losing my mind! (newish member)

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

cat_eyes
Regular Member


Date Joined Jul 2009
Total Posts : 24
   Posted 5/14/2010 2:54 PM (GMT -7)   
hello, I've only posted once on this forum so I guess I'm still a new member. I've been living with Crohns for about 5 years now and things have gotten worse!
I'm currently on 6mg of entocort per day, humira once a week, and iron suppliments. Things have been horrible for the past 2 years.This year I found out that I have a fistula(and then a second one popped up 2 months later) and I need to get a resection surgery. I've been waiting so long for a date and finally got on for May 25th, however, my nurse called today saying it has to be pushed to a later time. I can't live with this pain anymore. As much as I want to feel better I'm scared to death for this operation, my last operation (and how they diagnosed me with crohn's) was a nightmare and long story short I had to get cut open three times in the same place. So I'm scared and sort of in denial because I dont want them to remove parts of my body, I'm 22 and I'm afriad that once they start cutting away it's never gonna stop. Now recently the area around my scar from the first operation I had is very sensitive and I can feel a bump right under it.   The pain I go through everyday is unbareable that sometimes I end up vomitting. I can't eat, sleep, or walk! I'm in bed everyday and it sucks. I know that it sounds like I'm nagging because I know that a lot of you have gone through the same thing, and I apologize. I just need to vent to someone who understands what I'm going through. I don't know what to do to control the pain so I just take it, It feels like knives stabbing me, I think it might be gas, but it feels like im being gutted like a fish and it never goes away, it's just day after day.
I was wondering if anyone could tell me  more about bowel resection sugery so I can know want to expect. How long does the recovery period last? how bad is it after the surgery? does the area hurt? do I need a bag connected to my intestine for a couple of days (even if its gonna be done by laser)? I'm really distressed.
 
thanks for reading/listening.

pimfram
Veteran Member


Date Joined May 2009
Total Posts : 506
   Posted 5/14/2010 6:06 PM (GMT -7)   
What are you eating? Try a liquid diet if you're having really bad pain, it made my life tolerable before I had my surgery. Also, tell you surgeon/nurse that you're getting worse and see if you can get one of the emergency surgery slots. Even with my liquid diet, I wasn't getting very good nutrition and the surgeon wanted me to get admitted to get TPN for a couple days before my surgery. I resisted (and my labs were decent) so I didn't need to, but if you're not getting nutrients it maybe be a possibility.

I had my resection via open surgery on December 21st, and spent 5 days in the hospital, including the day of my surgery. Honestly, the pain wasn't too bad, but I have a pretty high pain tolerance. I was feeling well about 2 weeks after the surgery and had 0 pain about 3 weeks after. It was probably the best decision I've ever made. Whether you need a bag or not depends on the damage to your intestines. But since it's just a resection, you will probably not need one.
Diagnosed with CD July 2007
Currently on Remicade, Imuran, probiotics, folic acid, multivitamin.
Resection December 2009

Amor fati - Nietzsche


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 5/14/2010 6:26 PM (GMT -7)   
i am so sorry for all you r going thru
i really think pinfram has great advice n input
let us know how you are doing
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
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 5/14/2010 6:43 PM (GMT -7)   
Hang in there, resections aren't too bad, much like any other kind of abdominal surgery, there will be pain, but they
will control it. You will have bad times, but they too will pass. The best advice I can give you, is, after your surgery,
as soon as you're able, WALK. I know that sounds harsh, but it really does help your bowel start to work again, it
also help move the gas, you will have, to pass. I thought they were out of their minds with my first resection, telling
me to walk, but it works.
I wish you luck and a speedy solution to your current state.
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...


hld4good
Regular Member


Date Joined Jan 2010
Total Posts : 193
   Posted 5/14/2010 8:54 PM (GMT -7)   
I had 3 resections of terminal ileum. They were all open incision from stem to stern and didn't hurt much at all. Especially after the staples are removed. I had pain meds in the hosp for 5 days but none at home. One important thing to remember is that you must take it slowly when you return to eating. Start with soft bland stuff the first day at home and work your way up to regular food as you can tolerate it. Oatmeal or cheerios for breakfast because they are soluble fiber.

You will feel so much better right away. I always felt like a new person. Be prepared to be tired alot. Abdominal surgery really takes the wind out of your sails for awhile, but look at it this way. All you have to do is eat, sleep and get well. Do you have someone to help with shopping? You won't be allowed to drive for 2 wks. Best of luck. I know you are going to feel so much better!
Age 58, Crohn's since age 21
3 bowel resections, 1980,88,95
1 fistula repair, 2005
probiotic
digestive enzymes


Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 5/14/2010 10:13 PM (GMT -7)   
Cat eyes. I'm so sorry you are going through all this. Wish I had some input that would help. All I can say is hopes and prayers all goes well and you feel better soon. But as for as losing your mind ,,,should that happen ,,we will have lots in common .
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/15/2010 8:04 AM (GMT -7)   
I have had 2 open resections myself. Have the docs said whether they are doing the surgery open or laproscopic? With the open you will be in the hospital at least 5 days and it is a little more painful, but definetly you will be given good pain meds to help. Your recovery will be about 6 weeks. Now with the lap the hospital stay is a little less and the recovery generally about 4 weeks. I agree with Dunny, try to walk as much as possible afterwards, it helps to wake the bowels back up and running again. Do expect some explosive d for awhile until your body adjusts to the changes. And most importantly be sure you get back onto maintainence meds afterwards so you don't have to have a repeat. Heres to a long long remission. Hugs
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"*

cat_eyes
Regular Member


Date Joined Jul 2009
Total Posts : 24
   Posted 5/15/2010 7:02 PM (GMT -7)   
pimfram said...
What are you eating? Try a liquid diet if you're having really bad pain, it made my life tolerable before I had my surgery. Also, tell you surgeon/nurse that you're getting worse and see if you can get one of the emergency surgery slots. Even with my liquid diet, I wasn't getting very good nutrition and the surgeon wanted me to get admitted to get TPN for a couple days before my surgery. I resisted (and my labs were decent) so I didn't need to, but if you're not getting nutrients it maybe be a possibility.

I had my resection via open surgery on December 21st, and spent 5 days in the hospital, including the day of my surgery. Honestly, the pain wasn't too bad, but I have a pretty high pain tolerance. I was feeling well about 2 weeks after the surgery and had 0 pain about 3 weeks after. It was probably the best decision I've ever made. Whether you need a bag or not depends on the damage to your intestines. But since it's just a resection, you will probably not need one.

food is actually one of my problems. I don't really know what is good/not good for me and everytime i ask my docotr for a referal to a dietician he tells me that i have to "be my own scientist and figure it out". I have to drink 2-3 ensures a day to maintain weight cuz I just keep losing it but thats it for a liquid. what exactly is a liquid diet?


cat_eyes
Regular Member


Date Joined Jul 2009
Total Posts : 24
   Posted 5/15/2010 7:09 PM (GMT -7)   
thank you all for responding, it means a lot to me.
My surgery will be done laproscopically.
to hldwodrgs: howfar apart were your three surgeries? was there a good amount of years in between?

thanks again for all your support and kind wishes!
xoxo

pimfram
Veteran Member


Date Joined May 2009
Total Posts : 506
   Posted 5/15/2010 7:21 PM (GMT -7)   
Crohn's is very individualist, you need to determine what you can tolerate and what you can't. Dietitians won't be able to tell you what you can handle, it's pretty much trial and error. What I consider a liquid diet is basically living off apple sauce, pudding, Ensure, etc. It should be tolerable and will hopefully make things less painful until you can get the surgery.
Diagnosed with CD July 2007
Currently on Remicade, Imuran, probiotics, folic acid, multivitamin.
Resection December 2009

Amor fati - Nietzsche


Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 5/15/2010 8:19 PM (GMT -7)   
The reason your GI can't tell you what to eat is because people differ so much on this disease. I could tolerate things others on here couldn't, even when I was in really bad shape. During my flares, I stuck with a mostly liquid diet but still lost a tremendous amt of weight (but in my case, I can stand to lose weight so this wasn't all together a bad thing!). I found I could tolerate mushy Easy Mac (mac and cheese), cup of noodles (ramen noodles in broth), along with Boost/Ensure, iced coffee (but I had to do soy milk for some reason), chicken broth... The pain did not go away but it made it a lot more tolerable. I just tried different things a little at a time.

Do you have good pain meds? This last flare, I took Vicodin for pain and still was able to eat most anything.

I had a resection on Feb 3. I really fought if for years before and now that I'm on the other side, I'm glad I did it. I had a lot of damage that could have gotten really bad really quickly. I thankfully did not have to wait long for mine, though. As soon as I gave in, I saw the surgeon within 2 weeks and mine was scheduled a week later - as soon as they could get an OR scheduled for me. I hope you can get in sooner...

DebbieCrohns
Regular Member


Date Joined Nov 2005
Total Posts : 174
   Posted 5/15/2010 8:54 PM (GMT -7)   
Hi Cats_eye,
 
I am sorry you are feeling so badly.  My daughter, who is now 27, had a resection when she was your age, 22.  She had it laprascopically and was in the hospital 5 days.  Once home, she only had pain medication the first night home from the hospital.  After that, though she had pain at times, she didn't need the pain medication.  Everyone is different, but it took her a number of months before she felt totally back to normal.  She decided to have resection surgery after 3 flares in 18 months.  She feels the surgery gave her her life back.
 
Good luck with your surgery and I hope you have a real long remission.  I know it is very hard to be real sick at such a young age.  And, definitely feel free to vent all you like.
 
Debbie in Chicago

cat_eyes
Regular Member


Date Joined Jul 2009
Total Posts : 24
   Posted 5/17/2010 11:50 AM (GMT -7)   
Aimee =) said...
The reason your GI can't tell you what to eat is because people differ so much on this disease. I could tolerate things others on here couldn't, even when I was in really bad shape. During my flares, I stuck with a mostly liquid diet but still lost a tremendous amt of weight (but in my case, I can stand to lose weight so this wasn't all together a bad thing!). I found I could tolerate mushy Easy Mac (mac and cheese), cup of noodles (ramen noodles in broth), along with Boost/Ensure, iced coffee (but I had to do soy milk for some reason), chicken broth... The pain did not go away but it made it a lot more tolerable. I just tried different things a little at a time.

