Stricture Advice- Surgery or not?

[JessicaGrace24]

Hi All. I have some upcoming appointments with both my GI and Surgeon next week and was hoping for a little advice. At the beginning of the month I did a fecal cal test that according to what my GI told the MOA was essentially normal (I'll find out the number at my appointment) which means that Stelara seems to be working for me. However I am still having stricture related symptoms despite this and taking Restoralax (Canadian version of Miralax) such as mild bloating, cramping, and narrower stool (not pencil thing exactly but definitely finger width thin). Sometimes these symptoms get worse than other times if I'm not careful. All of the tests I've done have confirmed that the stricture is fibrotic tissue and has been non-transversable even with a smaller scope so dilation has not been an option. My stricture is 3.5-4cm long in the TI (I possibly have more than 1 stricture in the ileum and a 4.2 cm stricture in the jejunum, both of which they were hoping were mostly inflammatory but every once in a while I still notice cramping there as well.) My question is, would you guys do surgery even though the strictures are short and symptoms relatively minor compared to most or not? Would you push for stricturoplasty rather than resection? My main reason for opting for surgery would be because I want to not be so limited in my diet (I miss olives, raisins, lettuce, peeled raw apple, berries, oatmeal etc) and don't want to be hospitalized with another obstruction in the future. I'm 27 and just want to feel normal again and get on with my life but don't want to make a rash decision either.

 

[JessicaGrace24]

I am going to ask my GI to test for SIBO since strictures can lead to this and I am having trouble with fructose especially and bloating and cramping are symptoms of SIBO. I am also still experiencing debilitating fatigue despite taking B12 and Iron (with vitamin C for absorption). Can strictures cause fatigue or would this more likely mean that SIBO is a possibility?

 

[Guerrero]

What does surgeon suggest?
Have you already had an obstruction yet?
For how long have you been on stelara? If not much i’d wait a bit and see...

 

[JessicaGrace24]

What does surgeon suggest?
Have you already had an obstruction yet?
For how long have you been on stelara? If not much i’d wait a bit and see...

Yes. I had obstruction at diagnosis almost three years ago and again this Spring. Been on Stelara since the beginning of August and it is my second to last med available for my type of Crohns. Unless I'm really careful and 100% perfect with my diet I get structure pain and I'm just finding that that is a lot of pressure on myself and a lot to manage. For the most part the pain is not enough to keep me home from work but makes me exhausted and I don't do much outside of work. The surgeon already said my TI structure needs dealing with as we know it's fibrotic and won't respond to meds but I've read about people living with strictures for years without surgery. Is this because they are mainly inflammatory and they don't really notice symptoms when not in flare? Mine is fibrotic. I just don't want to have to do low fibre/ residue the rest of my life.

 

[emmaaaargh]

Most people with strictures who live with them for years do so because they’re not severe enough to cause symptoms. You’re already getting symptoms, and it seems to be impacting your quality of life quite a bit, especially since you’ve experienced two obstructions. Having to adhere to a restrictive diet 100% so as to avoid pain or obstruction is really not a viable solution: it puts terrible pressure on you, as you said, and it’s not especially healthy to be low-residue forever (it’s technically possible, but quite difficult and repetitive!)

At the start of this month I had surgery for my strictures. We did a strictureplasty because I had an area with several strictures in a row, but some parts were unsalvageable and had to be resected. So I know how it feels to undergo these surgeries – except in my case things were bad enough that I didn’t really have a choice. You can always ask your doctor about the possibility of strictureplasty, since it’s good to conserve bowel wherever possible! Communication is key so that you're both happy.

In any case, I don’t think you'd be being rash by opting for surgery. It is the only way to deal with fibrotic strictures, and since it’s already impacting your quality of life it’s clearly time to do something about it.

 

[JessicaGrace24]

Most people with strictures who live with them for years do so because they’re not severe enough to cause symptoms. You’re already getting symptoms, and it seems to be impacting your quality of life quite a bit, especially since you’ve experienced two obstructions. Having to adhere to a restrictive diet 100% so as to avoid pain or obstruction is really not a viable solution: it puts terrible pressure on you, as you said, and it’s not especially healthy to be low-residue forever (it’s technically possible, but quite difficult and repetitive!)

At the start of this month I had surgery for my strictures. We did a strictureplasty because I had an area with several strictures in a row, but some parts were unsalvageable and had to be resected. So I know how it feels to undergo these surgeries – except in my case things were bad enough that I didn’t really have a choice. You can always ask your doctor about the possibility of strictureplasty, since it’s good to conserve bowel wherever possible! Communication is key so that you're both happy.

In any case, I don’t think you'd be being rash by opting for surgery. It is the only way to deal with fibrotic strictures, and since it’s already impacting your quality of life it’s clearly time to do something about it.

