Not enjoying coumadin

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blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 5/10/2011 8:51 PM (GMT -6)   
A little rant, if I may indulge. Every single time I've had a CT scan, I've ended up treated and/or tested for something they found that they weren't looking for, and that wasn't clearly an issue. This time, it's a blood clot in my hepatic vein that they found along with the abscess they were looking for. Either a huge lucky break or (more likely) something that would have gone away on its own. So now I am 2 months into my 6 month coumadin course, being cautious like a good patient.

It makes my period so, so heavy, makes me not even want to leave the house, but I have to. And plus, my butt wound is still draining/bleeding/healing, so it's like I have a period at both ends. Can I whine for a minute and say I HATE THIS? I still can't even sit right, and I have too much blood coming out of me, plus cramps.

OK, I'll be a grown up now..... I've certainly dealt with worse, and it's good that my docs are cautious ..........(but I still hate it). Sigh.

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 5/10/2011 8:59 PM (GMT -6)   
So sorry blue that you now have another thing to deal with. Hope the next 4 months fly by for you.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

villager
Regular Member


Date Joined Aug 2010
Total Posts : 130
   Posted 5/11/2011 2:13 AM (GMT -6)   
that was a nice little rant Blueglass - short, to the point & clear as a bell - i hope it has made you feel a little better - funnily on reading it i feel myself that i've actually gotten something off my chest - thanks for that !! - we all need to dump the rational adult approach from time to time & let fly

like yourself i had a clot on my portal vein ( ?? same thing) & was on heparin injections twice a day for a month - happily the scan at the end of the course was clear - the nurse offered to have a browse around & look at other bits (spleen, kidneys, etc ) while i was there anyway, just in case - i politely declined her kind offer as i was only 4 weeks post perm ileo op & i had enough goin on without 'extras' - i figured that if there was anything other major they would have found it while I had had a go on all the other machines in the hosp over the previous year

i hope you do feel better & that the butt wound hurries along to heal - ? are you taking a good protein supplement

cheers
UC since 1990, not a lot of fun
Qualified as ileostomate May 2010, a much happier boy now
panproctocolectomy, abdomino perineal resection, perm ileostomy
my colon may not be, but my heart is in the right place !!

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 5/11/2011 5:34 AM (GMT -6)   
Villager, happy to vent by proxy for you, glad it helped. :-) I am better this morning, as I often am in the morning.

Thanks UC wife.

I started off on lovenox injections twice a day (it was heparin in the hospital, lovenox at home) until my INR was in the range so I could switch to oral meds. The docs said the issue is not only getting rid of the clot, but preventing recurrences, and 6 months is a best guess time based on research on dvt's (clots in the leg). So, even if I had a clean scan now, wouldn't satisfy them that it wouldn't recur.

I think the issues w/the wound healing now are mechanical -- it's just in such a bad place. It got down to 3 cm pretty steadily, and I am mostly functional -- just can't sit too long on hard flat surfaces, even w/my pillow. My surgeon assures me that my WOC nurse has healed wounds that were "50 times worse" and she just had me change to a different packing material that will keep it drier. It wants to close from the outside not the inside now....

I stopped taking a protein supplement because I've gained so much weight, now I weigh as much as I have ever ..... it's good, but I don't want more. I think I will check in w/my team who haven't mentioned protein for a while. The shake I was using was intended to be high calorie, and certainly I could supplement with something else that would be less so. Appreciate the reminder.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 5/11/2011 6:52 AM (GMT -6)   
Is vitamin C also good for healing I read? We have the chewable orange citrusy ones which is like eating sweet tarts.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

SigmaChi
Regular Member


Date Joined Apr 2011
Total Posts : 27
   Posted 5/14/2011 9:56 PM (GMT -6)   
I am also 2 months into my coumadin regimen. I absolutely despised the lovinox shots. my arm had this giant bruise on it from them. Since I had a picc line and pretty much no fat in my thigh or hip to put it into I had to suffer for a couple weeks. Eventually just stopped them before I was supposed to.

I'm taking 7.5mgs of coumadin alone now. My INR is decent, inbetween 2.0 and 3.0 like they want. I've been very fortunate in that things haven't fluctuated too crazy so far. I have to go get the INR test every two weeks.

It is annoying because I also had a CT scan, where they'd found a "clot" under my small bowel, and even though the GI doctor thought that the scan had overexagerated, they still put me on it. So i'm stuck with this junk for a while. lol.
No colon, still rollin'

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 5/15/2011 6:03 AM (GMT -6)   
I've been on humira and cimzia before, so while I didn't love the lovenox shots, they weren't a huge deal to me. I was skinny, but able to do them in my side, and they didn't hurt very much.

My INR keeps being low, and they keep upping my dose. I have been adding some vitamin K foods to my diet (mostly spinach) and it is sometimes a challenge to eat the same amount every day (if I'm eating out, but hey, cool that I can eat out). I am up to 7.5 mg 4 days a week and 10 mg 3 days a week. I get my INR checked every week.

I seem to always have a little blood when I blow my nose, but the biggest side effect so far is the super heavy periods..... over that for a bit.

Sigma Chi, sorry the shots were so bad for you. Are you in for six months too?
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery
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