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Should i have surgery?

Hello everyone,
I have been having my flair up for several months now and the main problem I have is a stricture.It was at its worst a couple of months ago when I was hospitalised and I was told by my consultant that it wasnt a good idea to operate during the flair up due to healing issues and being very messy because of the disease,basically I was too ill to operate on.
The problem I have now is that I feel a lot better although not 100% I have been left wondering do I really need the op?
I know that the scar tissue will never go away and in reality this is the perfect time to do the op because it will only get worse with time.
If anyone out there has had a resection or what ever its called please can you enlighten me on the subject as I know nothing much about it.I have been told that if I need a bag on they can probably reverse it but it all sounds extremely scary to me.
Deep down I know I need the op but just scared of whats to come.
Can anyone please share their experiences so I know what im in for?
Cheers!
 
Surgery should always be the last option, but for many of us, it has given us our lives back. Except for the fact that i have a plastic bag attached to me everyday, I live like a completely normal person which I wasn't able to do before surgery. My life has improved dramatically since my operation. It is scary, and it comes with it's own frustrations, but it was also the best thing that ever happened to me.

PLUS- I can eat whatever I want now. Dairy, fiber, salad. I ate a piece of beef yesterday. Beef I tell you!!!

Good luck in whatever you choose.
 

DustyKat

Super Moderator
Hi JayJay,

Roo has had a resection, Right Hemicolectomy, which involved the removal of her Terminal Ileum, she did not require a bag. Although her surgery was not elective she has been in remission since the op which is 4 years now. She takes a maintenance dose of Imuran daily and Folic Acid three times a week plus B12 injections every 3 months. She had no choice with the surgery, it was straightforward with no post op complications even though her bowel had ruptured and she had peritonitis. I can only say, that in her case, I can't fault the outcome.

Dusty
 
Hi Jay,
What scares you more, the surgery in general? Or getting the bag? Or both?
Surgery is always going to be scary, once I commit to it, I find the best surgeon I can, and put myself in their capable hands.

As for the bag, thats a whole other topic! You might not even need it, or might just be temporary.

Also, where is the stricture? Colon or small bowel? I had a small bowel resection, they removed about 30cm. It had nothing to do with getting my ostomy.
 
Hello everyone again?
Thankyou for taking the time to read and reply!
Reading your replies has been positive for me and a fairly good insight so far.I think its something I am just gonna have to get my head around.
As for your question CDDad I think its the thought of wearing a bag that bothers me the most,my consultant seems to think I might need one temporarily but he also said it all depends on how the operation goes,what ever that means?He isnt the most fourthcoming man in the world.
The stricture itself is in the small bowel,bottom right just roughy where my appendix used to be.
Thanks once again everyone.
 

Nyx

Moderator
Just my two cents here...having a bag isn't that bad...I can think of much worse things that could happen to a person. Just sayin'...

Good luck with whatever you decide to do :)
 

DustyKat

Super Moderator
my consultant seems to think I might need one temporarily but he also said it all depends on how the operation goes,what ever that means?He isnt the most fourthcoming man in the world.
They will often say something like that, simply because they can't guarantee 100% what the outcome will be until they actually go in and see what's there and what they have to deal with.
 
@ jayjay - Surgery decision is very challenging. Ultimatley its a function of ones individuale situation. I fought for 15 years to save my colon and tried every medication, both conventional and alternative, traveled the world to find a remedyand... suffered all along from pain and mental anguish.
With the help of your doctor you will know when its time (emergency surgery are not fun...).
Its unclear from your post what is the severity of your situation and what have already explored.
Good luck with your decision
 

Crohn's 35

Inactive Account
Hi jayjay , welcome to the forum. I understand your fears, and most likely you wont have a bag in that area. I have had two resections. Your doctor is correct on not having surgery when you are flaring or infected. Hopefully your surgery will be laproscopically done and that is less invasive. Strictures rarely go away, espcially if it is scar tissue.

I had antibotics one week prior and after the surgery. Even if you are feeling well, since there is no cure, and before it becomes worse or a full blockage, surgery may be required. Surgery is not always a last resort any more, but not to be taken lightly either. I would have the surgery and have a decent few years of remission. Good luck on what ever you decide, let us know how you keep on.
 
I am pretty much in the same boat as you Jay. I have decided to go for the surgery rather than try the biologics, these are my reasons:

1) The portion affected is rather small (5 cms) but I also have two fistulas (both between sections of my intestines)

2) I have read that you can develop anti bodies to Remicade/Humira over time so I would prefer to put off using them

3) I want to avoid injecting myself or sitting for infusions for as long as possible

4) I want a fresh start with this thing. While this disease was doing all of that damage to that portion, I never even knew I had it. I feel like I would have a fighting chance now that I know what I'm dealing with

5) My gut tells me it's the right thing to do for me

I am still waiting for my consult though.
 
I was supposed to have my surgery last fall in October, put it off till March of this yr. because I was so scared of it. My terminal illeum was removed about one foot, couple inches of my large bowel and my appendix. It was the size of a shoe string, I had three fistulas, and was facing a rupture. So for me it was kinda do it or face something worse. I put it off and tried the Humira injections, which i would of rather had than the surgery, one of my side effects from humira was a terrible fungal infection in my mouth. So they had to take me off. I loved it. I almost immediately stopped having the terrible pains. Since I had the surgery I can eat whatever I want, WHATEVER I want, I have enjoyed Salad, Red Meat, Granny Smith Apples and even Popcorn. I did not have a bag, and they were able to do my surgery laproscopicly so the pain was minimal. They also implanted a pain buster which helped tremendously! ( apain busted is this little rubber ball that you carry on your waist in a fanny pack it is full of localized pain meds as it deflates it pumps meds into your belly via two very small tubes implanted into your stomache). My surgery went well and was only in the hospital three days. Unfortunately because my immune system was so screwed up from the pred, humira, sufasalazine, and pentasa I contracted an infection and was back in the hospital within two days, in all I spent 13 days in the hospital with cellulitis infection which is a common skin bacteria that everyone has I just couldn't fight it. I now have a pic line so I can infuse antibiotics everyday. Hopefully it will be comming out on Aug. 2. My stomache doesn't feel like I have two Jedi Masters fighting till the death in it any more but I still have daily cramps that are bearable they feel more like bad gas now. As for the bag my Gran has had one for about 10 yrs now (she had colon cancer) you would never even know that she has one unless she told you. She wears fitted clothes and even goes swimming and I have never ever smelled her. Hope this helps and welcome to our forum!
 

Dallies

Dragonfly
I know how you feel Jay-Jay, having just returned form the hospital and being told that we could delay surgery with injections, we have confirmed a surgery date.

He told us the stricture would not heal and that there would be scar tissue so surgery would be inevitable. Surgery would be the way forward for Meg and has a very promising outcome. She is going into hospital in 3 weeks. Agreed it is a scary prospect. (I'm more worried than Meg - she is so laid back!)
 
Hi

I can understand your worries. Even though its good to be positive when it comes to dealing with crohns, complications can arise. I have had surgeries for a resection of my ileum. It was supposed to start off as 1 surgery and it lead into 2 additional surgeries and an abscess that formed at the surgery site a few weeks after the 3rd surgery. That was another 2.5 weeks in the hospital. That also would have been a 4th surgery but I refused and kicked the surgeons out of my room each time they entered. Luckily the abscess healed on its own with medicine. This all happened within a 6 week period.
I am not trying to say that having surgery is not a good choice to make but just make sure it is completely necessary. My surgery was necessary but at least if I ever need another surgery I have more knowledge of what I would do differently from my past experiences. I do not regret having the surgery, I just wish that things could have gone a bit easier because it has left me with some memories that still bring tears to my eyes when talking about it 3 years later.
I think its great when people have great outcomes I just want you to be aware that it might not be a perfect fix for crohns. Again I am not trying to sound negative just realistic. I cannot eat anything I want. I have active crohns again. Even for my safe foods I still have moments where they are not safe. My narrowing has come back to the same area as before. Not as bad as before but it is starting again. Some medications have not worked well for me, and I have tried many different kinds. I am not feeling my best these days and have found another specialist who my GI referred me to. The doctors say that they need to build me up again. The last 3 years have not been that easy either. There was a period where I went back to work thought things would go well and the crohns started again. I had a huge flare up that put me in the hospital and then 2 weeks after I got out a blockage. I had to go out on disability and it will be 2 years this november I have not been able to work due to not feeling well.

