When is the time to consider surgery?

Can you suddenly die from Crohn's Disease, for instance, because of bowel obstruction? A CT scan back in 2007 shows that I have stricture(s) in my small bowel for at least the past 12 years. The first episode of partial bowel obstruction occurred in 2010 when I had waves of abdominal pain and I vomited in the hospital. I hate the nauseous feeling the most, because I think that's a sign of obstruction. I have never had a surgery before.

During the past 2-3 months, I experienced a lot of gas, bloating and occasionally nauseous feeling. I asked my GI last December when it will be time for my surgery. He said my 6 strictures are getting worse and may need a surgery within 5 years or so. But it is hard to say exactly. I have taken Chinese herbs to manage my Crohn's for almost 25 years.

I have always wondered when I should request a Crohn's surgery. Should I ask surgery from my primary care doctor or my GI? Should I consult a Crohn's surgeon first? My GI mentioned that I might get a lot of "mileage" out of this surgery. My primary doctor is even more optimistic saying I may never need a Crohn's surgery. I am more pessimistic though.

Any thoughts would be appreciated. As a breadwinner for my family, I just do not want to lose my job because this Crohn's surgery. I am in the U.S. by the way.

Hello, Susie: I was thinking about you and even wanted to write you an email asking questions about my Crohn's, because you have always been extremely helpful to say the least.

I had a normal colonoscopy in November of 2018 with the following finding: "The terminal ileum appeared normal. Biopsies were taken with a cold forceps for histology. The colon (entire examined portion) appeared normal. Biopsies were taken with a cold forceps for histology." Even the biopsies of terminal ileum and right colon were normal from pathological diagnosis.

The Chinese herbs appear to have helped me along the so many years of my Crohn's, because when I was diagnosed in 1994, colonoscopy showed "there were multiple aphthous ulcers in the cecum, multiple ulcers in the terminal ileum, mucosal changes from sigmoid colon to the rectum". Pathological findings in 1994 consisted of focal granulomatous ileitis, focal active colitis with granulomas in cecum and focal active colitis at 25 cm.

Fast forward 25 years later, the colonoscopy was completely normal, so there is nothing to dilate. The weird thing is that my small bowel is getting worse. The following is my MRE report from August of 2018: "Multiple areas of distal small bowel thickening, mucosal hyperenhancement, and stricturing with upstream bowel dilation, for example measuring 2.2 cm distally (series 1500 image 7), with other areas upstream measuring 1.8 cm (series 1500. Image 17), 2.9 cm (series 1600 image 27), 2.2 cm (series 1500 image 27), and 2.6 cm (series 1600 image 6) which are grossly unchanged in distribution from prior. There has been interval increase in small bowel dilation implying worsening obstruction. The terminal ileum is normal (series 1500 image 19). The stomach, large bowel, and proximal small bowel are normal. No fistula or abscess. Bowel motility is normal."

Post Edited (EruditePaul) : 7/18/2019 9:36:17 PM (GMT-6)

No, I have latent TB. In addition, I think most of my strictures consist of scar tissues. I believe I had a partial small bowel obstruction last night. I am going to call my primary care doctor or GI office today. Thanks.

I called my GI's office this morning and left a message, waiting to hear back.

My Chinese herb prescription consists of some 16 different kinds of herbs, mixed together, boiled and I drink the herbal water like tea. I still have some faith in the Chinese herbs, as they helped me with my colon, bought me some valuable time and delayed my unavoidable surgery for years. I plan to continue to use herbs after surgery, due to virtually no side effects. My herbal doctor in China passed away 10 years ago, so I am using the same herbal mixtures for 10 years, which is not good. The mixture is supposed to change according to my symptoms.

My ESR (2 mm/h) and C-Reactive Protein (0.3 mg/L) are always low. Not sure what fecal calprotectin is. My GI wrote to me last year after my MRE in layman's terms like this: Findings are consistent with known Crohn's disease, with multifocal distal ileal strictures with active (but probably chronic) inflammation in a similar distribution as CT from 2012. Increasing small bowel dilation consistent with worsening obstruction. No new areas of thickening. Compared to you last MRI, the degree of inflammation has not changed. In addition, there are no new areas of inflammation or narrowing. However, the prior area of dilation is worse on this MRI, this indicates that you likely now have more scarring which is expected.

HabsHockeyFan: your story as well as Susie's are like a thriller, but informative to me. People in this forum have provided me with the information and support that I need, for which I am forever grateful.

It looks like for both you and Susie, the initial small bowel surgery lasted some 17-19 years without needing another surgery, which is very encouraging to me. I vaguely remember my GI said I may only need one surgery in my lifetime. I know everyone is different and nothing can be guaranteed. But my statistical odd is not bad. The discussions here have changed how I look at the small bowel surgery. I probably have had something like 10 small bowel partial obstructions in the last 9 years. Not sure how long I can put off the surgery. Thank you again.

I would like to post an update after my colorectal surgeon consult:

* Elective surgery generally has fewer complications than emergency surgery.
* I would not develop short bowel short bowel syndrome after my 1st surgery.
* Cannot do a balloon dilation because strictures are too high up to reach.
* Emergency surgery may result in a temporary bag outside of the body, which is less likely for elective.
* Need to continue medicine after surgery to lower recurrence rate.
* Most recent nausea is the likely result of partial bowel obstruction.
* Cannot determine if it needs strictureplasty or resection based on MRI.

After the consult, I am still having the feeling of a used car dilemma: would like to drive the used car for as long as possible before I need to abandon it and buy a new one.

Thank you so much for your reply, Susie!! My six strictures are located in ileum, not in jejunum. That's why upper endoscopy cannot reach and dilate. On the other end, yes, they are in ileum, but not terminal ileum. Colonoscopy can go as far as terminal ileum, but not too much further, I guess. Yes, I have managed my Crohn's with herbs for 25 years, and I vaguely remembered my GI mentioned to me that I might be able to continue the herbs after the surgery.

What do you think of a waste bag outside of the body? Why can't the surgeon reconnect the intestines after a resection surgery, when my colon is in perfect shape? What do you think if I can get a second opinion from another colorectal surgeon from the same hospital, or should I go to another hospital for a 2nd opinion?

Paul, the dr mentioning the possibility of a bag, this is required by his medical malpractice insurance & the law. It's a CYA thing. Any surgery including the use of anesthesia & medications of any kind, they are required by law to do this. I remember the first time I had a surgery, reading & signing the consent form with the list of potential complications scared me more than the actual surgery. Did the comment about the bag freak you out?

My other thought is would your insurance cover the cost of surgery now? They will look for repeated admissions to the hospital for bowel rest, notes from the dr about the severity, is it considered mild, moderate or severe. They will look for things to fit the term is it "medically necessary."

I am all for 2nd & even 3rd opinions when it comes to surger being recommended. Myself, I don't do the 2nd opinion thing until i know for sure I am ready to have it done. I say this because medical treatments change, newer techniques come out replacing older ones & are often better.

An example, I have a lengthy history of knee problems. The last 2 surgeries were in 06, a partial tear of the ACL & another meniscus tear. My knees are bone on bone & riddled with arthritis. Next step is knee replacements. Until my knees affect my daily living & quality of life I will leave them alone. I do a lot of self care on my own. Much like your used car theory. I know what is my breaking point.

Take care.