Need some advice... I need surgery apparently :(

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

Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 2/3/2010 11:27 AM (GMT -7)   
Hey guys,

So today I went and saw my new doctor.. He's the head of our Crohn's research facility here and probably the best Crohn's doctor in the city. I had a CT enterography done a few weeks ago after I had been having a lot of pain again. Now, med wise, I'm on Pantoloc, Entocort, Cipro and Flagyl. My doctor called a few days ago saying that I needed to go see this new doctor today and that my test results weren't good, so I was pretty nervous. Today I found out that I actually perforated, and I've got abscesses and fistulas. All very scary to me. I need to have surgery ASAP (I'm seeing a colorectal surgeon this week for a consult). I'm really overwhelmed because I knew that surgery may be a possibility, but I never imagined that I actually perforated and that I'd need it so soon, I was expecting that I'd have at least 6-9 months to prepare myself mentally beforehand. The doctor said that they should be able to go in through my bellybutton to do it though, which is good, because I was really worried about scars.

I have a few questions for those of you who have had resections. How long will I probably be in the hospital for and what's the recovery period like? How bad is the pain after the surgery? What are the odds that they'll have to switch from doing it laprascopically to completely opening you up?

I'm very overwhelmed right now. The funny thing is that I feel totally fine. I never even imagined that I perforated. I was worried that it could happen, but I always thought that I'd be in so much pain that I'd be in tears and have to go to the hospital. I never had that. Definitely a lot to take in in one day, I feel so bad about having to go and take so much time off work and I'm worried that I may end up with a big scar. I know I should be more concerned with my health, but I just find it so hard to believe that I'm in such bad shape when I'm still managing to function relatively normally.

Angela N
Regular Member


Date Joined Jan 2006
Total Posts : 82
   Posted 2/3/2010 11:52 AM (GMT -7)   
I had an obstruction in my small intestine last year. My stomach had been hurting off and on for a while...I would come and go. Then I started getting fever off and on, and no appetite at all. So I did go in and had to have surgery almost immediately...A week later I had surgery...I was in the hospital for 7 days and they had to cut me wide open..(sorry don't want to scare you) I was cut from the top of my stomach to the bottom of it....Believe it or not I didnt have much pain after surgery....they gave me an epidural for the pain...so I never felt nothing much at all. When they took me off of the epidural i was then okay also....my stomach was sore where the incision was but not to bad. I hope all the best for you.....
Diagnosed with Crohns 15 years ago...After my sugery 15 years ago I havn't had any flare ups until now...I am currently taking Pentasa and the Cimzia shot..I am 43 years old..


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 2/3/2010 11:53 AM (GMT -7)   
Ok this might be a dumb question but are you sure you should not be at the hospital right now? Really 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…


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/3/2010 12:10 PM (GMT -7)   
Aww Valerie sorry to hear you are headed for surgery. I had 2 open resections so I can only comment on that. I was in the hospital for mine almost 10 days for both, but thats because I got an infection in my incision both times (not common). But from what I have heard for the laproscopic surgeries its about 3-5 day hospital stay with about 4-6 weeks recovery time. I sure hope you are able to have it lap as it is much easier recovery. Hopefully, the one good thing to come from the surgery is you will have a long long remission. One big tip is to walk as much as possible afterwards, it helps to wake the bowel back up. Good luck and keep us posted. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
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"*

pimfram
Veteran Member


Date Joined May 2009
Total Posts : 506
   Posted 2/3/2010 12:42 PM (GMT -7)   
MMMNAVY said...
Ok this might be a dumb question but are you sure you should not be at the hospital right now? Really concerned about you!

I'm thinking the same.
Diagnosed with CD July 2007
Currently on Remicade, Imuran, probiotics, folic acid, multivitamin.
Resection December 2009

Amor fati - Nietzsche


hld4good
Regular Member


Date Joined Jan 2010
Total Posts : 193
   Posted 2/3/2010 1:04 PM (GMT -7)   
I am concerned, too. The Moderator has a good point.
Age 58, Crohn's since age 21
3 bowel resections, 1980,88,95
1 fistula repair, 2005
probiotic
digestive enzymes
L-glutamine powder 3 times a day
sublingual B-12 and B complex
2 T. cod liver oil
2 tsp. tart cherry juice concentrate
Multiple vitamin, 2,500mg vit. C, 1,000mg calcium mag.


Sir WipesALot
Regular Member


Date Joined Nov 2009
Total Posts : 42
   Posted 2/3/2010 2:30 PM (GMT -7)   
I just had my resection on Friday the 22nd. It was laparoscopic with hand assist, meaning they used the scope and they made an incision of about three inches to take 10 inches of small intestine.

