Any surgery good news stories?

[David R]

HI I have just joined. I am a 48 yr old male, who has suffered crohns since 1987. Its been a while and over the decades have progressed through various meds, and now finally on Humira. To cut a long story short, the meds are no longer working and I am now finally booked for a colectomy in Dec 2013. At this stage I am being told that it will be a resection - joining the small bowel to the rectum but cutting out most if not all my large bowel as it is so diseased. There appears to be lots of horror stories out there, but I am keen to hear people's stories, the recovery, the frequency of BMs and general life post-surgery. I am a little anxious but feel that I am making the right move whilst I am in otherwise good health

 

[Mimzim]

David, I am so sorry surgery is around the corner for you. I am having my first surgery Friday, which will be a right hemicolectomy, taking about 2 feet of colon, due to two strictures, caused by scarring, and lymph node involvement. I have also had Crohn's for a while, since 2005, but not nearly as long as you. It is really tough going through this decision. I am sure there are many other more experienced people in the forum that can tell you more info, but I wanted to wish you well and let you know you are not alone.

 

[David R]

Mimzim. Sorry to hear that that this is coming for you. Pls do keep in touch and let us know how it goes. I am trying to be positive about it - hoping that it will lead to a longer term improvement. My sense is that we hear lots of bad experiences, perhaps in a disproportionate manner. If it can cut out the cramps, the feeling of fatigue and remove the high cancer risk my sense is that this is a good thing. For years I have been told that I will eventually lose my colon, so I am kind of prepared for it.

I too have too strictures - like you.

I am not sure what the term is other than to call it a 'colon resection' - they will connect my small bowel to the rectum (perhaps keep a little of the large bowel). So I am being told that a stoma bag will not be necessary. Does this sound similar to you?

 

[annawato]

Hi David R, I've mainly only had small bowel involvement which has resulted in an ileostomy so I can't comment on your op but I did want to say that people who have had success are less likely to post on a forum. i.e., we tend to get those with problems so don't be alarmed by all the failures you read about.
That said, I have read of many people that have success with their resections. My first resection gave me a good few years of relief and other people talk about going into "remission" after them. I'm looking forward to reading of peoples success stories too.
And also looking forward to reading of your success story post op too!

 

[DJW]

Hi David. Surgery brought great releif. My ileostomy surgery gave me my life back. It takes time to fully heal. As in months not weeks so try not to get discouraged during the healing process.

 

[Mimzim]

David, yes my surgeon said a stoma bag would not be necessary and the remaining portion of my colon will be connected to my small intestine. She used more anatomical words for some of this explanation, but I don't remember them. I am only losing the right side colon so far, but my surgeon said she hopes that last for 10 years at least. Of course I hope longer, but it may be less.

I like what Anna said that most people talk about problems on the forum, so we learn about those and the successes are fewer. So, let's hope for success! :dance:

Donna

 

[LylahJean]

Hey guys, I'm also relatively new here. I'm 23 and was diagnosed with crohns when I was 8. My GI has referred me to OHSU to get a second opinion on what I should do. I'm not responding to remicade anymore, nor am I responsive to humira. Surgery is a very serious option and I'm terrified. I have a 1 year old daughter, and a baby boy due in 4 weeks. My wife is going to have a csection and if I have surgery at around the same time, I don't know how we are going to survive.. if any of you have had an ileostomy, is that a permanent bag, or is it possible to be only temporary?

 

[David R]

Hey guys, I'm also relatively new here. I'm 23 and was diagnosed with crohns when I was 8. My GI has referred me to OHSU to get a second opinion on what I should do. I'm not responding to remicade anymore, nor am I responsive to humira. Surgery is a very serious option and I'm terrified. I have a 1 year old daughter, and a baby boy due in 4 weeks. My wife is going to have a csection and if I have surgery at around the same time, I don't know how we are going to survive.. if any of you have had an ileostomy, is that a permanent bag, or is it possible to be only temporary?

Others will know a lot more about the temporary nature of the stoma bags. I dont know much. Timing is tough on you guys - I dont suppose surgery ever comes at a good time, but this is really tough. I stopped responding to Humira, i think because I became so susceptible to infections, that I seemed to have a constant bowel infection for months. And probably still that way. I respond short term to prednison, but this is not a long term solution. I just discovered this week that digetive enzymes really work for me. from 15 BMs a day down to around 2-3 with no pain or cramps.

 

[David R]

David, yes my surgeon said a stoma bag would not be necessary and the remaining portion of my colon will be connected to my small intestine. She used more anatomical words for some of this explanation, but I don't remember them. I am only losing the right side colon so far, but my surgeon said she hopes that last for 10 years at least. Of course I hope longer, but it may be less.

I like what Anna said that most people talk about problems on the forum, so we learn about those and the successes are fewer. So, let's hope for success! :dance:

Donna

wow looks like we are facing similar situations. I think I am going to lose 2/3rds of the colon. But as my GI emphasises, you wont really know what is going to happen until they open you up to look at the state of the colon. Lets hope the resection works for us both!!