Do you have good pain meds? This last flare, I took Vicodin for pain and still was able to eat most anything.

I had a resection on Feb 3. I really fought if for years before and now that I'm on the other side, I'm glad I did it. I had a lot of damage that could have gotten really bad really quickly. I thankfully did not have to wait long for mine, though. As soon as I gave in, I saw the surgeon within 2 weeks and mine was scheduled a week later - as soon as they could get an OR scheduled for me. I hope you can get in sooner...
 
I dont take any pain medication except for tylenol. my doctor gave me one kind, I don't know the name but it's a mix of tylenol and codine. it doesn't really help and it makes my heart race, so I only take it on ocassion.
you're lucky you got your surgery within a couple of weeks. I've been waiting for over 2 months. My doctor and I agreed to wait til after I finish my semester of university but I was under the impression that as soon I was done in May, the surgery would happen, guess not.

cat_eyes
Regular Member


Date Joined Jul 2009
Total Posts : 24
   Posted 5/17/2010 11:51 AM (GMT -7)   
Sniper said...
Cat eyes. I'm so sorry you are going through all this. Wish I had some input that would help. All I can say is hopes and prayers all goes well and you feel better soon. But as for as losing your mind ,,,should that happen ,,we will have lots in common .

Thank you for your hopes and prayers!


cat_eyes
Regular Member


Date Joined Jul 2009
Total Posts : 24
   Posted 5/17/2010 11:54 AM (GMT -7)   
pimfram said...
Crohn's is very individualist, you need to determine what you can tolerate and what you can't. Dietitians won't be able to tell you what you can handle, it's pretty much trial and error. What I consider a liquid diet is basically living off apple sauce, pudding, Ensure, etc. It should be tolerable and will hopefully make things less painful until you can get the surgery.

That sounds really tough, I'm verrrry stuborn and usually give in to my cravings even though I can feel the pain a couple of minutes after. But I'll give it a try!

 thanks.


cat_eyes
Regular Member


Date Joined Jul 2009
Total Posts : 24
   Posted 5/17/2010 11:57 AM (GMT -7)   
ebbieCrohns said...
Hi Cats_eye,
 
I am sorry you are feeling so badly.  My daughter, who is now 27, had a resection when she was your age, 22.  She had it laprascopically and was in the hospital 5 days.  Once home, she only had pain medication the first night home from the hospital.  After that, though she had pain at times, she didn't need the pain medication.  Everyone is different, but it took her a number of months before she felt totally back to normal.  She decided to have resection surgery after 3 flares in 18 months.  She feels the surgery gave her her life back.
 
Good luck with your surgery and I hope you have a real long remission.  I know it is very hard to be real sick at such a young age.  And, definitely feel free to vent all you like.
 
Debbie in Chicago
 
Debbie: thank you for your support. How is your daughter feeling now? Has she needed another resection since the first? That's one of my concerns, I dont want to have another one and lose any more of my intestines sad

DebbieCrohns
Regular Member


Date Joined Nov 2005
Total Posts : 174
   Posted 5/17/2010 1:16 PM (GMT -7)   
Hi Cats_eye,
 
Your concerns are normal.  My daughter has been in remission since her resection in February, 2005.  She has been on Imuran as a maintenance drug.  She feels fine most of the time and is living a normal life.  We've had some scares, but have been lucky.  Actually, since she has Crohn's I know we react more to GI issues than we would if she didn't have it.  After all, even people without Crohn's have GI issues at times.  She does watch her diet somewhat in that she doesn't eat high fat foods and eats two salads a day.  That's where Crohn's is very individual because some people can't eat fiber but she feels she needs it.  Her GI monitors her fairly closely.
 
I hope that your resection will also put you into a long-term remission.  Like I said, your fears are normal.
 
Please feel free to ask questions and to vent.  I know resection surgery is very scary.
 
Debbie in Chicago

cat_eyes
Regular Member


Date Joined Jul 2009
Total Posts : 24
   Posted 5/18/2010 9:27 AM (GMT -7)   
Embarassing question, but I was wondering if anyone has any tricks on releaving gas, I think that's one main cause of my pain....?

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/18/2010 10:37 AM (GMT -7)   
Walking really helps me. I don't know why but when I have alot of gas I start walking around the house or office (wherever I am at the time) and it seems to help me burp or fart it out. Also, gas X helps some too. Good luck!
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"*
New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, December 09, 2016 2:45 AM (GMT -7)
There are a total of 2,735,214 posts in 301,284 threads.
View Active Threads


Who's Online
This forum has 151388 registered members. Please welcome our newest member, ebinease.
186 Guest(s), 3 Registered Member(s) are currently online.  Details
tidalmouse, magoo2, NiceCupOfTea


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer