I think im going to schedule my surgery date on monday.

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debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 5/22/2010 7:17 AM (GMT -7)   
I think I am going to call the Surgeon on monday and schedule a date for the resection we spoke about.

I think it's time because I need to get back to my life.
I am a bit afraid of the whole thing but 9 years of this pain sucks.

The TPN is what is preparing me technically for the surgery.

What do i expect?

My doctor wants to put me on 6 weeks to 3 months of Flagyl after surgery and RE start Humira once i recover.
Problem is, I have been on all 3 TNFs already and Im afraid i wont respond and have to have another surgery in the future.

Whats the average time spent in the hospital?
Male, 22. Diagnosed with Crohn's officially since 2001.. Osteoporosis, Generalized Anxiety Disorder, Chronic Anemia.

Medications Used: Remicade, Humira, Cimzia, 6-mp, Pentasa, Flagyl, Prednisone, Zifaxan, Entocort,
TPN (Total Parenteral Nutrition), The whole nine.

Currently:, Entocort EC, Vitamin D, Fentanyl 12mcg / 72hrs, TPN, Cardizem
Currently On SSDI


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/22/2010 7:21 AM (GMT -7)   
Average time in hospital is 5-7 days if you have open surgery, and about 4 days for lap.
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 5/22/2010 7:48 AM (GMT -7)   
What sparked this idea, when you are still very concerned about your heart issues? I get that you are tired of the pain, but is there something else going on? Concerned about you.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


Howlyncat
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Date Joined Jan 2005
Total Posts : 24909
   Posted 5/22/2010 8:24 AM (GMT -7)   
I do agree with NavY
with yr heart issues going on is your doc saying this is a good thing at this point
curious


..Co Moderator for Crohns........Alzheimers.....Anxiety/Panic

DX..Crohns,,,A/P...Fibro...Seizures..Neuropathy...Pyoderma Gangrenosum..Deaf
MEDS.....LYRICA..DILANTIN.. PENTASA.. FOLIC ACID.. MTX..ATIVAN PRN..DIAZEPAM BID...TRAZADONE

DONATE TO www.Healing Well.com
LYN

Post Edited (Howlyncat) : 5/23/2010 6:59:26 AM (GMT-6)


Nanners
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Date Joined Apr 2005
Total Posts : 14995
   Posted 5/22/2010 9:05 AM (GMT -7)   
Debilitated,
 
I too am concerned for you.  You seem to want to be self treating.  I think at this point you need to trust your doctors and follow their orders.  Right now its obvious to even the untrained eye that you are very ill.  I highly doubt they will even think about surgery for you at this point.  You can barely walk to the BR without getting winded and have your heart racing.  Just let your doctors treat you, and let "them" make these decisions for you.  I wish you well.
 
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Homeboy
Veteran Member


Date Joined Dec 2005
Total Posts : 637
   Posted 5/22/2010 11:23 AM (GMT -7)   
They will test your heart(I forget the name of the test)
If your heart does not pass, then they will not operate on you.

Take Care

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 5/22/2010 1:09 PM (GMT -7)   
Yes, they give you a pre-op workup with an EKG, blood work, etc. to make sure you're fit.

I had my resection last fall. I was sprung after 2 1/2 days, which was awesome! They had me on antibiotics in the hospital, but nothing once they released me. I've been on Pentasa since then, and started LDN in January. I also follow the Specific Carbohydrate Diet. So far, so good!

Good luck with whatever you choose to do!
34 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR, Zyrtec
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, Calcium, Magnesium, Coconut Oil, Garlic Oil, CoQ10, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 5/22/2010 10:53 PM (GMT -7)   
Ok first of all. Let me clarify some things.
First of all, Im not Self treating myself. Im not offended but its just i guess people dont pay attention to my posts.

both Gastro's I see, 1 at the University of Chicago believes the resection is the best Idea.
My gastro Close to home agrees with him because I dont respond to therapy.
I am on TPN to build my weight, strength, and recovery time.

