For those of you who have has small bowel resections.

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debilitated
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Date Joined Jan 2010
Total Posts : 448
   Posted 3/3/2010 5:42 PM (GMT -7)   
I think I am almost confident enough to make this decision. I pretty much have no choice in the long run.

Does anyone regret it?

do you wish you did it sooner?

Please fill me in on what to expect. Laproscopically possible.

Thanks so much.

mirowpl
Regular Member


Date Joined Nov 2009
Total Posts : 380
   Posted 3/3/2010 6:07 PM (GMT -7)   
hey there. I had my surgery 6 weeks ago. I wish I had done it when I had my first blockage this past fall. I was "fixed" with predisone and released 6 days later only to be in a constant battle with stomach pains, nausa, "D" and so forth. GI put me on remicade but i only got worse. They finally dt another ct scan to realize that i had scar tissue. Interestingly, they were looking for 2 strictures during suregrery, but found 3! no wonder they said

now what i have gone through...i wish i knew about as well

1) I was open due to other issues. However, the Surgeon said open takes less time and makes it easier to move around. I had just a 6 1/2 inch incession with not staples or stiches!! Obviously i have stiches in the inside. i was only in the operating room for about 2 hours.

2) I got an epidural...that was great for pain, but will need a cathiter

3) when epidural was removed on 3rd day, bowels woke up. one thing, I wish i knew this. I am a male, the epidural was secured with an 10x10 piece of surgical tape. with my back hair, it took the nurse 45 mins to get the tape off!!! I wish I asked them to shave my back before the placed the epidural!!!!!

4) I had a major bleed out on the 4th day. surgeon said it was very common. it stopped after about 6 hours. But boy was I sick, the nursing staff was great. they checked on me every 20 mins, made sure I had plenty of nausa meds in me and i was comfortable. they said gastro surgery patients have it the worse of most surgery people as the bowels keep working.....

5) went home on day 6

6) did have lots of pain, especially when moving, used pain pills to help as needed, but especially at night so i could sleep.

7) 2 1/2 weeks after the surgery i had another bleed out....this time for 8 hours. was re admitted to hospital. they only monitored my and my blood work. bleeding stopped so they did not do anything, although they had 2 different plans ready to go depending on what happened. I am not telling you this to scare you, but to be honest about the surgery risks. My surgeon meet me at the ER so he was fully aware of everything and was the one to put me back in hospital.


I am still trying to get my hemoglobin numbers back up. This week they were 9.2 (down a bit from last week) I need to be above 12 or 13. this is making me weak as well

8) I have now gone back to work this week working 1/2 days. I did do some work from home while recovering. But, the biggest issue is weakness and being tired. your body is still healing so you cannot over do things

I hope this helps. like i said I wish i had this done last fall as I endured 5 months of awful sickness before we fixed things (for the time being...make sure you get new meds from GI to help keep te CD at bay as long as possible. Good luck

pimfram
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Date Joined May 2009
Total Posts : 506
   Posted 3/3/2010 6:26 PM (GMT -7)   
Definitely do not regret it, everything's been great since then, essentially what everyone without CD would call a normal life. I probably should have had it done at least a couple weeks sooner, since I was basically unable to eat anything for about 2 or 3 weeks prior to surgery. I had mine 10 weeks ago via open surgery; incision is about 3 inches long. Surgery lasted around 2.5 hours. Got out of the hospital on day 5, probably could have gone home sooner. Had catheter for about the first 24 hours. Things hurt quite a bit the first few days, but Dilaudid seemed to help quite a bit. Was changed from IV pain relief to Percocet on day 3 (I think) and it seemed to be as good as Dilaudid. Kept on Perc for about 2 weeks after surgery, and still have some pills left over in case I have pain in the near future. As you probably know, walk early and often. I was walking about 12 hours after surgery. I'm a 24 year old male, if that helps with anything.
Diagnosed with CD July 2007
Currently on Remicade, Imuran, probiotics, folic acid, multivitamin.
Resection December 2009

Amor fati - Nietzsche


Becky77
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Date Joined Dec 2005
Total Posts : 1768
   Posted 3/3/2010 6:38 PM (GMT -7)   
Both my surgeries were open. The first I didn't have a choice, but the second I went along with willingly, and I don't regret it at all.

Both surgeries I was home in about 5 or so days. I don't know how long each surgery lasted. I had a catheter until about 12 hours after when I got up to walk. I had an NG tube (the tube goes in your nose and down to your stomach to keep your intestines from working the first couple days after surgery) for about 3 days. Both the NG tube and catheter were in both surgeries put in while I was asleep for surgery, which I would ask for so you don't have to remember that part. I was on a morphine pump the first few days, then switched to percocet. Once I came home both times, I only took pain meds at night.

