
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20 Replies
Ozchick profile image
Ozchick

If you've had one before you will know the prep is the worst thing about it! I'm due another one in the next few weeks so let me know how you go. It's a pretty short sedation and I guess you've spoken to your doctor about your fears and whether you need to change your coagulation?

TJSTICKYBLOOD profile image
TJSTICKYBLOOD

I've had many of these pre and post diagnosis. If your on warfarin they normally stop a few days before and put you on clexane. Try not to worry the only difference for me was injecting the few days before the procedure. The prep and procedure is the same

MaryF profile image
MaryFAdministrator

Wishing you the best of luck, do talk to your medical team regarding how you feel, they are there to help. Let us know how you go.

MaryF

Lure2 profile image
Lure2

Hi Crogers,

I have read that you do not have an APS-Specialist yet and that you live in the Boston-area.

I can only hope you will find that Specialist so your neurological symptoms will be better with proper anticoagulation. You have the anitbodies but no "event". You should not have to wait to have a clot or stroke. Look for a Rheumatologist or a Hematologist as the Neurolgists (you have had one) do not "get" that we have too thick blood.

I am sure your Coloscopi will be ok. I have had one years ago.... Tell them about your antibodies if they do not know about them.

Best wishes from Kerstin in Stockholm

Lure2 profile image
Lure2

Crogers ....... please let us hear how it goes for you and stay on here.

Best of luck from Kerstin

T_wellbeing profile image
T_wellbeing

Hi Crogers!

Sending you good vibes for your colonoscopy. I have been living with a chronic DVT for over 2 years now and am permanently anti-coagulated -on Xarelto (rivaroxaban). I've had many colonscopies in my 42 years and yes, the prep is definitely the worst part. I've had IBD (inflammatory Bowel Disease) for 5 years and have just recently been diagnosed with peri-anal Chron's. I've had one colonoscopy since being anticoagulated, and with my haematologist and colorectal surgeon came up with the plan to have my last dose of xarelto 72 hrs before the colonoscopy and shift to injecting clexane the 2 mornings before, and then as soon as is deemed safe afterwards, eventually transitioning back to xarelto for anticoagulation. (I had surgery subsequently so it was 10 days before the shift back).

All went well, and I'm sure it will for you.

Cheers to wellbeing!

Manofmendip profile image
Manofmendip

Hi there.

I've had several colonoscopies since I was diagnosed with APS. :)

Dave

justlymostly profile image
justlymostly

Hi

I've had three with no problems and in a way it's better because you get results as soon as you wake so no waiting and worrying.

I have Aps, heart condition and am on warfarin so have to make sure INR is low enough which is more hassle than the colonoscopy itself.

On a lighter note, don't forget your Vaseline bung when taking the yuk drink they give you before, makes things much more comfortable Lol

Kind regards

Crogers profile image
Crogers

Thank you all for the replies. Yes the prep is the WORST! I'm hungry already lol

I'll you guys know how it goes. Keep you fingers crossed for me. I became severely iron deficient and had to have an IV iron infusion back in July so this one freaks me out. Anyone else have similar issues with iron and absorption issues?

With regard to the APS, I have an appt at Tufts in Boston in December. That was the earliest appt I could get, but I made sure to get a Dr who specializes in clotting disorders. Hoping she can help me.

Christina

tim47 profile image
tim47 in reply to Crogers

Yes. Seems like I have had low ferratin levels on rather more occasions that was realised. Tablets don't agree with me, trying sytron liquid but that isn't without its problems. Thinking IV may be next.

tim47 profile image
tim47

Hi Crogers. I have had APS for donkey's years and was booked for both ends earlier in the year. I too got very worried as they didn't understand Hughes very well, but we eventually agreed bridging coagulation and full anaesthetic. I have had to do the bridging before for various reasons so I know how it goes and they agree with what was proposed.

All went well . Have to go back in a few years for repeat, no longer particularly worried by the prospect.

The concern is understandable, but I'm sure your people will be every bit as professional and caring as mine were.

Best wishes.

Tim

Bacardibabe76 profile image
Bacardibabe76

Hi Crogers

I totally understand where you are coming from. I am recently diagnosed APS and when I was supposed to have a laproscopy in June, I told the nurse at the pre op assessment about the APS but she didn't seem to understand and said the consultant will talk to me before the surgery. Anyway I turned up a week later only for the anaesthetic doc to say no, they were comfortable with it as nothing had been done.

Here I am a few months later and I'm awaiting a hemithyroidectomy on Wednesday. I am really concerned about it all even though I'm having Heparin from yesterday till tomorrow in preparation.

I really hope all goes well xx

GinaD profile image
GinaD

I had a hip replacement in 2013 and i did fine. I assume you are bridging , but if not, still, the doc should be on the alert for a clot and will remain ready withhe anticoagulents. Tell us how it goes.

Crogers profile image
Crogers

What is bridging? I've only been on baby asprin which I had to stop 10 days ago.

Bacardibabe76 profile image
Bacardibabe76 in reply to Crogers

When patients on anticoagulation require surgery or an invasive procedure, the risks and benefits of stopping or continuing anticoagulation must be considered. In many cases it is necessary to stop the oral anticoagulant (most commonly warfarin) and replace it with low molecular weight heparin (LMWH) until after the procedure. This is known as “bridging anticoagulation”.

Holley profile image
Holley

I too have APS and have had a colonoscopy without incident. As previously mentioned, the prep is the worst! My only complication last time was our fridge broke and I had to distribute my jello to various neighbors' fridges :)

shardavis3 profile image
shardavis3

I just did the same thing last week. No problem! The anticoagulant clinic had me start on lovenox five days before then after resumed my Coumadin with Lovenox for five days. Then test. I was low so they asked me to take six then resume my regular four tablets. Easy,Peesy!

shardavis3 profile image
shardavis3

I do have a question about the injection sites of Lovenox. I injected in my tummy. Every site that I injected has a big hard lump. Of course my tummy is black and blue, I expected that, but the lumps are very sore. Is this normal?

Bacardibabe76 profile image
Bacardibabe76

How did you get on Crogers? 😀

Crogers profile image
Crogers

Hi all 😄

Just wanted to give you guys an update. So my procedure went well. The prep totally stinks...that stuff is sooooo nasty!!! A necessary evil I guess.

The upper endo was normal. The colonoscopy showed two small ulcers and mild inflamation. Consistent with Crohn's 😔 My GI biopsied two areas and I should know more by next week.

Thank you to all who replied to me to ease my fears. You all really helped!!!

The best part of my procedure being over is now I can go back on baby asprin. Wooohoo!!! Those two weeks being off were the worst.

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