Success of surgery

[steelerfan]

I am wondering how successful surgeries have been for others. I have heard many wonderful stories, it seems most have been successful and worthwhile. This may make it a little more clear.

I guess knowing how many people have had a surgery would also be insightful.

I also am curious to know how bad it has to be before surgery is an option. When I was first diagnosed I was told by my former GI that surgery was imminent...he is no longer my GI. He also skewed my perception of when surgery is needed.

 

[DustyKat]

Sarah's surgery was an emergency due to her bowel rupturing. She was undiagnosed going into surgery and had CD when she came out.

Matt was diagnosed within 2 weeks of his first symptoms appearing. He was admitted to hospital 2 weeks after diagnosis and it turned out he had fistula and abscess in his ileum so surgery was imminent for him. It was held over for 3 months to allow the inflammation to progress from acute to chronic. We were told that the fistula wouldn't close on its own and sure enough it didn't, in fact when they opened him up they found another fistula and abscess. He had been on Prednisone and was also on Imuran, Flagyl and Augmentin Duo forte.

Dusty. xxx

 

[archie]

Hi I only got diagnosed last year after a very short episode of symptoms. CT scan and small bowel series showed 1 ft of stricture and CRP about 90. I very quickly developed a 4cm abscess and a perforated bowel CRP 280, which lead to an iliocecal resection removing approx 1ft of bowel, due to fibrosed TI which meds wouldn't fix. Feel good since surgery still have good and bad days with pain etc but no fever / sickness etc, bloods all normal recent scope showed some ulcers at surgery site but all in all good.

 

[DustyKat]

Forgot to add...

Sarah has been in remission since surgery, so five years now. :banana:

Matt had surgery 4 months ago and has been going great guns. No further symptoms and he has gained back 10 of the 12 kilos he lost! YAY!

Dusty. xxx

 

[Jefferson]

My first resection in 1995 granted me 10 wonderful years !!

 

[amssgirl]

That is something I have been wondering too, steelerfan. My boyfriend and his doctor and seriously considering surgery (to take place sometime before the year is up, depending on wait times). We've read somewhere that 50% of people who undergo surgery will be symptom free for 3-4 years before they have to consider surgery again. (He is totally stoked about the possibility of being symptom free for 3-4 years).

I have also read elsewhere that most people will have to go through at least 2 surgeries in their lifetime...I'm not sure if more than 2 surgeries will be needed, especially since it seems the surgery on average puts it in remission for roughly 10 years before it reappears again? (Does anyone have a better answer to this?)

All the best to you, steelerfan.

P.S. Jefferson, oh it would be so wonderful if we got 10 wonderful years too! Congrats!

 

[steelerfan]

Sounds like a quick fix...but a gamble at the same time.

 

[jesseiam2]

By the time I was properly diagnosed, surgery was the only real option available for me. I was out of the hospital in 5 days and back to work in about 5 weeks. 13 years of remission before I had any real issues (always had minor problems). I wanted surgery again instead of the doc putting me on Humira and 6MP. He told me no, and that even if I had surgery I would need to go on these drugs for maintenence.

 

[archie]

Hi jesseiam, what surgery did you have and were you on no meds for 13 yrs? also what kind of niggles did you get, sorry for all the questions but I had surgery last yr and have a few niggles but not sure if they're just normal i'm also very reluctant to take any meds as I don't think I suffer too badly.

 

[jesseiam2]

Dont be sorry for the questions, its what this forum is for!

I had 14 inches of the small and large bowel removed (about half and half really). The bowel was so destroyed by the disease that it had separated and was dumping into my body. It was interesting to watch the xrays of the small bowel series and see the barium tracing its way through the intestine and then come to a complete stop where the bowel had blocked off. A small trickle led into a wide open space.

For me, no drugs at all except the occasional prednisone 7 day pack to clear up the gout over that 13 years (I had 2 bouts of that). As for the minor here and there stuff, it really was quite minor. Things like the need to rush to the bathroom on occasion. Gas and bloating. Very rarely I would experience a little bit of pain but that was usually because I ate something stupid that I shouldnt have. That really was true of the gas and bloating too. It was when I ate something that caused it. Really it was quite pleasant. I knew what my diet needed to be and as long as I followed it, I rarely even thought much about Crohn's.

 

[archie]

Thanks for the reply I'm still trying to establish whats normal or not as I was only diagnosed last year. I had about a foot out mainly small bowel and a little of the large colon due to a abscess and perforation. I felt great post surgery and was so relieved not to be taking any meds.

