Looking at getting surgery

[Grey Hawk]

Saw another doctor and he recommends that I get surgery.

Basically I had one flare when I was diagnosed 5 years ago and I am having another one now. I don't feel too bad(much better than my first flare), but the colonoscopy says otherwise(My primary and this second opinion doctor both say is very bad)

This doctor explained to me that I'm lucky in the sense that I don't feel many of the symptoms of a flare(Little to no pain, bathroom only once a day, no blood unless from skin tags), but damage is still being done.

What can I expect from surgery? He says I won't have to wear a colostomy bag(Unless the surguron sees something else, and even then it would only be for a few days). What will life be like post surgery? Will I be unable to eat for a while? When can I work again?

The way he explained it to me is as a "fresh start". Is this true? How long after surgery did it take for crohn's symptoms to re appear?

Any and all info is greatly appreciated.

 

[archie]

Hi I had all the same questions as you I was only diagnosed in May and had a perforated bowel in June which contained itself so didn't require emergency surgery however the surgeons all said I had a foot of damaged bowel that would need removed at some point. Anyway after a couple of months on steroids I too had very few symptoms of crohns and felt relatively normal therefore questioned my need for surgery. After great debate with the docs they refused to take me off the steroids unless I had surgery. So in Nov I had a ileo-cecal resection removing about a foot of small intestine / appendix and a little large intestine. I was up the next day and able to eat pretty much straight away. A low residue diet for 6 weeks then slowly introduce fruit and veg and everything else to see what I can tolerate. Prior to surgery I was pretty much able to eat anything. I now can eat most things, some things effect it though like raw veg and too much chocolate (my downfall!!). I def don't suffer diarrhea if anything its slowed things up a bit but again pretty much normal unless I eat the wrong thing then there's a bit of urgency. I have no pain at all and feel 110% better. Normal energy etc so now that I feel like this I know I wasn't right beforehand. I'm so glad I had the surgery it took about a months recovery and i'm back to work no probs 6 weeks post surgery and I have a physical job. I hope this has been of some encouragement to the plus side of surgery. Good luck and any more questions just ask.

 

[Jennifer]

Assuming your surgery goes smoothly, you may be able to go back to work in 2 weeks or so. They keep you in the hospital for about 5-7 days then release you home but you may still have pain and may want to relax a little for at least another week depending on how you feel and what type of surgery was done (open vs laparoscopi or hand assist laparoscopic). You won't be able to eat for a few days after and they will introduce food slowly after you pass gas (a sign that things are working properly).

I did not wake with a bag and most people don't. People are told this just in case so they can be prepared for the worst. I'm still in remission from my resection over 10 years ago.

 

[silvermander]

I've always been opened up, no scopes for these guts as I have too much scar tissue in there.

After the five days or so in the hospital, it takes me quite a lot to get back on my feet. Once, when I was young and spry, I started my following semester at college 11 days after surgery, but that was very rare for me. It usually takes me a good month after surgery to really get back to semi-human.

I've had over a dozen surgeries - not all resecting, but most Crohn's related and I'm quite run down from the day to day beating my body is taking, so I know I bounce back more slowly than many. I can't remember ever feeling up to going back to work in two weeks. Even the college things was very hard and my teachers knew I'd just had surgery (very small college) and actually sent me back to my dorm room to rest a couple times in the first few weeks.

Just showing the other side of thing. Not everyone bounces back in two weeks.

 

[Grey Hawk]

Thanks for all the info.

Couple more questions:

1. How long did it take for you guys to feel normal again?
2. Do you go to the bathroom more now?

 

[RN4ME]

Post op you could have a few months maybe even a few years....right after i had some issues but they cleared and i went pretty asymptomatic for about 1-2 years with only minor dull pain...but now its back and stricture and so on so it was a fleeting dream at least. If you get your illio valve removed you will have some bathroom sprint sessions. not fun but for me its not horribly bad everyone is different. You hopefully wont have to be colostomy bagged..sometimes they do a temp bag and remove it but i didnt and i hear most dont. Big thing is dont go bananas after your surgery even if you feel 100%...mine took time to come back and had i not acted "cured" i probably would be in a better spot right now. I would go for a low impact style crohns treatment continuously to stay ahead of the game and prolong the remission post op. GL and stay strong you will get some relieve with the surgery so thats a bonus.

