Strictures... what's been your experience?

[TammyR]

I've just recently been in hospital with a couple of small bowel partial obstructions. Pain was my main symptom and my white cell count was elevated. Damn emergency doctor tried putting in my (first) NG tube and I just couldn't do it. My gag reflex is strong and I pulled it out twice oops.

Anyway, the CT confirmed a deterioration finding multiple skip segments of distal small bowel disease. Distended terminal ileum (3cm) and partial obstruction about 20cm proximal to terminal ileum.

I improved after about four days on IV hydrocortisone and came home on a tapering dose of pred from 50mg to 0 close to Christmas. I've also had two Remicade infusions and my third loading dose in three weeks. They tell me the pred is to get my in remission and the remicade is to keep me there.

I haven't had any vomiting and the diarrheah seems to have settled over the last couple of days. The pain is different now, more sharp upper right but much more tolerable with just panadol and I'm back at work albeit exhausted.

Anyway, my long winded question is - how has this ended for you in the past? Surgery? I feel like it's inevitable but I'm avoiding it for as long as I can. The surgeon mentioned strictureplasty as an option, or resection but I'm so scared of needing a pouch. Please help to reassure me, tell me your story.

 

[Pug Gamer]

I have a 33cm stricture in my terminal ileum. They thought it was a lost cause and would have to be surgery but being on imuran and steroids has reduced inflammation to slightly highetened (versus very high before) and helped my stricture alot. But it does take time, a year of meds so far. But recent tests show my stricture is improving, it hasnt turned to scar tissue either so they think its working. But having had horrendous obstructions at its worse, 2 in 2 weeks im now down to every 4 months. Having just had a bad reaction to cross contamination which was exactly like a bad obstruction (12hrs vomiting, undescribeable pain) i think while we have strictures we always have a hard time of it. Random days of pain, nights awake from pain etc. I do wish you luck with whatever plan of action you go with. And if medication could work with yours, i would try because im glad i havent had to have surgery.

 

[TammyR]

Thanks so much for taking the time to reply. They think a lot of my narrowing is likely to be scar tissue so the meds are aiming to reduce the new inflammation. They think I have a tendency to stricture unfortunately

 

[DEmberton]

I went from being told I had a stricture and that it was Crohns to having surgery 6 weeks later. The consultant said that they could try to treat it with drugs but in his opinion by that stage surgery was the best option. And I think that was the right decision as I probably would have gone through another year of misery and ended up having surgery anyway. Whereas 2 months after the surgery I'd regained most the weight and was feeling completely healthy.

 

[SammyD]

I have a 6cm stricture in the terminal ileum but so far have avoided any obstructions. I have discussed surgery but I started humira and was starting to do well on it so decided to postpone any surgery for now. My gastro did say however that the location of the disease means it would be a resection only (no bag). I could also opt for a strictureplasty.

I've also just been in hospital a few weeks ago with a flare but luckily no obstruction, just really bad pain and bleeding from a new area of disease which needed some IV steroids. I think eventually I will have a resection as my crohns is super hard to control and I wonder if I would be better off just having it removed and seeing if humira has a better chance of working once the damaged part is gone. Apparently with patients on biologics they're finding people are able to stay in remission for decent amounts of time after surgery (I'm not getting past 6 months at the longest at the moment).

Hope you're feeling better!

 

[shamrock15]

I have stricturing crohn's - diagnosed long before remicade was an option. Over the course of 4 surgeries to deal with them, I have had 6 resections and I believe about 20 strictureplasties. I know what you are going through. Surgeries were necessary to deal with most of mine due to extensive scarring.

Here's the good news. In the time I have been on remicade and azathioprine, I have not had a single recurrence. Remicade is supposedly excellent at preventing strictures from forming and it certainly has that effect for me. If the surgery is done in tandem with preventative medication, I think you likely have a bright future ahead of you. I have had over 4 feet of bowel removed and do not have a pouch, so given your description I wouldn't see that as a likely outcome (there may be other factors, but it doesn't seem to strong based on what you have written). I had another 2 surgeries for a temporary pouch and its reversal. Honestly, they are pretty amazing once you get used to them. After about the second week there was a lot that I preferred about the pouch.

Therapy overall has greatly improved in the last decade. Hope you feel better soon!

 

[TammyR]

Can you please tell me more about the resections and strictureplastys you have had, particularly recovery and pain after?

 

[shamrock15]

Two surgeries with two resections each, I think it was about 10 strictureplasties on the first, another 5 on the second. Two more resections done after that with a couple strictureplasties on both. The sutures on the last one pulled through due to 1+ year on prednisone, resulting in my 5th and 6th surgeries for the ostomy and its reversal. I don't know all the details on length involved on the strictureplasties.

As for pain, I do have some recollections of post surgery being immediately very painful (no surprises there), but I have a pretty good tolerance for pain. I have always used the morphine drip instead of epidural and it has worked very well for me. I have almost always been off pain meds within two or three days of the surgery. Coughing after that still really hurts. Overall, the pain for me settles pretty rapidly. There was discomfort for another couple weeks as swelling in the abdomen subsided, but nothing really excessive. For me, the pain in this phase was less than the pain I had with the partial obstructions. I would guess that in this regard it is similar to what women say about childbirth, that you tend to forget it soon afterwards. I think I recall some of the first couple bowel movements being a little painful afterwards as well as parts of the bowels wake up again, but that too passed.

If it is only a couple spots you need looking at, you might be able to have your surgery laprascopically and it should speed your healing. Mine were all open surgeries, and I was able to resume pretty much full activity within 6-8 weeks (including canoeing and hockey). I understand fear and concern going into such a decision, but you have probably already dealt with more pain from crohn's than you will likely experience in recovery.

 

[Echodog]

I've had many partial obstruction and actually just had 1 this week. Usually a few days if IV fluids does the trick. It hurts like hell. Hope you are feeling vetter

 

[TammyR]

I just had my follow up appointment with the Gastroenterologist. He is happy with my progress (no diarrheah/reduced pain) since starting the prednisolone and infliximab combined. He feels quite confident that I will be a 'responder' to the meds and agrees to avoid surgery until essential. I'm having an MRE in a few weeks and he'll meet with me after that to discuss any deterioration since the last scan in January 2016.
I took 2 x restavit last night to help me sleep as I'm finding the pred is keeping me awake but I'll never do that on a work night again as I have struggled to wake up all day today!

 

[Grant]

Hi TammyR. I had strictures on & off for 15 years. 3 bowel obstructions & 2 of which required surgery. I've always been ready to try dilatation during colonoscopy to widen them but scar tissue can be very difficult with a tendancy to collapse & tighten again. Mine improved 1st with Humira which I started in 2010 6mths post surgery. But an infection meant I couldn't inject for about 6weeks & in that time the Crohns came roaring back & I had another stricture surgically removed in 2012.
I was worried last year when the Humira failed but thankfully & not a moment to soon I started Inflectra & imo this has helped heal any narrowing I had.
Surgery used to be a last resort but I think thats changed with the availability of keyhole surgery. Obviously not something to be taken lightly but neither is an obstruction which can be deadly.
Particular care to what you eat I found to be very important. As little as possible fibre, plenty of water which is massively important & ease back on loperamide if you're taking it was the advice I received.
Very best wishes
Grant