Partial stricture - when is surgery necessary?

[Brad P]

Hey guys

Late May and most of June was rough. I had bad pain above my naval and I figure 19 days of GI bleed. Boiled macaroni gave me pain. I survived mostly on shakes. I ended up getting a blood transfusion late June. Prednisone I started May 27 (40mg/week taper by 5mg/week) didn't seem to do much. CT scans seem to suggest a stricture just down my jejunum (my jejunum is joined to my stomach, roux en y bypass). The scan showed a spot of distending of the bowel, but my GI couldn't get the scope down that far to see during an endoscopy.

In any case, July has been much better. I did have 5 days perhaps of GI bleed that required another transfusion but I didn't have much blood to spare. I am eating solid foods again but being careful. However, I still feel I have a partial stricture as I feel food pushing through, I have liquid in my stomach hours after eating (stomach sloshing), and some mild occasional pain. But I am getting 3 decent meals a day in me plus a snack or two. But I am only eating 60-70% of my normal capacity.

My GI has referred me to my surgeon. I've had two surgeries in the past and both times it was critical situations. This doesn't feel critical but I feel my recovery is at an impasse. I don't feel bad enough for surgery but not good enough to get on with life (I am on sick leave at present). It's not known if the stricture is inflammation or scarring, or will I continue to improve even if slowly.

Can anyone relate to my situation? Any advice?

Thanks

 

[ronroush7]

Are you on any type of biologic? You said they are not sure if it is inflammation or scarring. Is there any testing they can do to see which it might be?

 

[ronroush7]

You mentioned in one of your other posts you mentioned about the doctor not being able to do full tests because the scopes wouldn't go all the way through . Did the doctor mention a blockage?

 

[ronroush7]

Forget what I said about the blockage.

 

[Brad P]

I am not on a biologic although my GI is consulting with doctors in Toronto to see if I am a candidate. I had cancer in 2008 so my risk for cancer again was high if I went on a biologic. But it's been 7+ years now so the risk for me now may be like anyone else taking it.

I read posts by people with blockages/strictures saying they are vomiting, pain, D, heartburn etc. My bowel movements are regular (every morning), I have never vomited, no heartburn, and my pain is all but gone. I'm left with succession splashing in the stomach and can't eat as much as I use to. I do feel the bulging as food passes through and get somewhat distended which would indicate I have a stricture partially blocking my bowel not too far down from my stomach. That's my theory.

 

[ronroush7]

If your doctor says it is okay , I was wondering if a biologic combined with a steroid or imuran might be good bit you need to ask your doctor.

 

[Justanothercp]

Brad,
For me, it came down to a quality of life issue. Mine never got emergent. But my marriage, work and just general quality of life were suffering, after a couple years, it was clear it wasn't going to just get better....
Good luck to you.

 

[Brad P]

Brad,
For me, it came down to a quality of life issue. Mine never got emergent. But my marriage, work and just general quality of life were suffering, after a couple years, it was clear it wasn't going to just get better....
Good luck to you.

So did you have surgery to correct it? What did they find?

 

[DustyKat]

Hey Brad P,

Any chance of having a dummy run Pill Cam to see if you can get the real thing done? Or failing that how about an ultrasound targeted at the area already identified. Just a couple of ideas that might help make things a clearer for you in what you are dealing with.

I don’t have Crohn’s, my kids do, but both have had surgery. One was an emergency and the other planned. I don’t think I need to tell you which is preferable!

So my scenarios on what to do/think about would be:

Having had surgery in that area already it would be hard to rule out scar tissue entirely as feeding into your issues. The question is, is it inflammation alone, scar tissue alone or a combination of both. If it is inflammation alone then meds would be the way to go. If it is scar tissue alone then nothing will fix that except surgery. If it's inflammation or a combination of both then...

If you are managing at present I would let sleeping dogs lie to buy yourself some time to see what may be available medication wise. Are steroids an option? Maybe get on some Pred to see if that improves things, if it does it may give you a clue that inflammation is the problem, or at least part of it. If it doesn’t improve with meds then you are likely dealing with scar tissue...

