has anyone regretted getting a resection?

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MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 4/10/2010 4:45 PM (GMT -7)   
Well it looks like I might be approved for a surgical resection.  Evidently the VA here usually waits until it is absolutely necessary.  I have 2 GI's saying they suggest one.  But part of the issue is that I am very obese, (Lucky me, I get a disease that is suppose to make me skinny...and I got fat) and both doctors said it is probably going to have to be so much out that I will have an open surgery.
 
How long does it generally take for you to recover from an open surgery, Time in hospital, return to work/school?
 
Bear in mind I will not have someone at home with me afterwards...


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) : 4/10/2010 5:48:59 PM (GMT-6)


ivy6
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   Posted 4/10/2010 5:03 PM (GMT -7)   
Does the VA provide any services to help while you convalesce at home, Navy?
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MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 4/10/2010 5:13 PM (GMT -7)   
No, so I have got to figure that out.
 
Not to mention I think the VA might cancel my disablity payments because of my inheritance (but I will not even know until monday)


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…


ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 4/10/2010 5:20 PM (GMT -7)   
Oh, Navy. There are no words, hon. You don't need this.
Co-Moderator Crohn's Forum.

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


ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 4/10/2010 5:31 PM (GMT -7)   
ps. Some things you might like to get in before your surgery, to save on shopping and cooking while you recover:

* enteral food / meal replacement drinks
* miso (sometimes you just need to add boiling water to make a broth)
* UHT milk (has a long shelf-life, so you can get lots in advance instead of having to go to the shops every couple of days)
* tinned fruit, which you can puree up to make your milkshakes. Pears might work well here, as might mango
* cous cous - decide how much you want to eat, put it in a bowl, then pour in the same amount (or a little more) boiling water. Microwave for a few minutes; fluff up with a fork; eat.
* in a similar way, some rice noodles only need to be immersed in boiling water before they're ready to eat.
* jelly / jello
* junket tablets?
* herbal teas - esp peppermint and ginger
* tinned fish - eat with the couscous, perhaps
* paper plates and plastic cutlery, to save on washing up

I'll try to think of some more things before I come online again.

Ivy.
Co-Moderator Crohn's Forum.

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


Roni
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Date Joined May 2003
Total Posts : 2480
   Posted 4/10/2010 5:50 PM (GMT -7)   
I was in desperate need for a resection when I had mine; I was getting obstructions every day and they wouldn't stop. Plus the crohn's had spread so much. The radiologist told me it was a huge confusing mass of disease in there.

I second Ivy, get stocked up on as much safe food as possible. Even cook and freeze some easy to digest dinners. Chamomile and green tea with honey (decaf if u wish) is a must.

After the resection, don't go too crazy eating all the good food you've avoided because believe it or not, you can still have crohn's symptoms that can get worse and worse. Ie: spicy foods, sugar, processed foods, you know the drill...

If anything, a resection is a good way to "reset" your bowels and start all over with healthy food. After my resection, I soooo enjoyed eating salads and veggies and fruit that I had avoided for years!!! It was heaven.

Best wishes!

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 4/10/2010 6:08 PM (GMT -7)   
I've NEVER regretted my resection tho I fought the bitter fight against it and darn near waiting too long!! God blessed me w/a 20 year remission which I am sure has a LOT to do w/my having never regretted having it done. But by the time I caved in and agreed to it even being told that there was a 60% chance it would recur sounded like good odds to me just to have some respite from the nausea, bloating and pain.

VA can reduce your Disability because you inherited some money??? Or its not a VA disability? Good luck to you with both situations, Navy!!!!
My computer says I need to upgrade my brain to be compatible with its new software.


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 4/10/2010 7:31 PM (GMT -7)   
I'm so sorry you don't have the support you need close by Navy. I have never regretted my resections and all three were open. I was in the hospital for less time after each one, probably due to "new" insurance rules, not because I was recovering all that much better. But it was 7 days, 5 days and then 4 days. I did have help at home, but I also had very small children. I could take care of myself, but not them. If you have the things in your house as Ivy suggests and some friends/neighbors who can perhaps help with some light shopping for fresh food you should be OK. I was weak but doing pretty well within a couple of weeks, back to work in 4 weeks after one and within 6 after the others, but I was doing office work, nothing physical.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/11/2010 7:26 AM (GMT -7)   
I don't regret my surgeries at ALL!! I was so sick of puking and feeling nauseaous all the time (I am speaking mostly of before my 2nd resection as 1st was emergency). After your body adjusts to the changes you will start to feel so much better. I think they have let you go too long as it is, and I think you having surgery will help you to feel soooo much better.

