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interesting cause of seizures

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Crohn's Disease
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Posted 5/2/2011 4:06 PM (GMT 0)
I resently had surgery for hysterectomy and bowel resection.  Following this surgery I had 5or 6 days of multiple severe seizures.

After consultations with surgeons and neurologists the neuro has an interesting reasoning for the seizures.

As some of you probably experience, I have a hard time with IVs (can't get them in and if they do not last) and have peripheral neuropothy in my hands and legs.  From what the doctors can tell I have deteriation of the supporting tissues of the veins.  All the specialists agree that this deteriation is from both the Crohn's disease and meds for treating it.

So the they are feeling that if the deteriation is taking place in my arms and legs that it is quite possible it is happening in my brain  along with thinning the myelin (thin layer of protective tissue around the nerves in the brain).  This deteriation of supporting tissues has made me more susceptable to seizures particularly during stressful times. (physical stress...ie major surgery)

It amazes me just how much this disease affects not just our guts, but all systems in our bodies.

Anyone else have experiences like this??

Tanya

Posted 5/2/2011 4:30 PM (GMT 0)
Oh my goodness how scary!! Never had this happen, and with the crappy condition of my viens it sure makes me nervous. I swear sometimes if its not one thing its another. The disease that keeps on giving. Hugs!
Posted 5/2/2011 4:49 PM (GMT 0)
That is really interesting Tanya - thanks for posting and i hope you settle down as you recover and find better health :)

Lesley in NZ
Posted 5/2/2011 11:05 PM (GMT 0)
Studies have shown that up to 3% of people with inflammatory bowel disease develop some type of neurologic problem. I developed peripheral neuropathy and nOT from low B12. The inflammatory process attacked and killed my nerve endings in my feet and lower legs. I'm sorry you are having to deal with the seizure issue. Those effect so much of ones activities, like driving, etc. Hope they get them controlled quickly.
Posted 5/6/2011 1:39 AM (GMT 0)
Tanya, I have been wondering about you!!!

How far post op are you? Are you feeling somewhat better now?

You might remember I also had the same surgery a little while ago. I'm doing *okay* now. It was a hard surgery, for sure, but hopefully will be well worth it for both of us.

I am hoping and praying for your recovery.

(((((((((((westat)))))))))))
Posted 5/6/2011 12:41 PM (GMT 0)
Thanks ladies .....

Roni I do remember you and have been wondering how you have been doing. 

I am 7.5 weeks post op now, but man it has been a battle!!!  Started the day of surgery with up to 8 or 9 seizures a day each lasting 15 to 20 minutes.  I have total memory loss for those days.  I was discharged 9 days after surgery just to go back the next evening because of an abcess and spent 2 more days.  Then 4.5 weeks post op I was in for another 5 days from what they feel was a blockage from scar tissue or bowel twist.  (They did not want to do a CT again because I had 3 since my surgery)

Tummy wise I am doing ok now.  Though I have found that eating meat, especially red meat causes me pain and extreme nausea. So now trying to find ways to keep my protein and iron intake up.  Otherwise I am eating foods I have not been able to eat for years!!  I am sooo happy about that!!!! Do I dare think that this 3 year flare might actually be over???

But now I have such severe fatigue that everything seems like a huge workout.  I go for bloodwork on Monday to make sure that there is nothing underlying causing problems with that.  I am also still unable to focus on things like reading a book  and have become extremely forgetful.  It is driving my kids crazy because I never remember that they tell me things.  they have started leaving notes everywhere.....  The neurologist feels that this is lingering effects from the anestetic and from the severe seizures.  I am hoping it gets better SOON!!  And I have had no signs of seizure activity since 11 days post op...so Neuro gave me permission to drive when I was free of them for 4 weeks... I hated not being able to get myself around, especially since I am a single mom!!

Well now I have rambled on.....

How are you doing with your recovery???  Have you had any complications?? I hope you have some semblance of remission!

Tanya

 

Posted 5/6/2011 9:50 PM (GMT 0)
I am so sorry you went through such a hard time. What an awful experience.

I did not have any major complications. Around two weeks post op, internal fluid found its way out through my incision. Never had that happen before, but apparently that's common. Also, went back to ER several weeks post op, because I found a small lump in my arm which supposedly could have been a clot, but wasn't (and I knew that too, but listened to my family and a nurse). That was a big waste of time.

My main issues now are continued LRQ pain and "d". I'm pretty sure the LRQ pain is related to ab. muscles and nerves, and hopefully not emerging CD. My surgeon said he did quite a bit of yanking.

Other than that, I'm eating better than I was before surgery for sure. I had a filet mignon steak a few days ago (couldn't eat it all, but it was so good) and even tried corn.

Have your stools returned to normal at this point? Do you have much ab. pain?
Posted 5/8/2011 7:27 PM (GMT 0)
I do not have any constant pain, but I have a lot of trouble with a lot of gas pain. I did not have that before, and I am hoping the gas problems will get better with time. Who knew gas could cause so much pain!!
Now if I do too much physical stuff, walking too much or stuff like that I get lower stomach pain, but it feel muscle like.

My stools are mostly normal for me. Nothing overly formed but not water like anymore.
I seem to be having more trouble with the hysterectomy part of the suregry....low pelvic pain when peeing, (feels like the pain you get with a UTI, but it is not that) and still have mild discharge.
Posted 5/9/2011 2:10 AM (GMT 0)
Tanya, I also had pain during urination until almost 8 weeks. It's much better now. The hysterectomy part went great for me. I'm loving it!

Today, I had quite a bit of right sided pain, LRQ and URQ. I'm *pretty sure* gas was the cause for that, though.

I guess time will tell. In the meantime, I'll just enjoy eating a little more of my usual danger foods. I tried peanuts today—a definite no-no for now. Maybe I'll try again in the near future.

Anyone in remission eat nuts?
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