I was out of the hospital the following Wednesday, so five days. In the meantime, I had needed a blood transfusion, since they gave me thinners to prevent clotting and I was bleeding a whole lot out the ol' rectum. When they stopped the thinners, the bleeding slowly subsided.

The pain was bad for me for exactly a week, which is what my GI told me it would be. I was able to switch over to Tylenol only from Perc with Tylenol on Saturday the 30th. I get alternating pains. Some from the incision itself, some from gas moving around, and some from whatever they messed around with inside. I'm still on Tylenol, but only about every twelve hours.

It's not been too terrible an experience, and I went from not being able to sit back and stand up without a lot of extra effort on the day I came home to being able to do so with only moderate effort the next couple of days. It's still kind of uncomfortable to sit up straight, but part of that is the staples, which come out tomorrow (yay!).

Each day I have seen improvement in moving, with my stomach muscles recovering much faster than I expected.

Forget mental preparation for months and months. You're going to get to a point where you just want it overwith, the sooner the better. Hope this helps. Best of luck to you.
2.5 mg Prednisone, 3000 mg Pentasa, Prilosec... probiotics......

DX May 2004
34 YO M


Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 2/3/2010 3:19 PM (GMT -7)   
Thanks guys. I'm glad that I should be able to get out of the hospital pretty fast, I was expecting a week so 3-5 days is better than what I was thinking. I know at this point that I really do just need to get it over with, I was going to go into my appointment today fighting to not have surgery, but knowing that I'm perforated I know that I really need to just do it as soon as possible. I think that the point of me being in the hospital for this has came and gone, I'm perfectly fine now, I don't even have any pain whatsoever, I guess I need to just keep taking my antibiotics and being careful until then. It's just weird because I really can't even pinpoint when it could have happened...I only ended up on Cipro in the first place because I go a UTI (I noticed I felt better and asked my doctor to give me Cipro and Flagyl). I don't even want to think of how sick I could be if I wasn't on them right now, it's funny because it's a bit of a blessing that I got that UTI. Now the only problem is that my new GI is worried I may have another fistula leading to my bladder that might have caused the UTI in the first place.

I'm supposed to check in with my doctor and his nurse every day until I get this over with. I have to see him again 2 weeks from now, go for another ultrasound to see what's going on, and go see the surgeon. I'm in good hands I guess, they told me that if I have any pain whatsoever, I need to come to the hospital right away.

Hopefully after this is over with I'll be able to be up and about relatively quickly. I know I'll need a couple of weeks of rest, but I don't want to be home forever either.

Has anyone heard of them going through the bellybutton before? I was kind of expecting a small incision (or a few) on my stomach, but the doctor was mentioning my bellybutton. Is this common? It sounds great if they're actually able to do it that way. haha

firecracker1
Regular Member


Date Joined Apr 2007
Total Posts : 208
   Posted 2/3/2010 3:30 PM (GMT -7)   
You poor thing. I know it is scary, but things will turn out ok. I had to have a small bowel resection (open surgery) 6 years ago. I had perferated in my small intestine and had two abscesses. They immediately put in a CT Scan guided drainage bag. Two weeks later they did the surgery and I was in the hospital for 6 days afterwards. I was feeling so sick when they found the perferations. I wasn't able to eat any solid foods what-so-ever and had a fever. After the surgery you'll need to be on clear liquids for a few days. My surgeon, for some reason, had me eating pizza a day and a half later. I did not want to eat at all. I started vomiting 2 hrs after each meal. They then found out due to swelling at the resection sight I had a blockage. Another dr told me it was because I ate solid foods too soon. I am sending good thoughts your way and keeping you in my prayers. I know it will all turn out ok. There will be pain after the surgery, but in a few weeks you'll feel better than you have in years.

newfoundsun
Regular Member


Date Joined Nov 2009
Total Posts : 145
   Posted 2/3/2010 3:32 PM (GMT -7)   
Newbie question here:  how do the find out you are perforated, and is that the same thing as having fistulas?
 
turn 
newfoundsun
 
http://www.newfoundsun.wordpress.com/  (my blog about this journey I have just started)
 
CD diagnosed 11/12/09
Seeing a Naturopath and modifying my diet, so far


Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 2/3/2010 4:30 PM (GMT -7)   
Perforated is when the disease causes a hole in the intestines...where food can actually leak out of the intestines into the abdominal cavity.

I was in a similar situation when I was diagnosed. I was perforated, had an abcess, and my appendix had ruptured. The only reason my surgery was truly emergency was because my bloodwork indicated an infection, and they were worried that I had peritonitis (which is when the abdominal cavity has an infection in it, and can be deadly). Once I was in the hospital, I was like you, and actually felt fine. I had nurses walk in expecting to see someone really looking sickly, but I didn't...though I was very underweight for me. What was explained to me is that where there is a perforation, your body can create kind of like a scab and seal itself off, so your intestines can pass food normally. The pain comes when the "scab" tears off. I was in pain on & off for months before I was finally sent by my PCP to a GI and sent to surgery. Maybe the dr knows you have perforated, but that it is sealed off and not leaking?? That would be my only thought as to why they didn't rush you in to the hospital.