Recently I started having a little right sided pain which started in what I thought was the liver but has settled in the usual RLQ it's not bad and doesn't stop me doing anything but it grumbles away, i've also had a general tummy ache now and again and rushing to the loo a bit more, to me it feels like IBS although recent scopes have shown ulcers back at the surgery site which i'm just waiting for biopsy results now. If it is active crohns they want to put me on a maintenance med (boohoo!!).

I agree with you diet is definitely a big part as is stress, I don't typically suffer from stress but if something stressful happens it plays havoc on the system. Anyway thanks for your advice and I hope you feel better soon

 

[kattystock]

My surgery was due to strictures (removed 10-12 inches of my large intestine) and I was fine for 3/4 months (on salofalk and tapering prednisone) and then SOME of my symptoms came back. The strictures were gone and the nausea that went with them was also gone but the loose stool and exhaustion had come back. They put me on Humira then and it definitely helps but during the school year the stress gives me issues from October until May.

 

[barmybev]

My first surgery 1992 put me in to 15 yrs remission (Was starting to think I didn't have crohns) The surgery from 2009 no remission due to having fistula's hopefully one day ill get remission again. Bev x

 

[Crohnadian]

Yes. But for less than 10 months.

 

[Crohn's 35]

First one yes for 8 years, second one no...since 2003...

 

[Spooky1]

no, two weeks after surgery i get very very sore iin the join of small/large bowel, and thats it, the inflamation stays and then strictures. no cure here. being awake during surgery is no fun either. none of my surgeries have really helped, it just comes back even on high dose of steroids, (IV). i've learned to live with it though.

 

[robbo87]

Bit of a weird one really for me. My bowel was perforated so i had an emergency op. But the op wasn't succesfull and complications kept me in hospital for 4 months eventually needing a further operation to have an ileostomy. Although i would say as far as my crohns is concerned, i am in remission and not currently on meds. although before the operation things where being controlled by meds. The bowel perforation wasn't strictly caused by crohns. But hopefully once i've had my reversal things will go back to normal for as long as possible and i will stay in remission

 

[jesseiam2]

Dont be sorry for the questions, its what this forum is for!

I had 14 inches of the small and large bowel removed (about half and half really). The bowel was so destroyed by the disease that it had separated and was dumping into my body. It was interesting to watch the xrays of the small bowel series and see the barium tracing its way through the intestine and then come to a complete stop where the bowel had blocked off. A small trickle led into a wide open space.

For me, no drugs at all except the occasional prednisone 7 day pack to clear up the gout over that 13 years (I had 2 bouts of that). As for the minor here and there stuff, it really was quite minor. Things like the need to rush to the bathroom on occasion. Gas and bloating. Very rarely I would experience a little bit of pain but that was usually because I ate something stupid that I shouldnt have. That really was true of the gas and bloating too. It was when I ate something that caused it. Really it was quite pleasant. I knew what my diet needed to be and as long as I followed it, I rarely even thought much about Crohn's.

I can update this, just had my 2nd surgery (1st one was 12-13 years ago). I feel....

WONDERFUL!!!!

No pain, back to eating what I want, bathroom performance is fairly normal, and I couldnt be happier. You can read my post under the "My Story" thread for all the complete details (assuming anyone really cares).

 

[amssgirl]

Hey Jesse that is great news!
Bf is just home for just over a couple of weeks now, it was a long saga of a story after his surgery but I am hoping everything will turn out great too.

 

[szeichdog]

Since being diagnosed in 1972, I've undergone three resections about 10 years apart. I experienced several partial or full obstructions that would have me admitted for at least a week for each event for the year before my GI would recommend surgery. Post surgery I was symptom free for about 10 years. The only symptom that never resolved is frequent bowel movements although the last 5 weeks has seen a marked improvement. And believe it or not, I think it has to do with the addition of cooked broccoli every day or two; or the Methotrexate I started 6-months ago is finally kicking in.

In all I am missing 18 inches of small intestine, the ileosecal valve, and my appendix. Current meds include Pentasa (4 gms/day), Humira weekly, Methotrexate weekly, B-12 injections bi-weekly, folic acid, 300 mg iron daily, potassium, Omega-3, and calcium. Regular blood work is consistantly normal except for triglycerides which are now somewhat controlled with exercise. I eat whatever I want, exercise regularly, and aside from the crohns, am in generally good health, albeit a bit overweight.

 

[Jennifer]

Had my resection 12 years ago. I'm still in remission. My GI opted for surgery because none of the medications at the time were working so instead of allowing the diseased portion to spread they removed it. Surgery doesn't work for everyone though and the remission time is different from person to person.