#2, The Heart issue. EKG and ECHO and 3 week CARDIONET moniter Shows my heart is stronger than an OX. I tolerated 300BPM in the E.R Twice without blacking out. There is NOTHING wrong with my heart. It was SVT's possible RELATED to AVNRT. It only got to near 300BPM because of anxiety, malnourishment, dehydration, BP.. Yadda. Yadda.

I still have 2 months MINIMUM Left on TPN. Surgery wouldnt be for atleast 3 months.

I asked the G.I about the SVTs and he said during a resection there is NO risk of Sudden Cardiac Death or Concerns. There will be a Cardio and Anesthesiologist Present.

NOW.. That I got that cleared up with you guys....
Any questions or concerns?

Thanks!!!
Male, 22. Diagnosed with Crohn's officially since 2001.. Osteoporosis, Generalized Anxiety Disorder, Chronic Anemia.

Medications Used: Remicade, Humira, Cimzia, 6-mp, Pentasa, Flagyl, Prednisone, Zifaxan, Entocort,
TPN (Total Parenteral Nutrition), The whole nine.

Currently:, Entocort EC, Vitamin D, Fentanyl 12mcg / 72hrs, TPN, Cardizem
Currently On SSDI


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/23/2010 12:33 AM (GMT -7)   
I don't understand why you have questions or concerns then, Debilitated.

I may be misunderstanding, but from my perspective here, you seem to be contradicting yourself: you seem to be anxious about your heart etc, and then protest that everything is fine when people encourage you to consult with your doctor about it.

I hope that doesn't sound rude because I don't mean it that way; I'm just confused.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 5/23/2010 6:02 AM (GMT -7)   
just a bit confused here too
lyn
..Co Moderator for Crohns........Alzheimers.....Anxiety/Panic

DX..Crohns,,,A/P...Fibro...Seizures..Neuropathy...Pyoderma Gangrenosum..Deaf
MEDS.....LYRICA..DILANTIN.. PENTASA.. FOLIC ACID.. MTX..ATIVAN PRN..DIAZEPAM BID...TRAZADONE

DONATE TO www.Healing Well.com
LYN


dunny2
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Date Joined Jan 2007
Total Posts : 3200
   Posted 5/23/2010 9:27 AM (GMT -7)   
I have to agree with Ivy, you've certainly got me scratching my head....
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis and lupus.
B12 Shots bi-weekly

Laughter is the brush that sweeps the cobwebs from our hearts...


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 5/23/2010 9:52 AM (GMT -7)   
Can u plz clear us up on this as we are all tad confused
ty
lyn
..Co Moderator for Crohns........Alzheimers.....Anxiety/Panic

DX..Crohns,,,A/P...Fibro...Seizures..Neuropathy...Pyoderma Gangrenosum..Deaf
MEDS.....LYRICA..DILANTIN.. PENTASA.. FOLIC ACID.. MTX..ATIVAN PRN..DIAZEPAM BID...TRAZADONE

DONATE TO www.Healing Well.com
LYN


debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 5/23/2010 9:58 AM (GMT -7)   
forget it.
Male, 22. Diagnosed with Crohn's officially since 2001.. Osteoporosis, Generalized Anxiety Disorder, Chronic Anemia.

Medications Used: Remicade, Humira, Cimzia, 6-mp, Pentasa, Flagyl, Prednisone, Zifaxan, Entocort,
TPN (Total Parenteral Nutrition), The whole nine.