Thanks so much Emma for the reply and encouragement. I've done some reading on strictureplasty and definitely want to bring it up at my appt, however I think from what I've been told in the past, my affected areas may be too far apart for this to be a good solution but I'll find out at my appt. I'll be sure to ask lots of questions. Hoping your journey to healing after surgery is going well!

 

[JessicaGrace24]

Argh. Very discouraging appt today with my GI. Basically told that my gut microbiome is altered and likely my symptoms are caused by SIBO (which I probably developed from the stricture) and that she didn't think that surgery would fix all my symptoms. Basically I've been told to take a probiotic in combination with a strict low carb higher fat and low fibre diet for at least 3-6 months (which I am only willing to start AFTER the holidays.) She is also willing to try me on the antibiotic they prescribe for SIBO. She is not opposed to surgery but definitely thinks that I should wait and see if doing these things promotes more healing. I get that this will probably help me feel better in the long run but I am sobbing because of how many foods are being taken away because of Crohns. I don't know what to eat anymore. She wants me to try adding cheese for snacks but adding a higher amount of fat to my diet in this form doesn't usually go well. I already use olive oil, coconut oil and eat half an avocado a day. Other low carb and low fibre foods are zucchini and spinach and broccoli and cauliflower but the last two are gas producing and then of course peppers and tomatoes which I am terrified of because of skins and seeds. I already eat zucchini noodles and pureed sugar free tomato sauce as well as spinach daily but honestly I am just so fed up with this disease and trying to accommodate it so I can heal fully and not getting to eat like a normal person. Anyone have any suggestions? My family is really big into carbs and isn't usually very supportive of any dietary changes I try to make so I don't look forward to telling them about this appointment. By the way, my fecal cal was 181 which is down a bit from where it was. I've been as low as 110 when I'm closer to full healing but she doesn't want to make any medication adjustments because she says it won't fix the problems I have going on. Just feeling really defeated, discouraged and frustrated.

 

[JessicaGrace24]

@my little penguin @emmaaaargh @Guerrero @crohnsinct @Scipio any thoughts? Do you know who on here has dealt with SIBO or done low carb diet?

 

[Jo-mom]

@JessicaGrace24, what was the outcome for you? Did you end up having surgery or just staying on a special diet? Hope all is well.

 

[Walter Jern]

Having surgery is the last option. It is the beginning of another issues.
Refer:
https://gut.bmj.com/content/51/2/152" After ileal or ileocolonic resection there is a 20–30% symptomatic recurrence rate in the first year after surgery, with a 10% increase in each subsequent year. Most patients will eventually suffer recurrence, and a reoperation rate of 50–60% is generally reported. The need for simple and effective prophylactic therapy after bowel resection for Crohn's disease is great. "

 

[Lady Organic]

What about Enteral liquid diet for some time?
https://crohnsforum.com/threads/the-curious-case-of-en-reversing-strictures.85936/The IBD-AID diet may be of some interest to you in my signature

 

[CatLover63]

Argh. Very discouraging appt today with my GI. Basically told that my gut microbiome is altered and likely my symptoms are caused by SIBO (which I probably developed from the stricture) and that she didn't think that surgery would fix all my symptoms. Basically I've been told to take a probiotic in combination with a strict low carb higher fat and low fibre diet for at least 3-6 months (which I am only willing to start AFTER the holidays.) She is also willing to try me on the antibiotic they prescribe for SIBO. She is not opposed to surgery but definitely thinks that I should wait and see if doing these things promotes more healing. I get that this will probably help me feel better in the long run but I am sobbing because of how many foods are being taken away because of Crohns. I don't know what to eat anymore. She wants me to try adding cheese for snacks but adding a higher amount of fat to my diet in this form doesn't usually go well. I already use olive oil, coconut oil and eat half an avocado a day. Other low carb and low fibre foods are zucchini and spinach and broccoli and cauliflower but the last two are gas producing and then of course peppers and tomatoes which I am terrified of because of skins and seeds. I already eat zucchini noodles and pureed sugar free tomato sauce as well as spinach daily but honestly I am just so fed up with this disease and trying to accommodate it so I can heal fully and not getting to eat like a normal person. Anyone have any suggestions? My family is really big into carbs and isn't usually very supportive of any dietary changes I try to make so I don't look forward to telling them about this appointment. By the way, my fecal cal was 181 which is down a bit from where it was. I've been as low as 110 when I'm closer to full healing but she doesn't want to make any medication adjustments because she says it won't fix the problems I have going on. Just feeling really defeated, discouraged and frustrated.