My surgeon is adamant about getting up within 24 hours of surgery, and the nurses make you walk around every couple hours, which I think is why I healed and the pain went away so quickly. After my second surgery, I was back to work after 2 weeks (on limited work duty-no lifting, etc.).
Becky

32 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, Coumadin


medchrt1
Veteran Member


Date Joined Sep 2005
Total Posts : 517
   Posted 3/3/2010 6:51 PM (GMT -7)   
same here, first was a foot of staples second had sutures and glue...so cant comment on the lapro, but if you want less scar its obvious way to go. I am not on meds and Im somewhat sane now, lol.

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 3/3/2010 6:58 PM (GMT -7)   
I shouldn't have waited to have my resection. Long story and won't go into it here yet again. But I sure didn't and don't regret it! My surgery was open abdomen, probably a good 6 1/2 inches long - but - they got a good look at everything and I didn't have the horrible gas pains so many get after laparoscopy. No NG tube, instead I had a tube coming out my side. The minute they let me up to walk I was up and walking. I wanted to go HOME! I had a special event coming up a month after my surgery I was DETERMINED I was gonna go to. I walked the halls as much as I could, pushing my IV pole and pump. Back then they kept you in hospital until your first BM so I was in hospital 10 days total (before and after). I don't remember when I went off pain meds but it was well before being released and I never needed any at home. I was weak but I felt GREAT! I had forgotten what it felt like to feel normal after 2 1/2 years of nausea and pain and vomiting and blowing up like a balloon.

AND I was blessed w/a 20 YEAR REMISSION. Since its return its been pretty mild and has responded well to medication. God bless Pentasa and Imuran!!


My computer says I need to upgrade my brain to be compatible with its new software.


Ashworthml
Regular Member


Date Joined Jan 2010
Total Posts : 222
   Posted 3/3/2010 11:21 PM (GMT -7)   
My story is similar to bar77 for my resection. I was in extreme pain for over 2 months and lived at the emergency rooms before hand crying out for morphine for the pain, so I dont regret having the surgery.I was walking around as soon as I was able to in the hospital ,I'm a firm believer that the quicker you get up the quicker you are 'back to normal'. I was off work for 6 -8 weeks and they opened me to the surgery and had quite alot of stitches and was unable to drive for 6 weeks but no more going to the emergency rooms in a hurry!
Obviously I still have flares and up until now have had chronic diarrhoea due to the resection but I would rather live with that than what my life was like before the surgery.
I have managed nearly 3 years without any huge issues or major flares,but thats better than being in immense pain and vomiting for months on end!
Good luck and hope it works out for you.
Michelle 40 years old
Diagnosed with CD 2004 (undiagnosed correctly +- 3 years, wrongly diagnosed with IBS)
Bowel resection 2005
medication: pentasa 500mg , Co-codomol 500mg/32mg codeine
loperamide 2mg (prn - take as many as 10-20 a day)
calcium tablets, multivitamin tablets, Omega 3
Ferrous sulphate(anaemia)
levothyroxine (thyroid)
questran light (3 sachets/day), 3 monthly B12 Injections


debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 3/4/2010 12:33 AM (GMT -7)   
Thanks for all the responses.
Heres the major things and maybe some of you can help me answer them.

We all have major pain tolerances but I hate feeling like i dont have control of my mind or thoughts which is why i dont want to be doped up all day. I have and am at the moment on fentanyl patches. Those i can function on pretty well but make me a little tired.

I also don't want to experience the catheder etc.. etc.. i dont know all the little other things they need to do just bother me.

ozonehole
Veteran Member


Date Joined Dec 2006
Total Posts : 559
   Posted 3/4/2010 1:08 AM (GMT -7)   
debilitated said...

I also don't want to experience the catheder etc.. etc.. i dont know all the little other things they need to do just bother me.


I didn't think the catheter was a big deal. They put it in place while you're unconscious. Taking it out is no fun, but pain only lasts a couple of seconds, and you'll likely be on pain medication at the time anyway. I've had 3 resections, no epidural, so catheter came out on the second day after surgery.

The worst thing is the NG tube, in my opinion. It has to stay in until the bowels start moving. That is typically 3 or 4 days. You can help the process along by getting up and moving as much as possible. Likely, your doctor will tell you to do that: do not stay in bed any longer than necessary.