I agree with the above. I think you will be fine on your own at home. Just try to prepare things as much as possible at home beforehand. After my first resection I was by myself and had no problems taking care of myself. And that was with an infection in my incision that required wet/dry packings. I did have a nurse visit a couple of times a week, but that was because of the infection I got, not because of the surgery. With having a planned surgery like you are, you are able to prepare things beforehand and that REALLY helps alot. I ate alot of baked potatoes and chicken. Easy and light things like that.

It took me 6-8 weeks to recover from both my resections. I got infections in my incisions each time (not too common) so my recovery was a little longer than most.

But since my last resection 5 years ago, I am doing really well now. Good luck to you Navy!! Hugs to you!!
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"*

rovin1959
Regular Member


Date Joined May 2009
Total Posts : 159
   Posted 4/11/2010 7:30 AM (GMT -7)   
Hey Navy,I am so sorry you are at that point. I do not regreat the sx. I was alone through it pretty much as you will be. I have a husband,if you can call him that, but he decieded to take an extended fishing trip after I returned home. It will not be easy, but you are tough!!!!

Mary Lynn


Brad P
Regular Member


Date Joined Feb 2010
Total Posts : 51
   Posted 4/11/2010 8:21 AM (GMT -7)   
I wish I had my resection in the Fall of 08 sooner. I would have felt better and could have avoided cancer. I needed one ASAP to remove a small bowel tumor located in an area of bowel that has plagued me from CD for years. While the surgeon was in there, he not only removed the tumor but extra bad bowel from Crohn's. I lost 4ft all together.

The first couple of days after surgery it was hard to move. But take my advice, sit up ASAP, if only for a few minutes, on the day or two after surgery. Then next day get on your feet, even just to stand up for a minute. Then the next day or as soon as you can go for a small walk, etc. Work at getting your mobility back. Lying around in the bed is a slow way to recover. I had surgery on a Wednesday and was walking around by Saturday, showered on a Sunday, and pretty much fully mobile by Monday. The only thing I hated was the bile tube up my nose. My throat was sore and raw after a few days.

I was eating liquid or full liquid diets by the following Wednesday, and then whatever I wanted by the end of the week. I was discharged after 12 days in hospital. A few days home I was eating anything and everything to gain weight back. I had never felt better.

A previous poster was right...your bowel is almost reset.... format c: !!

My BM's were the best they had ever been, and my bowels were operating at peak efficiency!

I am suppose to go back under the blade for a strictureoplasty. I am not expecting the results like above this time due to active Crohn's I have going on.
Regular Member...Veteran Sufferer.

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
March 2010 - Active CD and Fistula in Duodenum


MToronto2
Regular Member


Date Joined Apr 2010
Total Posts : 232
   Posted 4/11/2010 9:11 AM (GMT -7)   
Hi Navy,
I'm so sorry your going thought this.

I waited 15 years, most of that time very sick, until I got a block that I couldn't argue with. I had to have surgery I was 75 lbs and the drugs just didn't work for me.

A part of me regrets not having the surgery sooner, and I was thoroughly disappointed that immuno suppressants don't work for me. Still I did get a 9 year relative remission with the surgery. I had to get a pouch due to surgical complications -- not because of the CD. But I finally got to eat pretty much what ever I wanted. I was pretty much on my own, if not for friends I would have been screwed. Also, my recovery was a couple of years as I had to have surgery the following year to repair an incisional hernia. That went ok, the first time.

My bigger complication was when I got the ostomy reversed, and had an auto-immune reaction to abdominal mesh. Mesh failure is about 50/50, auto immune rejection of it is quite rare, though my doc told me while I was the first he'd seen, I have not been the last.

From my understanding surgery is harder on the overweight and more prone to complications. So they may have to do a midline and insert mesh. Do your research on this, mesh rejection was in many ways worse than my CD symptoms.

Surgery can help, when it gets that bad it seems the only solution. As it did in my case, it has lead to more surgeries, and now surgery for anything poses a real risk to my life.

I have just flared in my gut for the first time in 9 years. I have flared in my skin and tendons in these 9 years, CD attacking other parts of my body.

