Crohn's/dehydration and seizures

[Warrior Girl]

July of 2012, I experienced my first tonic clonic (grand mal) seizure. Was taken by ambulance from my office and underwent a bunch of tests.
Was given some anti seizure meds and followed up with a neuro as out patient because the one in the hospital was a...well...he was a moron. Said my "seizure was anxiety attack". Mind you, both the paramedic and RNs in ER witnessed the seizures (think I had a total of 3)
My new neuro seems to think the cause could be my drastic swings in electrolytes. I dehydrate often. I usually go for IV rescue once a week as an outpatient.
I'm currently on a high dose of Keppra daily. Still, I have seizures.
Has anyone else experienced seizures?

 

[muppet]

I'm a little concerned that you're going for weekly IV rescue. What's causing your chronic and severe dehydration, exactly? I know it's probably "Crohn's" but what aspect of your Crohn's? Is your Crohn's not under good control? What's your treatment/diet regimen?

I've had seizures but I'm fairly confident they were due to asthma medication even though they continued for a few years after discontinuing the meds.

 

[muppet]

Oh, I see elsewhere that you've posted about your short bowel syndrome. When you get more accustomed to the forum, consider making a short signature that lists your condition and what treatments you're on or have tried, it makes the information you get back in threads more complete. I still have yet to do this, myself....

What does your GI say about your dehydration issues? Have you tried anything other than psyllium husk?

 

[Warrior Girl]

I'm a little concerned that you're going for weekly IV rescue. What's causing your chronic and severe dehydration, exactly? I know it's probably "Crohn's" but what aspect of your Crohn's? Is your Crohn's not under good control? What's your treatment/diet regimen?

I've had seizures but I'm fairly confident they were due to asthma medication even though they continued for a few years after discontinuing the meds.

I have short bowel and only 3 inches or so of my colon left. I have chronic, constant diarrhea--that's why I dehydrate so often. And, yes...all due to crohn's. I take Humira for the crohn's. my absorbtion is horrible because of the short gut. My crohn's has never really been well under control except when I had my first ileostomy back in 1996. That one was reversed 4 yrs later.
I have a very poor appetite. Very poor....I eat in a week what most would eat in a couple days.
I had an ileostomy reversed in oct 2012. (My second one). Did this is hopes of allowing more absorbtion with that little bit of colon I have. But, so far....not as good an outcome as we hoped for. :-(
Oh, I do take tincture of opium to slow things down, also. And, may start a new med just approved for short bowel-- my GI is researching it and ill know if I can take it on my next visit in a couple weeks.

 

[muppet]

I'm so sorry that you're having such a hard time. I don't have any personal experience with short bowel at all, mostly it's my second-to-strongest deterrent for accepting any surgery for myself or my daughter.

Have you tried/considered enteral nutrition? It might help address your absorption issue and possibly even your dehydration?

 

[Warrior Girl]

It hasn't been easy. If not for my sunny disposition. I'd have thrown in the towel long ago.
I've been on TPN in the past. It's going to be something we discuss at my next visit but, definately a last resort.
Thank you for the support! I really like this forum
Oooooh! And I made a signature, too! I follow instructions very well ;-)

 

[muppet]

EN is a little less drastic than TPN and can have positive effects on your Crohn's akin to corticosteroids. It's like drinking lots of diet shakes, basically. There's also the option of an NG tube if you're not especially vain or you have trouble getting things down.

I'm trying to think of who I could page to this thread who might be able to speak more authoritatively about short bowel. Maybe DustyKat or Crabby will know somebody.

 

[Warrior Girl]

I'll be interested in hearing more advise....and, I read about EN so I can at least discuss it with my GI on next visit. In my reading, I see urine output should be at least 1 liter a day. I don't urinate much at all. Little bits here and there. But, I've also been not as diligent as I should on oral intake. It's just so painful.

 

[sugacookie]

Hi, I was maluntritioned because of my crohns and was put on tpn. It really helped me so I would really recommend you speak to your doc about it. Fortisips and fortijuices are really helpful too. They are drinks you can have to boost your vitamin and calorie intake x

 

[Jennifer]

Hi Warrior Girl! Is your GI aware of how painful liquid intake is? If not it'd be a good idea to let them know before your appointment. Sounds like Humira really isn't doing its job.

I'm curious, why is TPN a last resort? You can do the TPN at night and then go about your daily routine without being stuck to an IV. You'd need a PICC line or central IV of course (I've had a central IV in the past, real easy surgery and maintenance). Just wondering if this is something you could do to avoid needing rescue IV fluids so often.

EN along with TPN may be a good idea. You could try that for a couple years then try EN only for a while and see how you do in case you fear being on TPN the rest of your life due to the risk of blood clots etc. http://digestive.niddk.nih.gov/ddiseases/pubs/shortbowel/index.aspx

Also, I do not see your signature if you added one.

 

[Warrior Girl]

Hi Warrior Girl! Is your GI aware of how painful liquid intake is? If not it'd be a good idea to let them know before your appointment. Sounds like Humira really isn't doing its job.

I'm curious, why is TPN a last resort? You can do the TPN at night and then go about your daily routine without being stuck to an IV. You'd need a PICC line or central IV of course (I've had a central IV in the past, real easy surgery and maintenance). Just wondering if this is something you could do to avoid needing rescue IV fluids so often.

EN along with TPN may be a good idea. You could try that for a couple years then try EN only for a while and see how you do in case you fear being on TPN the rest of your life due to the risk of blood clots etc. http://digestive.niddk.nih.gov/ddiseases/pubs/shortbowel/index.aspx

Also, I do not see your signature if you added one.

I've been on TPN in the past and ended up with a horrible infection and in ICU for a week. Just a bad experience / time so I'm rather hesitant. I do a have a port so, at least that parts taken care of in case I do end of on it.
I really would rather get the IV fluids once a week than do the TPN with the risks involved.

But....this all gives me things to ponder and create a dialogue with my doc. I'll start my "pro's and con's" list next. :thumright:

 

[Susan2]

Crabby, a signature doesn't appear retrospectively. Warroir Girl's will appear with her first post in a new or different thread.

 

[Jennifer]

Susan2 it appears in their first post in any thread on any page. It just appears once per page really. Are you saying that you can see their signature in their first post? If you can then I'd like to report a possible glitch since I can't see it. Thank you.

 

[Susan2]

Sorry, Crabby, I am not sure what you mean. The signature should be in a person's first post, shouldn't it?

Warrior Girl's signature does not appear in her first post because she added her signature later -that's what I mean by "a signature doesn't appear retrospectively".

 

[DustyKat]

It does appear retrospectively doesn't it?? Just as changes to your signature do.

If I am wrong I will just say I am a technophobe, which wouldn't be a lie anyway! :lol:

 

[Jennifer]

No it should be showing up even if it was added later. I'll report a possible bug. Thanks.

 

[D Bergy]

Can you take Cholestyramine with short bowel syndrome? It really makes a huge difference for me. Makes thing close to normal, and it has some other lesser known benefits as well.

Dan