Thinking about surgery (obstructive stricture)

[Crohnies]

Hey guys, I just made a huge long post about my situation but I was logged out in the process and it got deleted , so I am going to give the abridged version of my story.

First of all, I have been a long time lurker here and want to thank of all of you as you have been a wonderful source of knowledge for crohn's sufferers everywhere.

Abridged version of my story:

Diagnosed with Crohn's in 2008 after a year or so of misdiagnoses
Flaring about every 8 months thereafter (treated with Pentasa/Prednisone) Until 2012
Major episode w/ a lot of upper GI bleeding in 2012 after a flare, hospitalized for a week and eventually put on Remicade
Remicade has been a godsend since then, no active disease for ~2.5 years, nearly normal life, until recently
Still no active disease but had a full small bowel obstruction 6 months ago out of nowhere which left me hospitalized for a week
Treated with NG tube and cleared on its own
Slowly eased back into normal life and everything was going well until 3 months ago
Felt signs that I was becoming obstructed again, X-ray confirmed, GI told me to try liquids temporarily and it seemed to help but as soon as I ate solids (even soft), symptoms returned
Consulted with surgeon but he was hesitant as w/ crohn's he wants to wait until medically necessary
Blood tests and colonoscopy still show no active disease but the 'partial' obstruction is continually recurring anytime I eat solids so I have to alternate between days of 2-3 days of liquids and a day of solids
Feel like I'm not getting any better and am getting frustrated + fatigued
Have been considering opting for surgery as I have read of success stories with people that have no active disease but suffer primarily from residual scarring
Wanted to post here to get some insight/thoughts on opting for surgery for people in my condition

I apologize for the format of my post but I wanted to give you the jist of the situation without having to retype out the entire post again.

Any help/opinions would be greatly appreciated. Also let me know if I need to clarify anything as I wrote this relatively quickly and may have left out some details.

Thank you guys!

 

[worriedboy]

Hi,

So I am not following - is your stricture has a scar tissue ?
I dont know at all if this is your case, but what you describe is a stricture that is very much became fibrotic; this part does not respond to meds any more, obviously.

Now anytime Crohns gets active the inflammation further narrows the stricture, causing your obstructive symptoms. When inflammation goes away, the fibrotic part is still there but wide enough to let food go through.

Again I am not sure if this is what's going on - was your doctor able to say how much of your stricture is scar tissue ?

 

[Crohnies]

Hi,

Thanks for the reply. Yes, I believe my stricture is entirely due to scar tissue because I haven't had any signs of active disease in the last couple of years. I'm not entirely sure why it was fine all this time and started becoming an issue as of late but I got scoped and blood work done and the disease is still inactive.

 

[UnXmas]

Can they do any other tests to assess the problem?

Have you considered seeking another opinion from a different doctor? Not because your current doctor may be "wrong", but because sometimes there is more than one way of approaching the problem, and you may find another doctor has a way that is better suited to you. E.g. some patients see surgery as a last resort, others see it as the quickest way to just solve a problem and get it over with.

When I had a small bowel obstruction, there were a few tests they did to assess it, including having me drink something (I'm sorry, I can't remember what it was) then taking X-rays to see how far it was getting through my digestive tract and exactly where the problem was located. The idea was to then see if this changed by running the same test the next day. In my case, the surgeon was reluctant to operate because of my poor state of health at the time (another factor for you to consider about yourself). However, my intestine perforated, so the decision was made for me and my surgeon.

In my case, the surgery was successful, I recovered very well, and have had no problems since (this happened last Autumn). Prior to that surgery I'd had regular partial stoma blockages - not quite the same thing as the small intestine blockage, but that surgery fixed both issues and I've had no more partial stoma blockages either.

So surgery has been very successful for me, but you obviously have to consider whether factors are different for you, e.g. are you in good health to have a surgery, are you risking worse problems if you don't have surgery to correct it now, what other ways of treating the problem are there, how major would the surgery be, etc. You'll need a doctor to help you answer these questions.

I've found that surgeons often see surgery as the best solution to problems that other doctors want to treat non-surgically, so the fact that your surgeon wants to hold off on surgery may be significant, but if you're having doubts, you may want to: 1. See a different doctor for another perspective. 2. Ask if more tests could provide more information before you decide. 3. Ask what your other options are and how long you should try them for before you'll be able to see if they're helping.

 

[UnXmas]

Also how severe are the symptoms you get when you eat solid food? Have you tried progressing from liquids to soft foods, to a low fibre/low residue diet under medical supervision? Malnutrition and weight loss may well become issues if you continue having these problems with food. What liquids are you tolerating at present?

 

[Crohnies]

Thanks for the replies. I might have to consider getting another opinion but I trust my GI and have been with him for several years. I've just been frustrated lately. I can tolerate liquids fine (with the exception of dairy products) but as soon as I eat solids for more than a day (even low residue) I end up feeling 'tightness', bloating, constipation, and the occasional waves of pain associated with an obstruction. My reason for considering surgery stems primarily from the fact that my condition is not really improving. While a liquid diet can help me maintain my current state, it's serving as more of a bandaid than an actual treatment. Perhaps I need to get more information from my doctor.

 

[Fernando1]

You are on the brink of a full obstruction that may last more than a week. I have been there exactly where you are and eventually had to have emergency surgery. The risk you take is abdominal perforation which is extremely dangerous. The fact that it is recurring and that you are constantly on liquid diets is that you are delaying the inevitable.

I am heading for another obstruction as soon as there is a lot of pain, start vomiting and no output on the other end it is undeniably time for surgery.

Good luck