It's almost better, in my opinion, to not have tons of time to think about surgery. Both of mine were done within days of even thinking about it, and I never had a chance to overthink things. I just dealt with whatever happened. I did go to my surgeon at one point and for some time thought we might plan a surgery, and I was so stressed in the time I had to consider it. It didn't end up happening because things "fixed" themself, but just in the few weeks of anticipating surgery, my stress level was sky high.

Good luck, and let us know how things go!
Becky

31 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D, sublingual B12, Coumadin


Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 2/3/2010 6:07 PM (GMT -7)   
Thanks Becky, your explanation explains a lot. I didn't know how it worked with scabs and stuff, I think I may have actually perforated over a year ago then when I got diagnosed. I did a bowel prep and I thought I was going to die because of the pain, it was the worse I've had, I was on the ground shaking and sweating and throwing up constantly and I was practically screaming from the pain. I didn't even go to the hospital, I was in so much pain that I thought I would die before I got there LOL. I didn't think it could've been that if it was so long ago, but I guess maybe that it keeps reopening and healing over and that's what's going on when I'm having my pain. I don't think it's leaking now, which is why I'm not in the hospital, but the Cipro and Flagyl have helped me a lot which means that a lot of my pain was coming from some sort of infection I guess, most likely the abscess and stuff though. On the scan he said that there was air in my abdominal cavity (which is how they can tell that I perforated) and I do have some fluid buildup, but I'm guessing it probably isn't too bad since I seem to be doing OK.

I'm glad to hear that everything turned out OK for you, it's reassuring to know you went through something similar. I really want to get this consultation over so that I know exactly what's going on. I wish that this would just heal itself with medication but the doctor seemed pretty sure that no medication will fix this. At least now I learned my lesson, and I guess hopefully after the surgery is done I'll get put on the right medication to prevent this from happening again, or at least hopefully for a long time.

Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 2/3/2010 8:23 PM (GMT -7)   
Along with the advice of your Dr. I'd recommend taking your temprature 3 or 4 times a day. If your temp goes up get to the hospital as your perforation could be leaking nasty stuff into your abdomen and causing an infection.Val keep us informed and good luck to you. Rob
Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.


Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 2/4/2010 3:18 PM (GMT -7)   
So I have my consultation with the surgeon tomorrow morning. I'm not sure when the surgery will be yet, but there is a very real possibility that they may just admit me tomorrow and do it right away. I'm really freaking out. Here's some questions I have...

Do you get a nasogastric tube? If so, does it hurt when they take it out? lol. I'm so worried.

I also heard they don't let you wear even nail polish or anything, is that true? I'm the type of girl that always wears makeup (lol I know it's bad that I'm thinking about that), and I don't really like the thought of not being able to wear it when people are visiting me and stuff. Should probably be the least of my worries, but it's a thought I've been having haha.

Also, I've got my belly button pierced. I'm doubting I'll be able to wear my bellybutton ring while I'm recovering...right?

Also, do you need a catheter or can you walk to the bathroom yourself?

Anddddddddd, how tired will I be post-op? Will I be sleeping most of the day or bored out of my mind? LOL.

I talked to the HR manager at my job today, and they gave me all of the disability forms and told me not to push myself too hard to come back to work. They told me not to worry about work and that they just all want to see me get better. I know that that can't legally fire you or anything for a medical condition, but I still needed to hear it from them because I feel so bad about needing so much time off. I was only hired on a permanent basis at the end of October, and I'm still in my probationary period so it really looks bad that I'm having surgery so soon after.

I'll let you guys know what happens at the consultation tomorrow. If I don't post back on here tomorrow, it means I went in for surgery and I'll update this as soon as I get back (you guys can see my scars! haha).

I'm seriously so freaked out right now. I have only had 2 minor surgeries as a young child so this is really scary for me. I've only been to the ER once in my life (just before Christmas), so I'm really not sure what to expect. Since I'm Canadian, I'm not even sure that I'll be able to get a private or semi-private room, but hopefully I'll be able to since my insurance covers it.

I'm making a list of questions to ask tomorrow, if anyone has any suggestions I'd appreciate it. I'm also making a list of things for my family to bring to me if I do end up being admitted tomorrow. I'm going to have to get a portable dvd player, tons of DVDs, and some books to read. Not sure what else could keep me busy, I don't want to bring my laptop because I'm paranoid of it getting stolen. I can also bring a Nintendo DS and my Ipod.

Thanks for your support everyone.