Recently, through my Rheumatologist, I was proscribe a drug to see if this would help my shoulder issues. As I did my research, I found it is being tested for CD in the US. I started taking it 3 weeks ago and my flare is abating and I am not yet up to the full dose. It's called Low Dose Naltrexone -- I think there are posts on this site regarding it, it's why I signed up here this morning. I am eating again, a week ago I could not eat two days in a row. (It's easy to google look for the org site)

I would be finding out more about this drug before trying surgery, if I were you. You'll know in a month if it's helping, or sooner...Surgery is an option, but it's best to try and make it a last resort, I think.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 4/11/2010 11:23 AM (GMT -7)   
The thing of it is I have been feeling better since my scope last month. I rarely obstruct. Plus my primary problem is the bone pain I have. While the bleeding and D can get bad (not as bad as they were before the scope) the quality of life issues for me is more the pain I am in. That has gotten so much better since it warmed up.
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…


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 4/11/2010 12:18 PM (GMT -7)   
Oh Navy, I wish I had some super words of wisdom. Something that hasn't already been said, but sadly, I really don't
have much to add. I've had 2 resections, the first was an open midline surgery, the second, was laproscopic with incision,
and I have to say there wasn't really much difference, not for me anyway. The recovery time was maybe a little quicker.

You know Navy, regardless of what we all say, at the end of the day, it's your decision to make. If you and your body feel
that you need this surgery. You'll get through it like the trooper you are. If, however, you're a little uncertain, I'm sure your
doctor can allow you a little more time....

I'm also wondering, if it's not you lupus symptoms giving you problems right now. The reason are I say this, is because you say
it has worsened since the weather has warmed up. That's so typical of lupus.

Please know I'm thinking of you, and if you need anything just shout. ((( hugs))) x
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...


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 4/11/2010 12:27 PM (GMT -7)   
Navy, my incision was open abdomen as well. I "lost" the entire day of surgery (first surgery of the morning for my surgeon) and the entire next day. I was up and walking, albeit hugging my pillow to my tummy, and pushing my pump pole up and down the hallway the second day after surgery. I didn't have an NG tube. I pitched a fit about an NG tube so I had a tube coming out my left side of my abdomen instead. WONDERFUL! I had no need for pain medication well before my release. I was kept in hospital 10 days because back then the rule was no release until the first BM. I never regretted the open abdomen surgery. Back then they didn't do laparotomies, of course, but I read about the gas pain after these laparotomies, even if only for one to two days, and I would prefer open abdomen to this day. (Which is a good thing since I wouldn't be a candidate for laparotomy due to my previous surgery). I walked and walked and walked those hospital hallways every day I was in the hospital anxious to get out and go home. The more I walked the stronger I got. And the better I felt.
My computer says I need to upgrade my brain to be compatible with its new software.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 4/11/2010 12:47 PM (GMT -7)   
Thanks for all the advice. It is helpful. Part of this is that the VA is very slow if it is not an emergency, but last fall I was to the point I really wanted it out because I was in the hospital so much, and I felt like crap. But now I feel Better (sorry if I did not say that correctly before), and so I am not sure what to do.
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…


MToronto2
Regular Member


Date Joined Apr 2010
Total Posts : 232
   Posted 4/11/2010 1:22 PM (GMT -7)   
Hi Navy, again.

I posted a note on my experience with LDN in a thread already begun. The good news is that this is a cheap drug -- off patent. There are docs who proscribe it in the US.

I agree with dunny, in the end it's your call.

I would suggest, though, that until you are clear, to let things be. Change of seasons is the hardest for many with auto-immune, in the 15 years I danced steady with it, it was always harder to come out of winter than out of summer. This is not just a Lupus thing. All of us with auto-immune diseases feel the change of seasons.

Hang in there.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 4/11/2010 1:36 PM (GMT -7)   
Unfortunately LDN is not an option for me, due to other issues (orthos). But I appreciate the suggestion.
 
I think I figured out a plan.  If I my disablity payments are ok, then I will go to Mayo and get another opinion.  Might as well get the best if I can afford it.
 
 


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) : 4/11/2010 5:00:51 PM (GMT-6)


Aimee =)
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Date Joined Jun 2004
Total Posts : 1020
   Posted 4/11/2010 5:33 PM (GMT -7)   
I don't regret mine... though I won't be signing up for again anytime soon =) I fought and fought it and ended up having quite a dangerous situation going on that no one could see before cutting into me. You may remember my posts from a couple months ago.

I have 3 lap scars and the open. The open burned alot initially but the lap gas pain was AWFUL. I thought I was going to die. It also really screws up your shoulder and I didn't sleep for a few weeks.

