Another Stricture

[Grant]

DeJa Vu for me. Here we go again. Another Stricture-the absolute bane of my life. 3cm of "acute inflammation" making my life a bit unpleasant atm. Unfortunately in the past balloon dilatation has only worked for a few weeks then back to square one then surgery. Feel low & a bit depressed about this tbh. But I'll get on with it I guess.☹

 

[Grant]

??

 

[Guerrero]

Hi Grant,
I have the same issue with recurrent strictures in my ileum.
If the stricture is due to inflammation, getting the disease under control, could help getting rid of it.
How many surgery you had, and whats your treatment?

 

[Grant]

Hi Grant,
I have the same issue with recurrent strictures in my ileum.
If the stricture is due to inflammation, getting the disease under control, could help getting rid of it.
How many surgery you had, and whats your treatment?

Tks for the reply Guerrero. 4 surgeries so far. The last in 2012. This one is being described as 3cm of acute inflammation. 3cm is just over a inch, how can 3cm absolutely floor me. I thought I'd seen & heard it all with this disease.
Currently on Stelara 12 weekly.
Best Wishes
Grant

 

[my little penguin]

Are they willing to up the Stelara ?
In the US dosing for crohns is 4-8 weeks at 90 mg
They found inflammation in Ds TI after 8 months
Had to increase to 90 mg every 4 weeks

 

[Grant]

Are they willing to up the Stelara ?
In the US dosing for crohns is 4-8 weeks at 90 mg
They found inflammation in Ds TI after 8 months
Had to increase to 90 mg every 4 weeks

Hi my little penguin. I'm seeing the specialist in 4 weeks, but if things continue to go downhill I will try & bring it forward. I used to be on Inflectra, that started out 8 weekly, ended up 4 weekly.
Regards
Grant

 

[Guerrero]

You had 4 surgeries for resection? I guess after the second it was laparectomy?
When did you start with biologics, after the forth surgery or before?

I think too higher levels of stelara may help.

 

[Grant]

You had 4 surgeries for resection? I guess after the second it was laparectomy?
When did you start with biologics, after the forth surgery or before?

I think too higher levels of stelara may help.

Before the last surgery Guerrero. I had a surgery in 2010 but the disease came back in 6 weeks, it was then decided to put me onto Humira. But there was a helluva delay (about 12 weeks before I got started & in that time another stricture had formed. That stricture was removed in 2012.
My 1st surgery was a right hemicolectomy back in 97.
Grant

 

[Delta_hippo]

Sorry to hear your news Grant this disease is the gift that keeps on giving. Not. Just wondered if it was worth considering enteral nutrition, a) to try and calm things down and b) to keep strength up in case of operation. I imagine it tastes gross but others might have ideas about brands. Best wishes.

 

[Grant]

Sorry to hear your news Grant this disease is the gift that keeps on giving. Not. Just wondered if it was worth considering enteral nutrition, a) to try and calm things down and b) to keep strength up in case of operation. I imagine it tastes gross but others might have ideas about brands. Best wishes.

I just had to look that up. I don't fancy that @ all tbh. But tks for the idea, I think it'll boil down to 2 things. 1 they'll bring the Stelara forwards to 8 weekly & 2 they'll probably go for a balloon dilatation. I'm willing to try the dialatation once but if it fails then maybe from there consider the surgical route if offered. The reason I say that is because my previous consultant I felt put me through hell unnecessarily by constantly trying the balloon dilatation route. Knowing full well with me it hardly ever works & also I'm pretty much only able to use Picolax for the Colonoscopy Prep. I just vomit Kleanprep & Fleet up & he wasn't keen on the Picolax. So stressful for zero gain. So after about 3 attempts & back to square one he wanted to have a 4th go @ which point I told him NO. I got to the point where I'd rather have it surgically removed. Which is kind of mad but just shows me what we have to go through & put up with because of Crohns. I actually think he was too blasé about it all & if he was in my shoes he would've come to the same conclusion.
Thankyou to everyone whose replied, it means a great deal to me.
Grant

 

[aypues]

For a short one like that they might do a strictureplasty.
I have a 20cm mid ileum stricture that is coming out in August, we think (waiting on a date). Not looking forward to it but hoping it helps!

 

[Guerrero]

For a short one like that they might do a strictureplasty.
I have a 20cm mid ileum stricture that is coming out in August, we think (waiting on a date). Not looking forward to it but hoping it helps!

What are your symptoms? Obstructions etc..?