I absolutely agree with the others that the surgery was worth it. Indeed, on the third surgery, my life depended on it. Without surgery, I would have died from a completely blocked intestine.
Crohn's since 1988
3 resections


Ashworthml
Regular Member


Date Joined Jan 2010
Total Posts : 222
   Posted 3/4/2010 1:19 AM (GMT -7)   
I think I only had a catheter in for a short time as I was determined I was going to get up out of bed and go to the toilet. I think the same as ozonehole, the worst was the NG tube, but mine came out after a couple of days, they said it had to run 'clear' whatever that means and after a couple of days my bowels started moving anyway. I did have an epidural with pain relief and I did need it for the first day or so, but you can ask them to change the dosage you are getting, and obviously depends on yourself to how much pain you can take whether it is on a higher dosage or not. I only had the epidural pain relief for 3 days and then let them taper it until eventually I didnt have it.
But the sooner you move around the better, just take it easy obviously!
Michelle 40 years old
Diagnosed with CD 2004 (undiagnosed correctly +- 3 years, wrongly diagnosed with IBS)
Bowel resection 2005
medication: pentasa 500mg , Co-codomol 500mg/32mg codeine
loperamide 2mg (prn - take as many as 10-20 a day)
calcium tablets, multivitamin tablets, Omega 3
Ferrous sulphate(anaemia)
levothyroxine (thyroid)
questran light (3 sachets/day), 3 monthly B12 Injections


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 3/4/2010 4:47 AM (GMT -7)   
What if you are single and have no support at home?
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…


Brad P
Regular Member


Date Joined Feb 2010
Total Posts : 51
   Posted 3/4/2010 5:52 AM (GMT -7)   
I had no choice back in Sept 2008 as I had a tumor in my small bowel. They removed 2ft encompassing the tumor and another 2ft that was bad from Crohn's. After surgery I had not felt as good as I had in years. I was able to eat 2x as much in a day than before. Food was able to get through me with ease. I gained 30lbs in 2 months, most of which was what I lost due to being sick with cancer but did gain extra beyond my normal weight. I had no more bloating, distending, bowel noises. I thought it was a miracle. I figured the cancer was a blessing in disguise given I was feeling so good and assuming the cancer was gone for good.

But then the chemo started (precautionary) that December and ended in May and took a bad toll on my bowels. Although I've had periods of feeling good since May, I have not felt as good as I did that Fall of 08 after surgery. If I didn't have to take chemo, would I have continued to feel that good? I'll never know. I just know ow I am battling a flareup of sorts or some other issue in my stomach/duodenum where the symptoms are similar to that when I was on chemo.

I wish I had the surgery sooner. I may have avoided getting cancer. I think GI's don't consider surgery enough, especially for veteran patients.
CD since Fall 1987
Small Bowel Cancer - Sept 2008
Surgery to remove tumor - Oct 1st, 2008
Chemo - Dec 2008 to May 2009
Jan 2010 - NED


joy47
Regular Member


Date Joined Feb 2010
Total Posts : 75
   Posted 3/4/2010 6:17 AM (GMT -7)   
Ive always felt much better after surgery. The bad part removed. Ive been opened up right down the middle. Since the third surgery Im now more cautious about surgery. I only have so much small left. I was told short bowel is what I will have if i have anymore surgeries and they say im to young to go that route unless there is no other allternitive. So I guess what im saying is exhaust all possibilities before you have surgery. For me surgery was life or death pretty much. Hope this helps.

mirowpl
Regular Member


Date Joined Nov 2009
Total Posts : 380
   Posted 3/4/2010 6:18 AM (GMT -7)   
i did not have a ng tube. my surgeon said they dont use them anymore unless there is a problem. he said their experieince shows that the rate of issues were the same with or with out the NG tube. so they only put it in when the patient show signs of needing one.

Also, i am a big fan of the epidural. once it came out, i was on morphine pump for a few days, tapering it down to -0- when i left. it certainly made me more sleepy and disorineted than i was with the epidural.

BTW, I agree with Brad, GI's tend to advoid the surgery. However, newer evidence is pointing to doing it earlier greatly improves quality of life. i gave mine an article published in one of the med journals last spring about this. good luck on wht every you decide. remember it is your decision.