 

[Stevie1021]

Hi David- sorry to read you will soon be having surgery. I was diagnosed with Crohn's Disease in Oct of 1983. I had suffered with the symptoms for years before finally being diagnosed. I had the surgery you are describing. In oct 1996, I had a Sub-total colectomy with an ileo-rectal anastomosis. The surgeon removed all of my large colon and connected my small intestine to my rectum. Next month it will be 17 years since my surgery. I'm pleased to tell you that it was the best thing I ever did. Recovery was not easy, but my health improved day by day. I was slowly taken off steroids (Prednisone) and all other meds. I have remained on Mercaptopurine (6-MP) and it has helped keep the disease under control. I did have recurrent Crohn's a year or so after surgery at the site of the anostomosis which is somewhat common. Yes I have multiple bowel movements and diarrhea but my overall health has been much better. I hope you will do great after your surgery. I had a wonderful surgeon and GI Dr that I trusted completely. If you have questions I would be happy to answer them for you as well as I can . Best of luck to you !

 

[Dronnny]

Hi David, I was diagnosed 1990 then tried lots of meds then in 94 suffered an obstruction so it was in for my first right hemicolectomy.
Got 2 good years then obstructed again at the anastomosis....back in again for resection in 96.
Fast forward to 2012, bad obstructive symptoms again & another 2 strictures so i am just 14 days post surgery & getting better by the day.
Hope you have success with yours cheers Deano

 

[annawato]

Hey guys, I'm also relatively new here. I'm 23 and was diagnosed with crohns when I was 8. My GI has referred me to OHSU to get a second opinion on what I should do. I'm not responding to remicade anymore, nor am I responsive to humira. Surgery is a very serious option and I'm terrified. I have a 1 year old daughter, and a baby boy due in 4 weeks. My wife is going to have a csection and if I have surgery at around the same time, I don't know how we are going to survive.. if any of you have had an ileostomy, is that a permanent bag, or is it possible to be only temporary?

Most ileostomys are temporary to allow the bowel to heal after surgery. Mine is permanent as no drug therapy has worked for me.
I think it would be very difficult for you to have surgery at the same time as your wife. Even if you don't end up with a stoma it can take a while to recover from the surgery and you are advised not to lift anything heavy for awhile too.
That said, I had twins 22 years ago by caesarean and it was impossible to avoid heavy lifting ie car capsules etc. I survived all that.
My first couple of resections I did recover fairly quickly. A week in hospital and then I was pretty much back to doing normal things at home. My most recent surgery I took a lot longer to recover from because I got wound infections and other complications. Plus I am now a lot older and have been on steroids for a long time - they both delay healing.
Good luck with your surgery. Hopefully it wont be at the same time as your new baby is born but even if it is, you are young and no doubt will recover quickly as will your wife. And congratulations on the new baby.
:heart: anna

 

[LylahJean]

My baby boy was born yesterday at 4:28am!! He was born vaginally with absolutely zero complications he was 7lb 7oz. I still have not been scheduled with the specialist, so I think things are going to be just fine.

 

[DJW]

Congratulations.

 

[David R]

Hi all - I had the surgery, essentially a full colectomy, joining the small bowel with the rectum. Spent 8 days in hospital, which wasn't a lot of fun. After day 2 I needed a nose pipe as it seemed my stomach was not cooperating with my small bowels; and needed to be regularly drained. Spent much of the time in hospital feeling nauseous and in pain, and managed very little sleep at all...if any. A day after leaving hospital things started to improve. Nausea went away, and I started to get a few hours sleep a night. I am still managing the pain but it has reduced. Now at day 12 post op - getting stronger every day, but still too weak to do anything that ambitious. Walking around the house and going out occasionally. But sometimes I get exhausted and just need to sit or lie down for a while. Hope to go for some strolls later this week, early next week. BMs are kind of strange and very frequent, but I suppose that is to be expected. I suppose so far so good......

 

[David R]

oh and the other thing...I seemed to have lost 10kg. Appears to be mainly muscle definition...so i have some work to do once I am recovered.

 

[UnXmas]

So much of what you said is familiar to me. I'm about 8 weeks past an ileostomy surgery. I went through all the sleepless nights, weight loss, weakness, I even needed a nose tube too.

It gets better. You'll start feeling human again, and life will go back to normal again. Sometimes when you've been in hospital a while, I find, it's hard leaving it - I felt anxious not having nurses on hand all the time. But the anxiety goes away, and I'm sure you're finding that it's much better recovering at home where you have your own bed and your own comforts. I sleep so much better at home.

Your appetite should come back, and you may find you regain the weight naturally without having to apply conscious effort. Your strength will come back - some people say that it's best to force yourself to get up and walk around when recovering; personally I find that it's better not to push myself. When I'm strong enough to walk further, the desire to get up and do more comes with it, so I end up gradually being more active when I'm ready to.

Since my most recent surgery was an ileostomy, the frequency of bowel movements isn't something I've had to deal with this time round, but it is very common to have more frequent bowel movements and diarrhoea after the surgery you had. As long as it's not to the point where you're getting dehydrated and there's no blood or anything, it's probably normal for you at this stage.

Hope your recovery continues to go smoothly.

 

[David R]

Now just over 6 weeks since my operation. I actually felt better and stronger after 4 weeks (I am now back in Asia, operation and initial recover was in Australia). Getting impatient about not exercising - keen to get back to swimming, running or weights...but still not ready. Have tried swimming a little but was exhausted later in the day and stayed in bed the following day. Over the past few days have had pain in my lower left abdomen, but only when I move, so have assumed it to be muscular.

All the advice is to be patient, it takes time etc etc. Just not seeing a lot of improvement in recent weeks.

BMs are at least becoming a little less frequent. Have got mountains of gastro-stop (anti-diarrheal), but I dont take it that much. Still on low fibre diet, but seem to be able to eat meat ok.

So digestively doing ok, but just keen to feel better and get back to normal life, play sports, do something energetic with the kids etc etc

David

 

[David R]

HI just an update. It is almost 5 months since my surgery. Overall I would have to say it was a success. No more crohns, at least for now. Energy levels now back up. Starting training and exercising in March and this weekend I am competing in a triathlon (unthinkable a few months ago). Sure frequency can be an issue, particularly as I eat whatever I want (usually healthy food with higher fibre) - but I have never been caught out. So far so good. A good news story.....

 

[Daisy123]

Hi David
I had that operation 3 years ago. It was ok at first, but I needed to get up two hours before leaving home because of diarrhoea. Because you don't have a colon, you don't absorb water and need to ensure you keep hydrated. I now have strictures so moving towards a permanent ileostomy but at least I feel I tried.

 

[Captivating Crohnie]

David R,

Thanks for sharing your journey. I'm at a crossroads where surgery is probably my best bet. I've read all of the stories and possibilities of an ostomy. This makes me more confident in having the surgery for improved quality of life. Thanks again.

 

[F.u.Crohns]

Sup David,

I recently had surgery last month on the right side of my abdomen. I had a quarter size hole in my small intestine on my right side that been causing me major pain for couple months. Also my ileum will be always inflame from my crohns, so I been dealing with this pain for couple years. I was Dx with Crohns in 2011.

They remove 6 inches of my intestine also remove all the scar tissue in my ileum. I have never felt sooooooooooooooooooooo good its unreal how surgery gave me this much relief from crohns. The doctor basically told me I'm in remission right now since they remove all the active crohns from my body. Just need to make sure I keep up with the remission medicine.

Good luck with your surgery !

 

[F.u.Crohns]

I'll be going on Remicade for my remission meds and V-b12 shots.

 

[Shelia]

I'm 46 and was diagnosed in 1987, my first surgery was 12 years ago and it was a great success. I had a fistula, stricture and abscess, my right colon was removed and 16 inches of intestines. I had a total resect and healed wonderfully. I got a nine year remission med free out of that and it was wonderful! I'm always going to be proud of that remission time with my girls and all the beach trips and memories!!

 

[mrjohns2]

I have been in remission for a couple of months. A really good amazing remission. I haven't really felt like even reading the forum let alone posting the entire time. Your observation about the good result people not posting is so true for me.

Hi David R, I've mainly only had small bowel involvement which has resulted in an ileostomy so I can't comment on your op but I did want to say that people who have had success are less likely to post on a forum. i.e., we tend to get those with problems so don't be alarmed by all the failures you read about.
That said, I have read of many people that have success with their resections. My first resection gave me a good few years of relief and other people talk about going into "remission" after them. I'm looking forward to reading of peoples success stories too.
And also looking forward to reading of your success story post op too!

 

[kat-y]

I am 44 and was operated on within 8 weeks of being diagnosed with Crohns, I had an abscess drained and 8 inches of small bowel removed with a resection. The improvement has been significant and I am now 4 years post surgery this month and with the Azathioprine I have stayed fairy healthy since then. Recovery can be slow esp if you are pretty sick when they operate but it will happen, I think it's really important positive results are posted and we let others know that there are good news stories out there. It helps !

 

[Rick_1138]

I had a right heliocolectomy in early feb this year. Full surgery, not laproscope so got a swish manly scar and everything.

I was a bit broken the first week home, quite sore and hard to move and going to the loo was an experience.

However the pain from the scarring in the ileum is totally gone. They removed some of the small bowel (about 5 Inches, the terminal ileum and the ride side of my large bowel (about a 1/3 total I believe) and my appendix.

The only issue I have now is I am very nervous travelling as can need to go to the loo suddenly but its not diarrheah, so its a bit odd, but hopefully this will subside as its only been 4 months and the docs say can take a year to fully sort out. However I was walking around and such as normal after about 2.5 months

Would recommend as it does remove the pain which was very unpleasant, and hopefully now I am back on a reduced dose of AZA the urge to go and stress will subside.

 

[cleuger]

I love this post This is so helpful for me. You guys are great for posting your stories its a great relief to thoughs of us that are getting ready to have resections... to see the positive side of the surgery.

Thanks : )