 

[Guerrero]

I just had to look that up. I don't fancy that @ all tbh. But tks for the idea, I think it'll boil down to 2 things. 1 they'll bring the Stelara forwards to 8 weekly & 2 they'll probably go for a balloon dilatation. I'm willing to try the dialatation once but if it fails then maybe from there consider the surgical route if offered. The reason I say that is because my previous consultant I felt put me through hell unnecessarily by constantly trying the balloon dilatation route. Knowing full well with me it hardly ever works & also I'm pretty much only able to use Picolax for the Colonoscopy Prep. I just vomit Kleanprep & Fleet up & he wasn't keen on the Picolax. So stressful for zero gain. So after about 3 attempts & back to square one he wanted to have a 4th go @ which point I told him NO. I got to the point where I'd rather have it surgically removed. Which is kind of mad but just shows me what we have to go through & put up with because of Crohns. I actually think he was too blasé about it all & if he was in my shoes he would've come to the same conclusion.
Thankyou to everyone whose replied, it means a great deal to me.
Grant

In my case strictures are in mid ileum. Baloon dilatation through colonscopy is almost impossible as it’s too far away i guess (1 meter up the ic valve).
Also I usually develop a lot of strictures, during my surgery (2013) they found out like 7 strictures they fixed through strictureplasty.
2 years later I already developed 3 small bleeding and inflammed strictures.
Now i have strictures and a possible fistula i developed while i was on humira and then entyvio...
Quite a mess. I cant complain much as I have no major symptoms, but the road to a second surgery is close...

 

[aypues]

What are your symptoms? Obstructions etc..?

Intermittent pain, chronic anemia/blood loss, general malaise. No full-on blockages thank god, but the lumen is down to 9mm so that would account for the pain.

 

[Guerrero]

Intermittent pain, chronic anemia/blood loss, general malaise. No full-on blockages thank god, but the lumen is down to 9mm so that would account for the pain.

Sorry you feel that way. The timing of the surgery around august seems perfect then. Hope you’ll feel great after it.

I was also constantly anemic before starting 2 entyvio years ago. Thought inflammation was under control then as hemoglobin was great and pcr low, but aparently not. Hard to understand this disease...

 

[Grant]

In my case strictures are in mid ileum. Baloon dilatation through colonscopy is almost impossible as it’s too far away i guess (1 meter up the ic valve).
Also I usually develop a lot of strictures, during my surgery (2013) they found out like 7 strictures they fixed through strictureplasty.
2 years later I already developed 3 small bleeding and inflammed strictures.
Now i have strictures and a possible fistula i developed while i was on humira and then entyvio...
Quite a mess. I cant complain much as I have no major symptoms, but the road to a second surgery is close...

Guerrero, you've been through hell. 7 strictures all @ once!! I've never heard of that, you take care of yourself & please use this thread to let us know how you're getting on.
Best Wishes
Grant

 

[Guerrero]

Yeah man sounds a lot, but actually the symptoms were the same than having only one and the surgeons didnt seem to be surprised or worried about it... they said they had seen worst cases with more strictures...
that’s what crohns do at the end, in every point you find disease, strictures can develop.

In my case it was on « only » 25-30 inches of the whole gi tract, so i won’t complain much.

 

[Crohn2357]

Yeah man sounds a lot, but actually the symptoms were the same than having only one and the surgeons didnt seem to be surprised or worried about it... they said they had seen worst cases with more strictures...
that’s what crohns do at the end, in every point you find disease, strictures can develop.

In my case it was on « only » 25-30 inches of the whole gi tract, so i won’t complain much.

Hi Guerrero,

I am wondering how things worked out for you. Could you update? I hope you are well.

 

[Guerrero]

Hi Crohn2357,

Thank you for caring about me.

I had a resection surgery in 2023, and things were much better. I started stelara as new treatment to get things under control.

However after few months I started suffering a lot of bloating and gas and some episodes of urgent need to go to the bathroom. I had to find the right dose of Questran to get things better. Now I still have some bad days (especially when my diet is not super clean), but I hope things are under control. My calpro is still very high (500/700) but ultrasounds didn’t show signs of disease 6 months ago, so it’s unclear what’s really going on. I’m waiting for further endoscopic exams.

What about you, do you have similar experiences?

 

[Crohn2357]

What about you, do you have similar experiences?

Well, the fun never ends for us. I am in a similar situation, I explained it in some detail in this thread:

https://crohnsforum.com/threads/ste...oes-it-take-to-notice-the-improvements.87674/

I gave myself a stelara injection about 15 minutes ago.

Since my stricture is in my diverted rectum, I can’t get it surgically removed without taking out the whole rectum and the sigmoid colon. Dilation hasn’t worked, tried two times. Using stelara every four weeks and also rectal meds to get things under control.

Sometimes fecal calpro can be misleading. I’d additionally look at things like serum crp and esr as they are also inflammation markers, also ultrasound and mri imaging; if scopes are troublesome.

I wish you the best.