My case is not what everyone goes through. Some people have no complications and some have to deal with a lot more than I had to. For what ever you decide I wish you the best.
 

Dallies

Dragonfly
I am not trying to say that having surgery is not a good choice to make but just make sure it is completely necessary.
I hope that with the guidance of doctors and consultants that any surgery performed is, indeed completely necessary.
 
I hope that with the guidance of doctors and consultants that any surgery performed is, indeed completely necessary.
Not the case all the time. Sometimes there might be other alternatives. Some surgeons here in the US will jump to surgery faster than a different route to take. Again I say "SOME" surgeons! For example when I had the abscess and my blockage I had to refuse surgery. A few doctors agreed and a few did not. It was up to me to decide at that moment.
 
@ JennJenn - You are 100% right about your assesment with respect to surgery. I am very sad to hear about the tough road you had to go through. What meds are you on? what are your safe foods?
If you wish, I will be happy to PM you my nyc GI doctor, he is one of the best.


When I was first diagnosed I was in the hospital for 6 weeks (yes sis) and they were pushing surgery on me which ever way they could. I lost 50 lbs during this hospital stay and was closed to losing my life because they just had no idea. And I am not taking about a hospital in some rural community in the desert but in main city USA. I found the right GI dr in NYC and together we saved my colon for 15 years.
I am now just about 20 days post surgery, and despite complications caused by the surgeons, I am the happiest men alive.
 
Thankyou everyone again for your comments and support!
I think I have been in denial about the whole crohns thing and didnt realise how different and complex each case is.
I was first diagnosed when I was 14,im 33 now.Before I was diagnosed they thought I had peritonitis and I was rushed into hospital to have my appendix taken out,I was in and out of hospital for months and months and eventually Great Almond street hospital found out it was crohns.Anyway from then to now I think this is only my third or fourth major flair up,but what a killer its been,it has completely put me on my arse!I have always considered myself to be a strong old boy,feeling invinceable over the years but everything it seems has caught up with me a bit.Ive heard that 75% of crohns sufferers have an op in the first ten years so i think ive done quite well considering.Its gone from severe diaorriea to extreme constipation over the last few years to the point now where I have to drink lots of laxatives just to make me go to the toilet once every three to four days,that must be the stricture making itself known.The rumblings in my tummy keep me awake at night and have even woken me up on several occasions.Its got to the point now that it is fairly embarrassing because people hear my stomach before they actually see me!
My consultant says that the stricture wont go away now even if I do feel better so perhaps the time has finally come.Apart from now I have never considered the disease to be that much of a problem with flair ups being few and far between but now they seem to be much more aggressive.
Anyway im at the hospital on monday for a chat with the docs so I will keep everyone informed,Thanks once again for the nice comments.

Pentasa 2000mg-Azathioprine 150mg-facechub pills/prednisolone down to 10mg-Androlic acid 10mg daily.

Azathioprine,I think are very good,didnt have much luck with the steroids this time round,since I have been taking the Azaths things are much improved and my face has deflated,which is nice!
 
JayJay, I just ended the 7 year fight to save my colon two months ago. About 4-5 months ago I realized how much I needed the surgery and that I much rather live with a bag than live without one and being in constant pain and suffering. I'm not going to lie, if you read my ostomy story you will see all the suffering I went through the first 5-6 weeks after surgery but now that I'm doing well I wouldn't have it any other way. I love the bag although it can be a love/hate relationship when it comes to changing them but that's for another day and another thread. I want to encourage you to have surgery if you are not having the quality of life you wish. Everyday I prayed that I would be healed and I wouldn't need the surgery up until the day I had the surgery. I think, I can't fully remember, that I asked my surgeon if he could check my butt just to see if the stricture had left.

I now have an appetite. I now want to go and exercise. I feel capable to study. I feel as if I can safely live my life. Take care JayJay
 
Where is your disease? That would be the deciding factor for me I guess. I had my ileum removed and it was the best decision ever. I had the operation when I was as sick as I could be and I healed fine. We'll now I think back it wasn't a decision, If I didn't get the surgery I would have died.
 

Astra

Moderator
Hiya JayJay

I've got strictures in my terminal ileum too, and my first thought is, leave well alone!
Back in Jan I became blocked due to narrowing cos of the scarring on the strictures. My gastro said surgery was a last resort, he said I was so infected, I nearly died, my CRP was 261, but he avoided surgery with IV Metronidazole, Morphine and Hydrocortisone and then after 3 days started with 50mg of Pred.
He explained that whilst surgery is last resort, depending on how diseased the ileum is, he will leave it alone, surgery = more scarring = more strictures!
I have healed perfectly with the help of Pred!
good luck Jay with whatever you decide to do!
xxxx
 
I am in the same position

Thankyou everyone again for your comments and support!
I think I have been in denial about the whole crohns thing and didnt realise how different and complex each case is.
I was first diagnosed when I was 14,im 33 now.Before I was diagnosed they thought I had peritonitis and I was rushed into hospital to have my appendix taken out,I was in and out of hospital for months and months and eventually Great Almond street hospital found out it was crohns.Anyway from then to now I think this is only my third or fourth major flair up,but what a killer its been,it has completely put me on my arse!I have always considered myself to be a strong old boy,feeling invinceable over the years but everything it seems has caught up with me a bit.Ive heard that 75% of crohns sufferers have an op in the first ten years so i think ive done quite well considering.Its gone from severe diaorriea to extreme constipation over the last few years to the point now where I have to drink lots of laxatives just to make me go to the toilet once every three to four days,that must be the stricture making itself known.The rumblings in my tummy keep me awake at night and have even woken me up on several occasions.Its got to the point now that it is fairly embarrassing because people hear my stomach before they actually see me!
My consultant says that the stricture wont go away now even if I do feel better so perhaps the time has finally come.Apart from now I have never considered the disease to be that much of a problem with flair ups being few and far between but now they seem to be much more aggressive.
!
OMG - I just got back from my consult. I need a 20cm of my ileum and a small portion of my colon removed - laproscopically. I was told there is a chance of waking up with a stoma though (albeit would be reversible). WFT!?! Like you, I do not even have urgency or diarrhea, just constipation! The stupid narrow/stricture area makes so much noise and it does feel like something is wiggling inside me which really sucks. I am always concious of it too and I can not eat many things. Mostly just highly processed, kinda mushy foods. And even with a low-red diet I feel bloated and backed up:( which does tend to cause discomfort and sometimes pain....

But I digress -

What choice do I make? Have the surgery and just accept the risk of getting a stoma (I know infection or excessive bleeding are probably what I should be most concerned with, but the stoma thing scares me and is really embrassing - what if they can't reverse it later?) or skip the surgery and put up with it until the last possible moment?

So what do you think?
What does everyone else here think?
Am I just a big baby?

Oh, and yes I do not respond to much, if any meds. I tend to have a lot of bad reactions to them:(
 

DustyKat

Super Moderator
This is hard to answer in the sense that it is such a personal decision.

Roo's surgery was an emergency and quite frankly I would give anything for it to have been done under our terms. You will always have risks both ways ~ if you say yes now do you leave yourself wondering if you could have held onto that piece of bowel longer and avoided surgery. On the other hand you may risk your bowel perforating and then you have no choice.

As I said, if we had a choice I would have preferred the operation be done under planned and controlled circumstances, this way the surgeon pretty much knows what to expect and most likely the least amount of bowel will be removed. In my opinion there is nothing better than being able to call the shots.

Good luck!, :)
Dusty
 

Nyx

Moderator
My sigmoid colon perforated and I distended my bowel due to severe constipation from the Crohn's. Needless to say, I had emergency surgery and now have a permanent stoma. Having said all that, if I had known how great my life would be with the bag, I'd have gotten it done years ago. Don't get me wrong, it's definitely life changing, and does take some getting used to, but the benefits definitely outweigh the cons.
 
Jayjay and fateful one. Go for it!! I had 23cm ilium/ small bowel removed. Had a stoma for a couple of months. That was 2 years ago and now (with meds) i can honestly say "crohns what crohns????"
There are a lot of success stories!
 
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