 

[bkbigfish]

Surgery was the best thing I have done! I had small bowel resection Feb 16, home 6 days later and I really feel soooo much better! I had an abcess which was leaking poision into my body and really making me sick. I am almost in shock as to how good I feel and it's only been 9 days. I was cut from the bb about 6 inches down and am healing very good. No pain, and hopefully more than soft foods next week when I see the Dr. It seems my case doesn't happen often and it looks like recovery takes a long time before people start feeling better, but I think maybe I was so sick that now I feel normal, cause no more poision leaking in my body. Good luck! Billy

 

[Grey Hawk]

How big are the scars that you guys have? Where are they located?

I'm confused because I see some pictures with a long scar through the belly button, and others with a smaller one off to the side.

 

[bkbigfish]

I had 12 inches of small bowel and 1 inch of colon removed, open surgery, and the scar is from the BB down about 4 inches! I do notice some people having incisions above and around the BB, but this was the best thing I have ever done and its been a whole 15 days post surgery.I would not worry about the scar! just a battle wound with Crohns! good luck! Billy

 

[archie]

my surgery was laproscopic hand assisted, which basically means 3 tiny keyhole scars and a 3-4'' scar through the belly button which has healed really well and actually only looks about 2'' now if even it just looks like a longer belly button.

 

[mrjoe]

my surgery was laproscopic hand assisted, which basically means 3 tiny keyhole scars and a 3-4'' scar through the belly button which has healed really well and actually only looks about 2'' now if even it just looks like a longer belly button.

that's very similar to what my son had back in october.. he's doing very well at this point.. Thankfully!!

/jc

 

[lseibert]

Grey Hawk,

Sorry to hear that you need surgery. I had my surgery Feb 19, 2011, I'm 3 weeks out and feeling better every day. I had a Strictureplasty of 15 inches of my terminal ileum.

I started having my first really bad flare in July 2010. Before that I have had small flares with little pain, 3 obstructions with lots of pain and hospitalization. So, after trying Remicade and Predisone, my pain came back, and I could only eat rice and liquids. I won't lie and say the surgery was a breeze, but I feel so good and my doc says I'll probably be symptom free for 10-15 years! I'll take it any day!

I have been introducing new food everyday and nothing has bothered me, I can hardly believe it! No more Ensure for me!!! I'm starting to exercise and feeling better everyday.

Good luck to you with whatever you decide. As far as I'm concerned, this disease only gets worse, even when you find meds that make you feel better. Then, most of us end up with surgery anyway. You are lucky you haven't had tons of pain and hospitalization before yours.

:goodluck:

 

[archie]

that's very similar to what my son had back in october.. he's doing very well at this point.. Thankfully!!

/jc

I'm glad to hear that it really feels like it is a distant memory!! hope he keeps well x

 

[lostpanda]

Hi all, my crohns diag 98 immediately placed on high dosage of Pred (60 to 80) and asacol daily. I cycled on and off more on Pred until 2004. My problem seemed to be centered in the iliem section of my large intestine.. It finally became so out of control with deep pain and bleeding I had my first surgery that removed about 1 foot of lg intestine. After a month, my symptoms returned. After heart attack in 05, my crohns symptoms were non stop until 06 when they removed my entire large colon, peace at last. The post op problems; getting use to my ileostomy and muscel and joint pain from withdrawing from too many years on high dosages of Pred. At its worse, it took two hands squeezing a door knob to turn it. It took almost a year for my body to start producing its own version of pred. I am completely off all crohns meds except 1 mg of pred a day just for good luck. (My doctor didn't want to rock the boat) Surgery was a huge step but for me I thank God for two great doctors that pointed me in the right direction. Best of luck to any that dare to take the plunge.