Seeking advice on surgery for scar tissue

[Shoregirl33]

I'm new to the forum but I'm desperately trying to get as much information as possible to help me make a decision on whether or not to get surgery. I am one of the lucky ones, diagnosed at age 17 I've only been hospitalized a few times. Been on prednisone and Salofalk in the past but have been off meds now for 5 years, no surgery. I am currently 41 and I am having issues with scar tissue and narrowing of my intestine, there has been no signs of inflammation for almost 20 years! The symptoms have worsened over the past year and the narrowing is getting worse, I've had blockages that result in a lot of pain and nausea but no vomiting. I just put myself on clear fluids and rest and suffer through it. I take Restore-A-Lax almost every day to try to prevent issues. My Crohn's Dr. has suggested surgery to remove the scar tissue and relieve my symptoms, he feels it's better to get the surgery now while I'm young and fairly healthy. After going to the surgeon to find out details of the surgery I'm freaking out and confused as to whether it's worth the risks involved, yes my quality of life has suffered over the past year but is it really bad enough for surgery? The surgeon is very neutral and says it's entirely up to me which is not helping with the decision, he does however feel that the surgery is probably inevitable at some point. I'm looking for people with similar situations who have both opted to have surgery and to wait on surgery and what your experience has been. I feel like the more info I can collect the easier it will be to make this seemingly impossible decision. Any advice is greatly appreciated!!

 

[hawkeye]

I had surgery for a stricture last year after having recurring issues /"flares" from the stricture since late 2010.

Yes, the surgeon is correct you will likely require surgery. One thing to consider is that it is better to have a planned surgery rather than emergency surgery. We first started discussing surgery in 2011 and I decided to arrange for a surgical consult in late 2013. The quality of life effects just got to a point where it was time to have the surgery. There are risks with surgery, but there are also risks with waiting - such as the bowel beginning to perforate.

Not sure if you have checked these out but -
Link to my experience - http://www.crohnsforum.com/showthread.php?t=59203
Link to other surgery stories http://www.crohnsforum.com/showthread.php?t=30212

 

[DEmberton]

I had surgery for a stricture last year. I know it sounds scary, but actually wasn't that big a deal and completely worth it. By that stage I'd got seriously skinny, anaemic, extremely tired, and just couldn't have continued like that so was happy to say yes. Actually your description sounds about where I was 2 years before (at 41 as it happens), except I still thought it was just IBS and it took me losing weight to go the doctor and begin the long process to find out it was Crohns. Do I wish that I could have had the surgery 2 years earlier and not gone through all that? Of course.

 

[Crohns08]

I have never had surgery for strictures but going into the medical field studying to being a nurse and eventual PA, it makes more sense to go under while you are younger and better health. Your recovery won't be as difficult as if you were to wait and the risk for complications and infection rises the older you get, not to mention your immune system doesn't function as well the older you get just due to the aging process. Emergency surgery is also harder to recover from than a planned surgery. Just some things to think about.

 

[Sunshine333]

I'm new to the forum but I'm desperately trying to get as much information as possible to help me make a decision on whether or not to get surgery. I am one of the lucky ones, diagnosed at age 17 I've only been hospitalized a few times.

I have recently joined the Crohn's Forum. I have multiple strictures or constrictions in my small bowel. My GI doctor has been doing dilation to enlarge these strictures for me from time to time. Surgery is usually the last option if other alternative attempts have been failed (medication, diet control and dilation). Since each IBD patient's medical condition is different, it's best to check with your doctor to see if other options are possible besides surgery. Hope it helps.

 

[JenniLenni]

I agree, it totally depends on your medical history along with where the structure is located.

I am getting surgery on Thursday to remove scar tissue that has, once again, caused a stricture at my terminal ileum following an intense flare up. Crohn's is in remission now and has been for the last few months. (Confirmed no inflammation from a colonoscopy.) It narrowed at the site of previous surgery, with lots of pain after eating anything that isn't a liquid, nausea.. There is only one stricture, for the two previous resections only a small portion was removed.

This time I tried dilation because my previous surgery was only 4 and a half years ago; I wanted to buy myself some time. My surgery before that was almost 15 years. Unfortunately, the dilation worked less than two weeks and has resulted in more pain than before the dilation.