Brad P
Regular Member


Date Joined Feb 2010
Total Posts : 51
   Posted 3/4/2010 6:29 AM (GMT -7)   
Hey Miro....I asked my GI about surgery in the past and was told it would have to be a last resort and most of my bowel would have to be removed. Well, the latter was proven false because I only lost 4 ft with plenty to spare and after surgery, my bowel habits actually improved. I was told the rest of my bowel looked in decent shape. But why leave it to a last resort? as you have somewhat pointed out. Patients quality of life is on the line. Oh to have my time back :(
CD since Fall 1987
Small Bowel Cancer - Sept 2008
Surgery to remove tumor - Oct 1st, 2008
Chemo - Dec 2008 to May 2009
Jan 2010 - NED


debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 3/4/2010 9:13 AM (GMT -7)   
you guys are really awesome to respond. Makes me feel better. Mirowpl, I heard about that,.. I think they used an NG during my first Scope 9 years ago to get the stuff in...

i hear they dont do it much anymore.

MMMNAVY, thats sad.. Did that happen to you? No support would suck wouldn't it.

debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 3/4/2010 9:15 AM (GMT -7)   
Should I try my Last option which is methotrexate, and have another Small Bowel Follow through done to see if it's changed?

Brad P
Regular Member


Date Joined Feb 2010
Total Posts : 51
   Posted 3/4/2010 10:41 AM (GMT -7)   
I had the NG tube and it was the worse part of the whole process. I eventually disconnected myself from it a week after surgery to see if the bile would make my stomach upset (my bowel was healed enough at this point). After 24 hours without a problem, I had them remove it. It was awesome haha

Also, after surgery force yourself to get mobile. On day 1 after surgery, I didn't move much. I may have sat up. Day 2 I stood up, walked a short distance. Day 3 walked further. Day 4 showered. Day 5 reorganized my hospital room! After that I did a lot of walking to stimulate the bowel and get it working again. I walked up and down the corrider, to different floors etc.
CD since Fall 1987
Small Bowel Cancer - Sept 2008
Surgery to remove tumor - Oct 1st, 2008
Chemo - Dec 2008 to May 2009
Jan 2010 - NED


joy47
Regular Member


Date Joined Feb 2010
Total Posts : 75
   Posted 3/4/2010 1:59 PM (GMT -7)   
This is joy47 I didnt know that about the ng tube. I always was told it was for the bowel to rest. Im always put on it when surgery is a must. But come to think of it they havnt put me on it even this last time i was in the hospital. Interesting info. good luck if you have surgery Ill pray for you to have a speedy recovery. wink

Brad P
Regular Member


Date Joined Feb 2010
Total Posts : 51
   Posted 3/4/2010 3:16 PM (GMT -7)   
joy47 said...
This is joy47 I didnt know that about the ng tube. I always was told it was for the bowel to rest. Im always put on it when surgery is a must. But come to think of it they havnt put me on it even this last time i was in the hospital. Interesting info. good luck if you have surgery Ill pray for you to have a speedy recovery. wink


Yes, the NG tube for me was to allow my bowel to rest. It needs a few days to heal properly.
CD since Fall 1987
Small Bowel Cancer - Sept 2008
Surgery to remove tumor - Oct 1st, 2008
Chemo - Dec 2008 to May 2009
Jan 2010 - NED


flowery
Regular Member


Date Joined Jul 2008
Total Posts : 440
   Posted 3/4/2010 3:34 PM (GMT -7)   
Hello, hopefully this will help you make a decision.
I had a small bowl re-section done in 06 after diagnosed with Crohns 05' after a complete obstruction. It took them a long time to diagnose me but even after being on pred, imuran, and asacol a whole year... I kept loosing weight and having lots of pain. I decided on surgery vs. trying harder med's thing that might not work later. Sometimes you have to weigh out your time vs. quality thing. I was 37, still an active Mom and wanted there to be time for me to try harder meds down the road.
I've had quite a few surgery in my life and this is some of what I've experienced. Just opinions though..in the long run you have to make your own choice:)
 
Lapro is AWESOME...as long as they can actually see what they are doing! I'm not saying all this to scare you but to inform you that once they get "in" there you want them to be able to SEE everything they need to clearly. Trust me! If they are leaning in this direction, let them do it!
 
As far as a cath... they don't really bother me.  Yes, they do usually put it in when your sleeping...but if they don't just take a deep breath and relax and you won't even notice it! Maybe it's because I'm a girl. ?? Matter of fact when they take mine out I'm a bit bummed cuz' it's alot of work to get to the bathroom when your weak. Just enjoy being able to rest when you need to.
 
If it's a standard re-section you probably won't get a NG tube...so no worries.
Pain med's work great after the surgery and you usually can start tappering with in a few days.
Usually get up and walk with in hours of coming back from recovery. 
 