Currently:, Entocort EC, Vitamin D, Fentanyl 12mcg / 72hrs, TPN, Cardizem
Currently On SSDI


Southern Lady
Regular Member


Date Joined Dec 2009
Total Posts : 32
   Posted 5/23/2010 10:22 AM (GMT -7)   
Please don't be frustrated with our questions. I understand that you know what you are experiencing and you know your body and systems. I am also very conflicted about about others not getting it. But you have a lot of people that have followed you and your conditions and I am one that wants to know that you are getting the best. Please don't stop talking.
humira Feb 2010
nexium 40mg
gemfibrozil 1200mg
levothyroxin 100mg
estradoil 1mg
topmmax 200mg


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 5/23/2010 10:29 AM (GMT -7)   
Hey debil... Good luck with the surgery. I hope that making this difficult decision with your doctors will put you into a better spot in life. I'm sure the surgery will be more difficult in your less than healthy condition, but it sounds like they're grooming you for that possibility with the TPN. I can't answer much about what to expect as I've never had a resection. The only surgery in my potential future is a temp (or permanent) ileo. Just wanted to toss in the good luck.

I hope knowing this is coming will bring some peace and comfort! You've been through SO much lately...
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia, MTX . Dx Osteoporosis 10/08 started Forteo 1/27/09


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 5/23/2010 10:31 AM (GMT -7)   
Well let's wait and see what the surgeon says, because all of this thread could be moot.
It is not that we do not get it, it is about jumping the gun.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 5/23/2010 11:38:25 AM (GMT-6)


debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 5/23/2010 12:03 PM (GMT -7)   
I have already had a consult with the Surgeon, he saw all the pictures and believes it will be a good thing for me. He said he does this all the time. He is very good and known by many in chicago.

I am on TPN now to put the weight on FOR surgery being easier. Not possible TPN.. Its flowin through my veins as i type.

Both GI's recommend the surgery.

I dont want it sure. but I dont got any therapies left except Tysabri. Thats not going to happen.
Male, 22. Diagnosed with Crohn's officially since 2001.. Osteoporosis, Generalized Anxiety Disorder, Chronic Anemia.

Medications Used: Remicade, Humira, Cimzia, 6-mp, Pentasa, Flagyl, Prednisone, Zifaxan, Entocort,
TPN (Total Parenteral Nutrition), The whole nine.

Currently:, Entocort EC, Vitamin D, Fentanyl 12mcg / 72hrs, TPN, Cardizem
Currently On SSDI


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 5/23/2010 12:34 PM (GMT -7)   
Like I said let's wait and see what the surgeon says closer to when this is even on option for you. It is obviously not an option for a couple of months.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 5/23/2010 3:58 PM (GMT -7)   
Exactly Navy, Its not an option till a few months. But doesnt it take a few months to put a date in? Im going to talk to him. but yes i dunno about what he'll say..

i guess ill just have to update the thread on what he says
Male, 22. Diagnosed with Crohn's officially since 2001.. Osteoporosis, Generalized Anxiety Disorder, Chronic Anemia.

Medications Used: Remicade, Humira, Cimzia, 6-mp, Pentasa, Flagyl, Prednisone, Zifaxan, Entocort,
TPN (Total Parenteral Nutrition), The whole nine.

Currently:, Entocort EC, Vitamin D, Fentanyl 12mcg / 72hrs, TPN, Cardizem
Currently On SSDI


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 5/23/2010 5:33 PM (GMT -7)   
Where I live supposedly I could get an elective resection within a month.
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Reduced gluten and dairy.


Go Saskatchewan Roughriders!


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 5/23/2010 6:51 PM (GMT -7)   
same as here in ontario rider
i guess we are lucky there eh
how u doing btw
huggs
lyn
..Co Moderator for Crohns........Alzheimers.....Anxiety/Panic

DX..Crohns,,,A/P...Fibro...Seizures..Neuropathy...Pyoderma Gangrenosum..Deaf
MEDS.....LYRICA..DILANTIN.. PENTASA.. FOLIC ACID.. MTX..ATIVAN PRN..DIAZEPAM BID...TRAZADONE

DONATE TO www.Healing Well.com
LYN


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 5/23/2010 7:41 PM (GMT -7)   
My surgeon said he could do my elective surgery in 1 week! I declined, and had it 3 weeks later instead.
35 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, Calcium, CoQ10, Enzymes
SCD since 12/01/08 - eating Stage 3 foods

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