I could have gone in for another dilation, but I don't want to wait on pins and needles to see how long it lasts.

So, I went to the surgeon my GI recommended for a consult a couple weeks ago. He spent 40 minutes with me talking about my history and technique he'd use. I now, can't wait to get this over with to move on with my life again.

If you go for surgery my biggest recommendation is to insist on laparoscopic surgery. If you only have one stricture this is totally doable! If the surgeon says no.. Find a new one! I made this mistake with my second surgery. I asked, he said no because I had too many previous abdominal surgeries (c section, appendectomy, and resection). This new surgeon said he is very optimistic he can do it through scope. Of course there is a chance he won't be able to, but I admire that he is going to try. This means less hospital time, faster recovery, and less chance of infections from surgery.

I honestly think the last surgeon wasn't as familiar with Crohn's. I wish I had spent more time finding someone comfortable with laparoscopic surgery and who understands the disease.

I wish you well!!

 

[Sunshine333]

Have surgery or no surgery, it all depends on each IBD patient.

I have Crohn's for over 30 years. My surgeon did a strictureplasty trying to enlarge multiple strictures for me last year, but he was only able to do one due to abundant scar tissue from previous surgeries. The remaining strictures have to be dilated as required, may be once a year. My recent colonoscopy result shows there are ulceration in my small bowel. My GI doctor advised me to take Humira in addition to my current medication, Imuran. Therefore, I am coping and treating my present strictures through medication, dilation and low fibre diet. Surgery is used only as my last option or for emergency situation.

 

[orangesunflower]

I had surgery for my ileum stricture four weeks ago and am doing well and have been since 2nd week. I wasn't as bad off as others on forums, but I figured I was tired of the discomfort. And I didn't want emergency surgery. I still have some mild discomfort but I have heard it takes a while to heal completely. I eat whatever sounds good but I add a smoothie a day to get more nutrients. I am going to get back on Humira again in a couple of weeks so it doesn't come back and develop into more scar tissue. For me the worst part was the prep the day before. I think because of my stricture it would not pass through fast enough. It did not stay down! Luckily after my husband called my surgeon, I was told I didn't have to finish the prep mix and I was still able to have the surgery. With the pain meds I was given I didn't think the post-surgery was that hard. And after the first week I was off most of them.

 

[rorho19]

I don't understand how shoregirl33 can be told her strictures will worsen over time if she has no inflammation...how does the intestine go on getting narrower of there is no inflammation and healing to do more scarring?

 

[lmb100]

They do. I had surgery in remission in 2003 for scarring in the transverse colon. I decided to do it because my doc said the diameter would likely continue to shrink and I might find myself having emergency surgery in the future. Since then that section has tilted to the left and appears to be my left decending, and the strictures have contracted. It does not affect my bowel fuinctioning, yet, but sugery is not a cure-all.

 

[produff26]

Surgical decisions are never easy with Crohns

I was diagnosed in 1986. At the time, I lost nearly 100lbs (Im 6'6", 250lbs). I was a college athlete. I ended up hospitalized but responded well to prednisone therapy. No surgery at the time. Was on prednisone for years. had continuous battles with Abscesses and fistulas.

In 1996, I was experiencing increased symptoms. Imaging showed several small bowel strictures and I opted for surgery. A year later, I had a complete obstruction and had emergency surgery. I had a temporary ostomy which was reversed 3 months later.

10 years ago, I started REMICADE. No more abscesses or symptoms. I have been doing great. Now, 20years after my last surgery, I have scar tissue that is causing me a lot of problems. I am opting for surgery but the decision was not easy. Dilation was a possibility but after going through an emergency surgery and having an ileostomy, I would rather be able to plan a surgery than not. Reason? Having the right surgeon makes ALL the difference!

If you wait for an emergency, You hope that the guy operating has experience with crohns. If you plan, you will have time to do research and have a specialist do your surgery.

 

[lmb100]

Hmmm. My gastro says not to try to remove the adhesions because it will just cause more of them. In what part of the country are you?

 

[produff26]

Im in NYC. Your GI is correct. No guarantee's with surgery and adhesions can and do return HOWEVER since I like to travel, the prospect of being operated on outside of the US is scary to say the least!

Im fortunate that I have access to some of the best Colorectal surgeons in the world. Id rather take my chances here than risk an emergency anywhere else.