 

[Gunny]

My first surgery in 1998 kept me in remission and medication free for 13 years. I had a routine scope done in 2009 which showed no disease. January 2011, I got a bowel obstruction due to severe Crohn's and had to have another resection. The only problem was I found out 3 days later that I had positive margins, and that they didn't get it all out. I am now on my 7th or 8th dose of Humira, and seem to be improving by the week.

Oh, and go Steelers!!

 

[alexisreese]

I just had my first surgery on Thanksgiving. Crappy time to have it but oh well! I feel awesome. I've already gained back 10 pounds of the 30 I lost! I was told I could have up to 7 years pain free. I had about 10 inches of small/large intestine removed along with an abscess. My story is frustrating, just like everyone elses. I was hospitalized before this to have "emergency surgery" for a perforated bowel, which never happened. But after that I was at the hospital almost everyday in the emergency room complaining of the SAME symptoms, which were nausea, vomiting, night sweats, HORRIBLE pain in the lower right side and a HUGE bump on the right side of my stomach (it literally look as if I was pregnant on one side). Apparently this wasn't enough to EVER admit me. Anyway, when my doctor did recommend surgery (which turned out to be emergency) she said they usually know when patients are ready because they aren't scared of the option, they actually welcome the idea of surgery. I was practically begging. Cimzia, Asacol and Prednisone did NOTHING for me. I guess I'm in remission...no pain or anything... I almost feel Crohn's Free!!

 

[LOSTnut]

No and Yes!
I had a resection because of a recurring fistula that didn't hold and within two weeks I was back in the hospital for emergency surgery and woke up with an ileostomy. While recovery was long and painful, I am now fine unless I overdo certain things in terms of eating.
Oh, and still have the fistula that is draining but causes no problems in ther overall way of living. So, not really sure what to vote for, i.e. what you are looking for in the vote.

 

[ekay03]

resection in Jan 2000 remission until last Jan 2011.

 

[Per221]

Remission was short loved 9 months and then reoccurred at joins

 

[Scrappiegirl]

Diagnosed with Crohn's in 1989 at 16yrs
Surgery to remove colon and rectum in 1995 at 22yrs
For the most part, symptom free and no medications for 18 years.

Just recently, I've felt some weird lower abdominal pains/cramps. I've had several tests done; all clear. I'm not sure if it's a recurrence or not, but I have a follow-up with a GI so hopefully I'll have the full story soon.

 

[steelerfan]

Well tomorrow marks exactly one year since I had a resection. I believe I started this post many months before I was told surgery was needed. Sure enough, last April I went back in after three months of Remicade to learn that it was too late. After a rough recovery I have been symptom free of Crohn's, however I am stuck with a lifetime of diarrhea that is best controlled only via oxycodone.

 

[Spooky1]

Same here, no end to it, at least i'm used to it but hey, wouldn't it be great to get remission? or a cure? We live in hope.

 

[borborygmee!]

After 10+ years of progressive fatigue, gut and joint pain, and demonic diarrhea :voodoo: from undiagnosed CD, I could barely function. In 2007, the ileocecal resection, right hemicolectomy and cholestectomy improved my life greatly! I can even work full-time again. However, frequent, scalding diarrhea continued four years until a kindly, new gastrodoc added cholestyramine to my prescription list.

 

[Kaylay34]

Hi All. I am a new member. In January I had a small bowel resection and it was a great success.. I changed my life style to be Gluten Free and today started Humira for the first time. Surgery is never fun but for some very necessary to move forward and maintain a healthy, pain free life... I have great trust in my doctors and this was my first surgery. I'm currently on my way to being in remission and overall I feel great...

 

[Nyx]

My emergency surgery in Dec 2009 was very successful. I had a stoma formed after I had perforated my sigmoid colon and distended my bowel after an extended period of constipation. I must say that while the stoma was a huge surprise, and a lot to get used to, it saved my life...and gave me life back. Prior to my surgery I was pretty much bathroom bound (even though I couldn't poop to save my life, it always felt like I had to), and was slowly bleeding to death. Now, I can eat whatever I want, do whatever I want, and go wherever I want It's been hard, but I wouldn't change it for anything. I've been in remission for 3 1/2 years and haven't been on any meds since my surgery. Knock on wood

 

[Traumanurse]

Well good luck Steeler fan. I wish you the best even though I'm a die-hard Bronco fan!

I had a great remission for 11 years after my resection! Yes, diarrhea every day, but it usually staightened out by lunch, took my Lomotil, then OK for the rest of the day.

Unfortunately, have had a flare going on now for over a year. Only terrible at times, but a pain in the.... (so to speak) every day. I hope you have YEARS of remission after the surgery!