Crohn's Disease Forum » Your Story » Plans, interrupted...


04-10-2011, 09:53 PM   #1
Doc
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Plans, interrupted...

Hi everyone. I am overthinking life (as usual) lately and needed to see if anyone could relate... or help me figure out how to perseverate about something else! (Sorry, this is long - warning in advance...!)

I was diagnosed with small bowel Crohn's (failure to thrive/growth delay, but otherwise "healthy") in the 80's, got on asacol and pm NG feeds for 3 or 4 years therafter, and was then fine until the late 90's when I got very ill in college. I got stuck on prednisone 60mg/day for 4-6 months, and finally got off the asacol and on infliximab about a month before my first resection. Worked great, only lost 6" of TI, and 10 strictureplasties. Started 2mg/kg azathioprine prior to surgery, have been taking it ever since, doing great. No symptoms on a daily basis, just some abdominal pain if I eat corn/lettuce/etc. (Also, no further infliximab b/c I was doing so well...it was literally brand new and so no one really knew the requirement for continued dosing...)

Fast forward to mid-2000's; I get sick in the middle of medical school, upper GI shows a nice big stricture and a few little ones. Resection #2 and 3 strictureplasties later, and I'm off to sit for exams the next week. Sucks, but I admit that I was kind-of in pain for a while, but now I'm feeling really great.

And this brings me to about a month ago. I'm in the hospital (working overnight) and get this horrible, persistent abdominal pain. My good friend sees me, convinces me that I'm a moron for sitting around in this much pain, and walks me to the ER. Long story short, after about 3 hours, several doses of dilaudid, and that god-awful berry-tasting volumen or omnipaque or whatever pre-CT, I get a visit from the general surgery resident who informs me that I'm being admitted for a high-grade jejunal obstruction. I put in my own NG tube, and start the barrage of texts to my best friend (who thankfully is also a surgery resident and, being on call, is awake and alert at 04:00!)

So, after really having no recent symptoms at all, I'm now on daily budesonide, in the loading phase of Cimzia (apparently since this all happened while on azathioprine, I need something stronger), and on the OR schedule in early June.

The real issue is that, as best as I try, I cannot stop thinking about having surgery again. It will be #3, so why am I so stressed? I think it's because I have SO much advance notice... my mind seems to keep drifting back to it.

So, what would you suggest? I am trying my best to keep busy with all sorts of other things (and when I do happen to start thinking about it, I try to be productive, like thinking about what books I should put on my Kindle pre-op, or thinking about which track pants might be most comfortable for the post-op walking...)

Sorry for the long tale, I hope that it gives some historical perspective. Any thoughts would be appreciated... I also hope that you all are hanging in there, whatever your situation might be. : )
04-10-2011, 10:05 PM   #2
Keona
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Hey Doc
Sorry you are needing surgery again! I had to laugh as I went shopping today as I have surgery tomorrow. First off, I was told that they are no longer called "track pants" they are called "sweat pants" I went to Roots. They are a little pricey but I have a few pair and they have the open cuff on the bottom. They are very comfortable and the draw string is flat not the round kind.
I know what you mean by drifting back to it - my last surgery date was on the 5th and they bumped me until tomorrow. I have a dog and I find her to be my best ally in all of this in terms of distraction. I also like to cook so eventhough I cant eat it right now, I can still freeze it for after surgery when I am feeling better. I also like the kindle option!
When are you having surgery? DO you have an idea when yet??
Take care and I hope your health improves!

oh!! hanging out with your friends kids is also a great distraction. They are very funny and make you laugh!!
Wendy
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Dx GERD 2008
Dx Gastritis & hiatal hernia Feb 2010
Dx non-definitive Crohn's June 2010
Dx Endometriosis April 2011

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04-10-2011, 10:10 PM   #3
Crohn's 35
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Join Date: Oct 2009
to the forum. We are lucky that doctors are reading our posts. You are the 3rd that have joined here. I have had 2 resections in the Ileum and missing a total of 2ft of intestine but must still have some of the absorption intestine left. I have had symtoms since I was 15 but the major pains started at 31-32 yrs of age. I dont envy the NG tube, I have never had it, they tried but I refused it. Obstructions are scary, and major pain involved and (knock on wood) if I get another one down the road I will have a 3rd resection. So far avoided the bag. I have had all the meds too.. we don't have cimzia and some have but I havent heard of anyone on it long term. Maybe it is their drug and are enjoying life I dunno.