Which then brings you to how you are coping with your situation at this point in time. If you are managing and feel you can live your life satisfactorily then I would wait. As you well know, once that piece of bowel is gone it is gone. BUT if you aren’t coping well and/or your symptoms escalate I would be having surgery. Far better to tackle the problem under controlled conditions as opposed to emergency ones.

Lastly, I would see the surgeon anyway. Touch base with them, suss out your options, talk things over and if you decide against it now at least the surgeon is aware of your current situation and your history should you need him/her further down the track.

 

[jonique]

Brad, if you do the Pill Cam, make sure to get the Dummy Pill Cam first as DustyKat suggested. I learned this the hard way in May when i had a pill cam that got stuck, twice, before finally exiting and leading to two weeks of sick leave while i recovered. it was due to stricturing, and now I am seeing a surgeon next week re: resection. This will be my second one. My GI said it is only going to get worse so it has to be removed. I've lived with discomfort for so long I don't know what normal feels like and that makes the decision harder.

 

[jcashen87]

I just had both my scopes today and the upper was fine but the lower he couldn't get past the end of the transverse colon because of a stricture. Food has been hurting going through for years and my primary Dr kept saying IBS. He took biopsies of the stricture didn't say if it was Crohn's until biopsies come back.

 

[ronroush7]

Sending support

 

[Brad P]

We don't have the pill cam in my province in Canada.

I saw my surgeon yesterday and he says I am not bad enough for surgery. He rather see that I have tried biologics or other drugs first. My GI is determining now if I am a candidate for biologics.

It's still not known if this is inflammation or scarring. I am sort of leaning towards inflammation. My history suggests scarring doesn't cause pain. I had a stricture in 2010 that left a 2mm opening but didn't cause me pain. For me pain usually comes with inflammation. Back in June it was really bad pain and GI bleed and I could hardly eat solid food. It's been weeks since I had any sign of GI bleed and the pain is only mild now but late in the day I get distending/swelling of the abdominal area, but I am eating solid food again at least.

 

[Justanothercp]

So did you have surgery to correct it? What did they find?

Sorry for my delayed response...
Yes, I had surgery about 11 years ago, a rather large resection. My MD told me by the look of the intestines, I should've and could've done it sooner.
I have been doing ok since. I still have to take a lot of meds, really restrict my diet and I have had a couple partial obstructions since. But, I'm living my life and able to work, play and be social....
Good luck

 

[JackG]

Brad, I had two hospitalizations for strictures within three years of each other in 2010 and 2013. They were at the site of my ileostomy in 1982, after which I was fortunately reconnected. If I remember they said the scar tissue itself had gotten inflamed, and I would probably always have it at that site. That's why for Crohn's patients surgery is always last resort.

Surgery was certainly on their minds and a surgeon was called in both times. But my GI guy resisted, pumped my stomach and put me on prednisone. Within a couple days both times the stricture relaxed, or "unkinked".

A month or so later I had my yearly colonoscopy and he said he ballooned open the stricture, which had shrunk down to almost 1/4" diameter. After the second one he put me on Humira. I've been better and more functional ever since, but of course we're never trouble free.

Sugar free candy or even Diet Pepsi cramps me up with terrible gas. I have to avoid dairy and now even coffee. But I have a normal life for the most part. Be warned that's its very difficult to retire on one of these biologics, because Humira is $4000 a month for two shots.

 

[ronroush7]

Brad, I had two hospitalizations for strictures within three years of each other in 2010 and 2013. They were at the site of my ileostomy in 1982, after which I was fortunately reconnected. If I remember they said the scar tissue itself had gotten inflamed, and I would probably always have it at that site. That's why for Crohn's patients surgery is always last resort.

Surgery was certainly on their minds and a surgeon was called in both times. But my GI guy resisted, pumped my stomach and put me on prednisone. Within a couple days both times the stricture relaxed, or "unkinked".

