Ten years on...

[astarks]

Hi, all!

So, I've been diagnosed with Crohn's for 10 years now, but been symptomatic for closer to 15. I also suffer from SpA and a form of dysautonomia called POTS. Yay me!

Anyways, I've been through about every med possible, everything from 5-ASA to 6-MP, Prednisone, MTX, Bentyl, Flagyl, Imuran, and so on and so forth. After a year and a half of being relatively stable on Imuran, I've just recently been restarted on Remicade thanks to stress-related flares (my 2nd go-round with this drug).

While I've spent my fair share of time on things like TPN, I've been lucky to have avoided major surgeries thus far, excepting, of course, the relatively un-invasive, but still rather invasive feeling annual colonoscopies.

Anyways, I've been lurking around on crohnsforum for some time now, so I figured I may as well go the whole 9 yards and make an account. I look forward to getting to know you all soon!

P.S., if you're interested in reading more about my background, I just posted a very in-depth version of my Crohn's/POTS story on my blog. Feel free to check it out!

 

[DJW]

Hi and welcome.

Glad you decided to join.

 

[Clash]

Hi and welcome!

My son has Crohn's disease and JSpA(juvenile spondylarthropathy) related to IBD. We go in December for MRI to check level of inflammation and joint fusion. For his CD, he recently had an ileocecectomy and is now back on remicade and mtx.

I'm the one in the family that has POTs. Ughh. But my son and I work really well together as a team and he is such a blessing when I'm not feeling the ability to get vertical! LOL. We tag team our illnesses Ha.

Anyway, big welcome and I'm sure your insights will be appreciated here!

 

[astarks]

Thanks for the welcome! Nice to see someone else around here that understands the POTS issues, even if it isn't necessarily in combo with IBD/SpA.

 

[nogutsnoglory]

So nice to have another POTsie here. I have some form of orthostatic intolerance. What do you take for that? It's weird how it can flare up, it has a mind of its own.

 

[astarks]

Definitely got a mind of it's own! I was feeling totally fine at school the other day, then out of the blue, I stood up and passed right out. That woke my classmates up for sure!

Anyways, I take Florinef daily, Midodrine as needed, and my neurologist also gave me a prescription for Klonopin for the associated anxiety/insomnia. Plus I have a set of "exercises" that I'm supposed to do to train my body to be able to stand up without the bp drop.

 

[Clash]

I don't have bp changes though my bp is generally low. Mine is the standard hr increases with postural changes. I did not do well on Florinef or midodrine. I went through several beta blockers as well as a calcium channel blocker before finding something that wouldn't lower my already low bp.

So now I take 10mg of nadalol and due to some studies I found we added levsin and low dose celexa. Those have worked really well together. Before my hr ran- 65 lying down, 85-95 sitting, and 120-145 standing. Now I'm 65 lying down, 72-80 sitting and 90-105 standing, so much better.

I'm in the process with setting up some strength training with a physical trainer and I'm really looking forward to that.

Passing out was the worst! It didn't happen with me at first so freaked me out the first couple of times it did. I also despise the feeling of short of breath.

How are you faring with the midodrine?

 

[astarks]

Yeah, I have the bp drop and the hr increases. I mostly rely on the Florinef, and only take the Midodrine on the really bad days...it keeps me upright most of the time, and I haven't noticed any severe side effects from either. However, my hr still tends to run a bit on the higher side than is strictly normal, just not enough to cause major negative effects most of the time.

My biggest problem at this point is that I still seem to spend a lot of my life in a mild state of dizziness, at best. I mean, I've gotten used to it, but it's still annoying. And I have yet to find any solution to the brain fog either. I sat down to pay my bills the other day, and I literally couldn't even get the check filled out because my brain was so foggy. Not good for a university student!

Good luck with the training! That sounds great! I used to be a runner, so I'm still hoping that one day I'll be able to work myself back up to that. My rheumy says it's bad for my joints, but my neuro/cardio people are all for it haha.

 

[Clash]

Ugghhh brain fog is the worst. I had dizziness early on but right now I'm only affected by it if the barometric pressure drops...then all bets are off as to whether I stay on my feet. It usually means a day in bed.

Have the docs discussed adderal or something similar for the brain fog? I have a fried who swears by it for her brain fog and oddly enough normal sleep patterns. She has POTs too but isn't on this board, her primary illness is EDS.

 

[astarks]

My docs haven't discussed anything specifically for treating the brain fog yet, but it's gotten a lot worse for me in the past couple of months, and I haven't seen the relavent doctors since then. I'm in a little bit of a bind right now as I've moved states, to a much smaller town, and I'm having trouble finding a good neurologist nearby. I've found a new GI whom I like, but I've been making do with my old neurologist/cardiologist when I go back to visit my family until I can get a better arrangement worked out. I'm seeing my cardio guy in December though, so hopefully he'll have some ideas.