But, one thing about my re-section that I want to share again..to inform you...and this is VERY rare..but mine came apart about 8 hours after I was wheeled back to my room. I had gotten "bleed outs" What does this mean exactly?....Well it's NORMAL to go~ blood~  after you have a re-section. Usually it's darker..like old blood. Nobody EVER told me this in my pre-op visit!!!! So when a person see's blood it's just natural to get scared.  Eventually, the "bleed out" gets less and less.
Unfortuanatley, mine got...Brighter with more and more!!! I went from a 14 hemo 6 in a matter of a few hours and passing out. They rushed me to ICU and tried to figure out what was going on.
They put and NG tube in ICU while I was awake... not fun...but, survived it:)
When they did the re-sectioned the first time they just didn't connect it to healthy tissue. They ened up having to do surgery the second time taking out 8 more inches. Second time it WASN"T Lapro...it was open. The incision wasn't that big..maybe 6-8 inches.
Had to be bed ridden for 48 hours after the second surgery Dr.'s orders! I think they just wanted to give it time to heal without me moving around. Had the NG tube in for 3 days:(
I agree with everybody else. Tube was the least amount of fun. I had to make friends with it though because I thought I was gonna go out of my mind and pull it out. So, I just told myself over and over again I like it...weird I know. ha
Also wanted to share... because I had just moved into a new state/community I wish I would have asked around for the BEST Surgeon. My  Surgeon Dr. did come into my room after the nurse notified him of this "over bleeding" going on. He stood at the end of my bed and kept telling me it was normal to bleed like this and didn't really take my concerns into consideration.  
Looking back he DID looked concered. Just couldn't maybe admitt that surgery went bad. He was a very young Dr. not alot of experience under his belt. Idk...just wish I would have been a squeaky wheel and asked for the BEST experienced Dr.! It couldn't of hurt. Second surgery was done by someone else more experienced.
Even after the whole ordeal and 3 unites of blood... I am glad I did it!
I still feel better than before!!  I do have some issues with vaulves that they took out and I have frequent D. But, not as much pain. I kinda dig the NO pain thing. Always goin' for NO PAIN! lol.
I've been in so called remission for 4 years. Good luck!
 
 
 
 
Flowery
 "Get busy living or get busy dying"
Dx in 2005 with Crohns after a Hysterectomy. Re-section in 2006...came apart so got to do it again! Frequent Kidney stones and Shingles... a new present as of 08-09 Diabetes Type 2. Total of 12 surgerys.
Imran, Asacol, Colestid, Bentyl, Lamotil, Paxil, Nexium, Probiodicts, Vit D, Folic Acid, Lots of Potassium, Fish Oil, up to 6 Immodium a day. Oh, and one Giant Pill holder!
 
 
               
                        


Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 3/4/2010 3:52 PM (GMT -7)   
Mine was laproscopic, no NG tube. Catheters are no big deal, you hardly know it's in and they take it out as soon as you are able to get up to go to the bathroom. Plus, if you can't get up, the catheter is a million times better than trying to scoot onto a bedpan after abdominal surgery.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 3/4/2010 6:18 PM (GMT -7)   
Debilitated,
I am in the same boat as you, I know it is coming. I am not much older then you and both my parents are dead and I have to go thru the VA hospital system, which is not great and I have to travel around 400 miles round trip for my GI/hospital care. I am single and live alone (due to the severity of my disease), my geographically closest family (which has a newborn and so not able to help much) is more then an hour away and so needless to say I am concerned. For example, my 23 year old brother is flying in from Connecticut to take me to my endo and colonscopy right before spring break.
Navy
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 3/4/2010 6:24 PM (GMT -7)   
Yes it's tough. I REALLY REALLY want to see if methotrexate will do anything Before I do surgery. Maybe just to try to preserve things and outlast every decision first.

i have The Medication Next to me but Haven't been given clearance yet after we decided between surgery. Still trying to convince them to RE-DO the small bowel series in a few months after Mehotrexate if it works.

Note: I have never had a bowel obstruction. But supposed 40-60cm of narrowing.

Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 3/4/2010 6:42 PM (GMT -7)   
Navy
I live by myself. Granted, my family is close to me if needed, but by the time I got home from the 2nd surgery, I was ok to do what I needed to do. In fact, I drove myself to my follow-up appointment a week and a half after surgery. It would just take extra planning to make sure you have everything you need at home once you get there...like filling prescriptions ahead of time, making sure you have safe foods, etc. It can be done though.
Becky

32 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, Coumadin

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