Sir WipesALot
Regular Member


Date Joined Nov 2009
Total Posts : 42
   Posted 2/4/2010 8:20 PM (GMT -7)   
I had a bladder fistula, as well, and woke up with a catheter after my surgery. It came out on day 4. I didn't have any nasal tube.

You need to take off all jewelry. My belly button is still irritated from the surgery after two weeks, and I certainly have no piercing.

You'll probably be tired and sleepy, but also bored when awake. Just concentrate on resting and getting yourself better.

Don't freak out... just have faith that everyone knows what they are doing and you'll be ok. The worst part in some ways is the waiting. Best of luck and prayers to you.
2.5 mg Prednisone, 3000 mg Pentasa, Prilosec... probiotics......

DX May 2004
34 YO M


Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 2/5/2010 2:46 PM (GMT -7)   
Another update - I saw the surgeon today, I don't have an exact date but he said about 2 months. I'm glad that it isn't right away because I'll have a bit of time to mentally prepare myself. Also, the antibiotics really have been helping me a lot - I'm hoping that by waiting, they may not have to take as much out. As it stands right now, I'd have to get my ileum, cecum and ascending colon removed. I'm hoping that some of my ascending colon may heal so that I don't need so much taken out, because it really sounds like a lot to me. He told me that most likely, I will be on Remicade after the surgery. The fistula that I have is between my ileum and my ascending colon, although there may be another going to my bladder so we're going to find out on an ultrasound. They don't know exactly where my abscess and perforation are.

They're actually going to be doing (or trying to do) the surgery with a single incision through my bellybutton. He said that he wasn't sure how big the incision will be, because he said that some people's intestines get to be quite large with the inflammation, so hopefully some of it will calm down so I have the smallest incision possible. He did say that no medication would fix what happened though, and surgery is inevitable for me at this point. He said if I was to stop taking the antibiotics, I would get extremely sick again. I also asked about the nasogastric tube, it's the thing that is worrying me most still. He said that I'll have one in during surgery and it'll be out before I wake up, but after I wake up there's a 20% chance it'll have to be reinserted depending on if I can keep liquids down or not, I guess.

Thanks for all of your support everyone, I feel a lot better now. I'll keep you updated once I find out the exact date.

pimfram
Veteran Member


Date Joined May 2009
Total Posts : 506
   Posted 2/5/2010 7:55 PM (GMT -7)   
NG tube - mine was out when I came to
Cath - had mine for 4 or 6 hours
No jewelry, don't know about nail polish or makeup
I was pretty sleepy for the first few hours after surgery, as well as high as a kite
Diagnosed with CD July 2007
Currently on Remicade, Imuran, probiotics, folic acid, multivitamin.
Resection December 2009

Amor fati - Nietzsche


ky_girl
New Member


Date Joined Feb 2010
Total Posts : 11
   Posted 2/5/2010 11:41 PM (GMT -7)   
My resection was four months ago - I didn't even know I had Crohn's beforehand and I think it was better that way because I couldn't get nervous!

Worst part, hands-down, was the NG tube. I had it for the better part of a week and whenever it had to be unhooked (to walk, go to the bathroom, etc.) I would get sooo nauseated after as little as five minutes. After 3 or 4 days it shifted and was hitting my throat at just the right spot to make me gag like crazy, I had to beg the nurse to take it out but once they did, instant relief.

I was in the hospital for a week, went home for one day, and was back in the ER the next night - they had sent me home with a JP drain and the fluid coming out into it had changed colors, which ended up being because of a fistula at the anastomosis. You'll definitely be very sore, but if it's laparoscopic it probably won't be as bad (mine wasn't laparoscopic, I have a scar about as long as my hand). I was pretty much out of it for the first week, but I remember bathroom activities being extremely unpleasant - I had very little control and diarrhea was awful even for several weeks after I went home. They probably won't let you eat much, if at all, while you're in the hospital, and for a while after surgery you'll probably want to be really careful about what you try to eat. Potatoes and pasta were basically all I ate for a week or so after I got out of the hospital, everything else made me feel sick. Zofran was my best friend.

I went on Remicade the week after my surgery, I've had 4 doses so far and I really like it - the worst part is having to sit for 2 hours getting the IV. Good luck with your surgery, I hope it goes well for you!
Leslie, 22
Diagnosed with CD October 2009
Bowel resection, fistula and 2-week hospital stay, October 2009
Currently receiving Remicade

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 10, 2016 5:25 PM (GMT -7)
There are a total of 2,736,121 posts in 301,354 threads.
View Active Threads


Who's Online
This forum has 151451 registered members. Please welcome our newest member, YoEve.
277 Guest(s), 9 Registered Member(s) are currently online.  Details
wthj53, tickcheckguy, porkysgal, 1000Daisies, rocckyd, Kitkate, sam12, Tim Tam, iPoop


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