Hi,

I knew my recovery was too easy . . . I had the j-pouch creation and reversal done in one surgery 6 weeks ago. I have been doing pretty well lately, but I was still experiencing fever in the evenings and nightsweats on and off for about a month. I finally called my surgeon's office about it (long story about why it took me so long to call). She was worried enough to send me to the ER to get an emergency CT scan. I guess they were worried it was an abcess.

Long story short, the CT scan revealed I have "focal thrombosis". Because my surgeon lives in another city, I've opted to go to my family doctor for treatment, with the blessing of my surgeon. My surgeon said I may need a course of blood thinners. Unfortuantely, I can't get in to see my family doc until Monday, which means I'll worry about it all weekend.

Does anyone have any experience with this? I did a search, here and on google, but there is little mention of "focal thrombosis" - I guess it is different from other types of thrombosis (DVT, aterial, etc.)? Any information is welcome.

Unfortunately, the surgeon said the thrombosis doesn't explain the nightsweats I've been experiencing. I'm still searching for the cause of those . . .

Thanks!

Hey, Red! I'm sorry to hear about your troubles. I had been hoping you were on the mend with only increasing happiness. The night sweats may be from stress or from the steriods they gave you in the hospital. I don't have any answers for you, but wanted to let you know I was thinking about you.

Hope better days are coming for you. Love the baby!!

Take Care!
Susan

"It's hard to soar like an eagle when you work with a bunch of turkeys!"

I would not wait until Monday to get more answers and/or treatment. Focal thrombosis simply means that you have a blood clot that is localized. However, it says nothing about where it is localized or how urgent the treatment needs to be. Call your primary doctor back and request an urgent appointment for within the next 24 hours. They always leave room for these sorts of appointments. If he is out of the office, see whoever is covering for him. If you get the run-around, call your surgeon and explain what is going on. You should not be left in the dark about this! It may well be that it can wait until Monday, but it does not sound like you have been given enough information.

Jan

Thanks to you both for replying.

Rodhunny - yeah, I have been doing really well otherwise as I've been able to go longer and longer between BMs, I'm back introducing fruits and veggies into my diet, I'm able to leave the house as long as I know there is a bathroom nearby. I knew it was going too smoothly to be true I hope this is a small bump in the road!

Jan, thanks for taking the time to explain. I did call the surgeon back and asked whether I should make my way to Toronto (4+ hours away) immediately, head to emergency or wait until Monday to see the family doc. She said that these types of thrombosis are common in patients with j-pouches and that no studies have conclusively found them to lead to further complications. She said not to worry and that it should be fine to wait until Monday. She said my family doc may choose to treat it with blood thinners (not sure what factors will influence whether or not she does). Looks like I'll be waiting until Monday unless I want to go sit in the ER again, and after waiting 8 hours yesterday, I just can't do it again. I'm so sick of waiting in ER. I'll just have to trust the surgeon (and I do, as she is one of the top colo-rectal surgeons in the country).

I'll report back on Monday . . . hopefully with good news!

Hi Kristen,
It sounds like you've had one heck of a week. Sorry to hear that. It must be a challenge trying to keep the communications going between your surgeon, the ER, and your family doctor....

Do you think this is what was/is the cause of the pain you were experiencing, or is it something completely unrelated??

I'll be thinking about this weekend - I know how frustrating it can be to sit and wait for answers.

Louise

Hi Redheadedmama!

When I had surgery in 2001 I devoloped a portal vein thrombosis which nearly killed me.

You will need to have treatment for this as soon as you can.

My surgeon advised me that I was the first to have this problem at least at that time. He had done approximatly 260 cases.

I was hooked up to IV bloodthinners around the clock when it happened to me.

Then I had INRs done every 12 hours for several days until they were sure that my blood was good and thinned.

I was on warfarin for close to three years afterwards until I'd seen a blood disorder specialist who advised me that I could come off of it.

Thanks for your concern, guys.

NJ, I was worried when they first told me about it that it would be as serious as what you went through, but they keep minimizing the severity of it. I wonder why?

A doctor from ER actually called me at home yesterday to follow up (amazing - this has never happened with all my trips to the ER over the years!). He said that the radiologist wasn't even sure there was a thrombosis and so they want me to go in on Monday for an ultrasound to better determine whether or not there is anything there. He said not to worry about it.

I guess now that I finally have three docs of varying levels on board with my case (a surgeon, an ER doc and my family doc), and none are too concerned about it, I'll just have to trust them. I will be sure to ask why some people get the serious treatment (like NJ) and I'm told not to worry . . . it must be a small thrombosis?

It is nice to finally have three doctors across the province coordinating with each other. Will wonders never cease

Unfortunately, even if it is a thrombosis it doesn't explain the nightsweats and fever (which, thankfully, I haven't had the last two nights). I still have to follow up with the family doc about those.

Hi Red!

It's good to hear that they are not too concerned. I wonder if the thrombosis that I had was larger due to the fact that I had traditional surgery as opposed to laproscopic surgery?

I do remember the night sweats and I also had a really high fever for several days before they discovered the problem. I recall alot of pain in my right lower quadrant and alot of fluid kept leaking from my backside. The doctors explained that my intestines and surgical site were enlarged because the blood would not drain normally due to the clot. This situation compromised my surgical site, which would have eventually caused tissue death or necrosis.

I don't know if this is as accute of a situation as what you've described, but it's good to hear that you have a team of doctors looking into this for you.

NJ

Hi again,

Just wanted to follow-up on my post, not because I think everyone cares about my problems , but because too often I read a thread that relates to a problem I'm experiencing and it just ends abruptly with no conclusion and I'm left wondering "what happened?".

So, my family doc referred me to the thrombosis specialists and I got in to see them right away. The thrombosis doctor said the CT scan revealed what could be a small thrombosis in one of the veins that runs off the portal vein. She said it was possible that it had been there since my colectomy, but that no one noticed it before since I hadn't had a CT scan since before my colectomy. She said that because I wasn't having any other symptoms (i.e., like those NJ describes above: pain, stomach swelling, etc.) that she didn't want to risk treating it with blood thinners as they come with their own risks. She said we'd do an ultrasound in another week to determine if the blood clot was growing or becoming more of a concern. She said that my fever likely isn't related to the clot, as normally you only see fever if the clot is cutting off blood supply to an organ, in this case the liver, and is accompanied with other symptoms (again, pain, evidence of liver function failing on a blood test, etc.).

So, fingers crossed, it will turn out to be benign. I'll try to follow up next week after my ultrasound just to close the loop.

NJ, sounds like you really had a scary experience with it all - funny you should mention that you had fever and nightweats too. I will definitely keep an eye on my symptoms and will let the docs know if anything changes.

Thanks for the update Red! Having more information certainly helps a person sleep at night, doesn't it?

Jan