A month or so later I had my yearly colonoscopy and he said he ballooned open the stricture, which had shrunk down to almost 1/4" diameter. After the second one he put me on Humira. I've been better and more functional ever since, but of course we're never trouble free.

Sugar free candy or even Diet Pepsi cramps me up with terrible gas. I have to avoid dairy and now even coffee. But I have a normal life for the most part. Be warned that's its very difficult to retire on one of these biologics, because Humira is $4000 a month for two shots.

With some insurances, there is only five dollars copay for Humira.

 

[JackG]

Ron, thats what I'm using while I'm still working and have Blue Cross. I think all of that changes if you go on Medicare.

 

[ronroush7]

Ron, thats what I'm using while I'm still working and have Blue Cross. I think all of that changes if you go on Medicare.

My wife is on Medicare and it seems rougher.

 

[JackG]

I don't know that Medicare is rougher for normal folks. You get a supplement for what's not covered by Medicare, and you live a normal life.

For us poor souls on a biologic, however, Medicare has to blow through the various levels of coverage. That means we have to pay $7000 or $8000 out of pocket in January and February before "catastrophic" coverage begins.
And even then it only covers about half. Then the supplement covers another quarter, and you owe the rest, or $1000. Can you afford $1000 a month for one medicine?

I don't know where social ethics begins or ends anymore when Abbie has hundreds of thousands of patients on Humira for eleven different conditions and they still need $4000 a month for two shots. The Chicago Tribune reports they are making literally billions a year.

 

[ronroush7]

Not right.

 

[jcashen87]

Diagnosed with Crohn's today and simultaneously told I need surgery on my stricture in my transverse colon. We need to do a CT scan to see just how much of my bowel is affected though so man I hope this doesn't get to be a huge removal.

This is my intro to Crohn's and I already have to have surgery. I wish my Dr. were not so happy to convince me I had IBS before. GI said the stricture is too much scar tissue, that it will never heal on its own likely. They don't want to try steroids because of complications they can cause with surgery I guess. Also he said its hard to get people off the steroids. So hopefully if I have to have the surgery it isn't a huge area, thats the thing without knowing, he couldn't get the scope any further past it in the transverse colon. Have to wait and see how much area is affected.

 

[Brad P]

Diagnosed with Crohn's today and simultaneously told I need surgery on my stricture in my transverse colon. We need to do a CT scan to see just how much of my bowel is affected though so man I hope this doesn't get to be a huge removal.

This is my intro to Crohn's and I already have to have surgery. I wish my Dr. were not so happy to convince me I had IBS before. GI said the stricture is too much scar tissue, that it will never heal on its own likely. They don't want to try steroids because of complications they can cause with surgery I guess. Also he said its hard to get people off the steroids. So hopefully if I have to have the surgery it isn't a huge area, thats the thing without knowing, he couldn't get the scope any further past it in the transverse colon. Have to wait and see how much area is affected.

So he saw with the scope that it is actually scar tissue in the traverse colon? What he could see of it anyway. If so, then unfortunately surgery is the only real option. It will be short term pain for long term gain.

 

[shamrock15]

Don't fret the surgery - 4 of them here to get rid of scarring. If your doc combines it with a biologic afterwards it could pretty much stop crohn's in its tracks for you. I have had 6 surgeries in total (two were for an ostomy and its removal) and not one of them has come after I started the remicade/imuran combination. If the affected area is not large you could conceivably have almost full function afterwards.

 

[jcashen87]

Thank you guys really appreciate the words of wisdom.

 

[DustyKat]

Unfortunately some people will require surgery at diagnosis or soon after. Both of my kids fall into that category but they have done well since.

I wouldn’t necessarily agree with the statement that it is hard to get people off steroids. Some people definitely but the role of the other medication is what is called steroid sparing, so keep inflammation in check without using steroids. This will come into play post surgery.

The thing to remember with scar tissue is that nothing will heal it or penetrate it. If you are having symptoms and it is down to scar tissue then yes, your only option is surgery.