My daughter is heading in the medical direction, but she is leaning towards research. She stresses out alot and gets burn out in University so it is no surprise to see you flare. Stress as you know is a culprit. So nice to see you take an interest. Btw what is your medical field? Hope you feel better and get on track. Welcome aboard!
04-10-2011, 10:34 PM   #4
Doc
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Hello to my new Canadian friends! : )

@Keona - Really? No longer "track pants"? Hmm, good to know...! (Who changes these terms!?) Thanks for the suggestions - good friends are definitely essential... and it's also therapeutic, I think, to type it all out in the blogosphere! I hope your surgery goes well, and remember to laugh a lot tonight so you get it all out beforehand. : )

@Pen - Thanks for the welcome! I hope you are doing okay - sounds like you are hanging in there for now...? Yeah, Cimzia is apparently the newest, bestest (and priciest, I'm sure), but whatever works, I guess. I hope your daughter is liking her research thus far; we need good women in science! I'm in Allergy/Immunology, and I enjoy it immensely. Thanks again for the warm welcome.
04-10-2011, 10:36 PM   #5
silveyk
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Join Date: Apr 2011
Hey doc...

My spouse has severe Crohn's and is going through a major flare. She is a workaholic / social butterfly, so when she ends up in the hospital she goes a wee bit loopy from boredom. I would suggest literally scheduling friends and family to come and see you to keep from feeling isolated. Reading is good...but I would suggest bringing your laptop and watching the funniest films you can find on Netflix to keep you feeling up.

Oh...and tell them your nursing staff that you are a doc, so they will give you the VIP treatment you deserve. When my spouse is in hospital, I follow all her bloodwork, scans and notes...so she feels like she knows what is going on. Make sure that you or a friend can do the same.

Dr. S

********
Spouse's regimen

Asacol
6-MP
Humira
Steroids
Probiotics
Ginger Force
Aloe Vera
Senna
Miralax
04-10-2011, 11:04 PM   #6
Keona
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Hey Doc! I really don't know.... I used the "track pants" term today and a kid quickly corrected me.. lol....
hey
hope you get a laugh.. post it above your bed if possible..
http://www.crohnsforum.com/showthrea...ght=pain+chart
Wendy
04-11-2011, 05:23 PM   #7
ameslouise
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Hey Doc and welcome!

Have you chosen your line of practice yet? Where are you studying?

The waiting is the WORST part of surgery! I agree with Silvey - computer and Netflix are a must! I also scheduled visits with friends and it really helps. Plus they can pick stuff up for you on their way over if you should need something.

Good luck - keep us posted. When is your surgery date?

- Amy
04-11-2011, 05:32 PM   #8
bruscar
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Welcome Doc,

OOH being a doc you muuusssst like reading ?

Don't even go there about the surgery and over analysing life. it will be dark tonight and bright tomorrow mate, "just let it roll", and good luck

Bruscar
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5 surgeries,(so far!)Crohn's colitis,permanent ileostomy,post herpatic neuralgia (from shingles)
04-11-2011, 05:48 PM   #9
Jer's Girl
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Welcome Doc! Iím sorry you are going though surgery again, but it wonít be so bad as long as you use lots and lots of pain meds and take care of yourself! Let me guess, a bit of an over achiever type who is going to have a hard time staying in bed and healing? Just try to remember what you would tell a patient, and be kind to yourself, and forgive yourself for being sick. Sometimes it is hard to admit we arenít invincible. Iím sure it is doubly hard for Drs who spend their days trying to make other people well!

It sure is nice to have a few Drs on here. Try not to be too offended when we all get a wee bit ticked off at ours LOL! Welcome to the forum and I hope you surgery is as quick and pain free as possible!
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-Nicole
04-11-2011, 07:53 PM   #10
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Hey everyone, thanks for all the well wishes and suggestions. I am feeling more optimistic already after being able to share my story, so thanks for taking the time to read/comment....I also decided today that, if nothing else, (sorry if this is TMI...) I deserve to have some new, cute (yet practical, of course) underwear for the hospital stay, so I went and picked up a few pairs! (I feel better already!) : )

@silveyk - Nice call re: Netflix. I could definitely use the "free time" to catch up on a few seasons of TV episodes, as well. As for special treatment, it's always been very good in the past. However, I was thinking of having my husband pick up bagels for my anesthesia/OR team the morning of surgery, just so that they are well-fed and therefore hopefully do an "extra good job"! I hope your wife is doing well, and is back on her feet soon.

@Keona - That scale is hilarious, and much more appropriate! Hope you're recovering well!

@ameslouise - Thanks for the welcome! I'm in Allergy/Immunology, in the midwestern US, and do about 1/2 research, 1/2 clinical. Surgery is the first week of June... plenty of time to find track pants (or whatever they are now called!) and get psyched to go.

@bruscar - I like it. I'm gonna try things your way and see how it goes. : )

@Jer's Girl - Thanks for the reminder... I've heard that doctors make the worst patients (clearly evidenced by my failure to realize I was acutely obstructed and instead trying to work!) No worries re: doctor complaints - I firmly believe (and tell my patients) that any good doctor should encourage a 2nd opinion if there's ever an issue. (Hopefully you've had good luck with yours?) : )
04-12-2011, 07:47 AM   #11
Jer's Girl
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Iíve had some good luck and some bad luck Doc. I think it is hard for some Drís to see patients as real people and not just bodies with diseases. Hopefully you wonít have that problem being both a Dr and a patient!
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