Remember that even once the diseased portion is gone, you can still get your other symptoms. Joint pain is one of my most painful symptoms and my GI warned me that surgery wouldn't fix that - though hopefully maintenance drugs would.

It's kinda fun to "start over." I was in the hospital 8 days. I didn't eat anything for about 4 days. I was walking (slowly/hunched over) on day 2. On day 6 we tried solid foods. My surgeon wanted me to just eat healthy food for a couple of weeks to help aid in healing. Vegetables, brown rice, lean meat, etc. I'll admit that I was eating fast food almost immediately (I had someone sneak in McDonalds even...). I had no issues eating and now I'm chowing down on salads and loads of fresh veggies that I wouldn't touch prior. I did wait about 2 weeks postop to try that stuff.

My digestive system has changed some. I never do get diarrhea but did BAD in the hospital. It was yucky and embarassing but Lomodol fixed it and after a week at home, never had another issue. Now I go more often (2-3 times a day, compared to every 2-3 days) and it takes a long time to "go".

I was fine to stay home alone once I went home. DH waited on me at first but if I were alone, I could do it myself. Church members brought tons of food and that made a huge difference. I wouldn't have been able to stay long and cook. I wasn't even standing upright for a few weeks.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 4/11/2010 6:59 PM (GMT -7)   
Navy, could you hire a walker for yourself if, like Aimee, you have trouble standing upright for long? Walkers often have a padded seat, so you could sit whenever you needed to.

Another thing to consider is your living arrangements at home. Do you have a place where you can sit (rather than stand) to prepare meals, do the dishes, eat; things like that?

It's also possible to hire something called (here, anyway) a bed stick, which will help you get in and out of bed without putting too much strain on your abdo muscles.

You mentioned a while ago that you have a cleaning lady. Does she still come?
Co-Moderator Crohn's Forum.

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


MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 4/11/2010 7:12 PM (GMT -7)   
I can order in some food and I will hire back a cleaning person.
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…


dorri
Veteran Member


Date Joined Feb 2003
Total Posts : 1876
   Posted 4/11/2010 8:19 PM (GMT -7)   
I can't say that I regret it. My crohn's and obstructions were so bad that if I didn't have the surgery I wouldn't be around today to write this. It got so bad that every meal was an ordeal of me wriggling on the floor in severe pain. I tried to avoid surgery for years before I finally gave in because things got too serious and gave me a real scare. Why I waited I will never understand? The nice thing after surgery I would panic at meal time expecting the pain to follow but it didn't. I was even able to have seconds.
The only thing I do regret is the bile acid diarrhea which persists chronically ever since I had the surgery and that can be annoying especially when it's several times a day. But before I had diarrhea and pain, now it's only diarrhea for the most part and a sore butt and fissures .
I had 7 years of freedom from crohn's pain after surgery, even though the crohn's presented itself at a later date it didn't really cause me the severe pain I had before. Now I am in trouble again with bowel narrowing due to scar tissue at surgical site. It's getting to the point where I will have to go soon and have it dealt with. When it comes to severe narrowing from scar tissue, there is not much one can do to stall the process and pills and treatments won't help. So here I go again.


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 4/12/2010 2:54 AM (GMT -7)   
im gonna email ya...
randynoguts 



     http://www.geocities.com/randynogutsweb/


cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 4/13/2010 7:29 AM (GMT -7)   
Personally I've never understood people who spend years trying to hang onto an intestine or part of an intestine that's causing them nothing but grief and robbing them of they're lives. I say go for it. I had 2 done and long stretches of remission with each. I never thought twice and never looked back.

Iram
Regular Member


Date Joined Jul 2003
Total Posts : 145
   Posted 4/13/2010 1:46 PM (GMT -7)   
This is an interesting discussion and I am learning a lot from it. Now, I am in familiar situation, I am on remi now, but it is not working more than 4 weeks at a stretch and my next dose is not up for another 2 weeks. So I end bumping my pred intake, I am one of those prednisone-dependent CD patients, and apparently we belong to a special category.

At any rate, my doct also wants to put of surgery as much of possible, the typical answers are short-bowel syndrome, recovery, infection, leak, scarring at the site of anastomosis, and most of all that surgery is not a cure, but only a temporary solution, so you keep kicking the disease down the road as much as possible. As he put it, let us not destroy the bridge yet, because once you do it, there is no way to go back. Although GI's nowadays seem highly reluctant to approve it, I am also increasingly thinking of going for surgery. But I might it put it off for at least one more year if possible.

Keep the discussion going
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