Hello,
I'm new to this online discussion/support group but I understand what it's like to feel confused as to what to eat. When I had a fistula repaired some years ago (did not want surgery at all), the consultant said, "you must eat a high fibre diet for the rest of your life".The problem is, too much fibre gives me stomach ache, bloating, gas and episodes of diarrhoea. I also have acid reflux, mainly at night. My stool shape was discussed by the nurse who showed me on a chart what it should look like. "More fibre" she said, so I continued with the baked beans and the wholemeal bread. Now, I'm reading that I should eat a low fibre diet when I have a flare up. No wonder, bowel conditions can be a pain to manage in the real world and who wants to drink water when everyone else is drinking wine ?

 

[JessicaGrace24]

Hi All. Had surgery and doing really, really well. In remission and eating well.

 

[JessicaGrace24]

@JessicaGrace24, what was the outcome for you? Did you end up having surgery or just staying on a special diet? Hope all is well.

I had surgery and am doing very well. No symptoms and able to eat normally again (aside from gluten and lactose).

 

[Lady Organic]

great! thats good news!

 

[Grant]

Having surgery is the last option. It is the beginning of another issues.
Refer:
https://gut.bmj.com/content/51/2/152" After ileal or ileocolonic resection there is a 20–30% symptomatic recurrence rate in the first year after surgery, with a 10% increase in each subsequent year. Most patients will eventually suffer recurrence, and a reoperation rate of 50–60% is generally reported. The need for simple and effective prophylactic therapy after bowel resection for Crohn's disease is great. "

This by Walter is exactly what I've experienced. I have another stricture now, I've managed it by low fibre diet. I'm absolutely loathe to have anymore surgery (x4 up to now). The disease just comes straight back. But & its a big but, if I start obstructing I know its almost inevitable that surgery will follow. For me balloon dilitation during colonoscopy just delays it. It always collapses back. So with careful management I've got by so far, I intend to stay that way. For me surgery has to be absolutely the last resort, my last 2 have been traumatic & I was a bit closer than I wanted to be to meeting my maker last time. I also find that with age it gets harder to get over with longer recovery times etc.
Rgds
Grant

 

[JessicaGrace24]

Just wanted to come on here and say that I just had my post-op f/u colonoscopy on Wednesday and everything looked great! I am almost 9 months post-op and no signs or scarring or narrowing at all at my anastomosis site so we will continue on with Stelara and doing fecal cal every 4 months and hope that all continues to be well. All in all, very good news. Very happy to have finally achieved endoscopic remission.

 

[Walter Jern]

This by Walter is exactly what I've experienced. I have another stricture now, I've managed it by low fibre diet. I'm absolutely loathe to have anymore surgery (x4 up to now). The disease just comes straight back. But & its a big but, if I start obstructing I know its almost inevitable that surgery will follow. For me balloon dilitation during colonoscopy just delays it. It always collapses back. So with careful management I've got by so far, I intend to stay that way. For me surgery has to be absolutely the last resort, my last 2 have been traumatic & I was a bit closer than I wanted to be to meeting my maker last time. I also find that with age it gets harder to get over with longer recovery times etc.
Rgds
Grant

Hi Grant, You will probably be interested in the following case:

A Serious Crohn’s disease Treatment Case: 2019

1. Patient Profile: Male, Middle of 40s, Address: ND, USA
2. Treatment period: 9 months from Dec. 2019
3. Main symptoms:
– Diagnosed with Crohn’s disease in 2000, had 2 surgeries to remove part of the colon and comparatively large part of the small intestine.
– Medication history: Humira, Cymzia and Remicade, but didn’t work well, On Entyvio now. Although he continued to take medications and treatments, he was feeling that his illness was continuing to deteriorate.
4. Other health issues
– Anemia
– Hypophophatemia
– Osteomalacia
– Diarrhoea 4~5 time/day
5. Treatment goal:
– When I diagnosed, many of the numbers on his blood work was out of the range and he was too weak due to long years of suffering from the disease.
If his health condition was got worse, chances of developing serious health issues were extremely high.
– The primary goal of the treatment was to restore his health condition. Due to removing part of the small intestine, his digestive system would not work properly always to absorb nutrition from the food intake. And this problem will lead to continuous nutritional imbalance problems. After achieving the primary goal of the treatment, we should focus on restoring the immune system to prevent recurrence.
5. Treatment progress:
1) He visited our clinic once for first visit, but after Canada-US border was closed due to the corona-virus, He was unable to visit our clinic anymore. So, I had to judge his progress by only email he sent about his symptoms and blood tests, and prescribe medicine accordingly.
2) In addition to Crohn’s disease symptoms, I had to solve other health issues, and his low RBC, low Hemoglobin, Low Hematocrit, Low MCHC, and other CBC issues and Kidney’s problems, High Glucose, Low Iron, and low Phosphorus.
3) Blood work on Jan, 2020 showed: Low Phosphorus number became normal. It happened after a month after starting treatment.
4) Blood work on April, 2020: Ferritin number is in normal range. Iron number became normal, RBC number became normal, Hematocrit number became normal. Hemoglobin and MCHC is still low but almost near the range.
5) Blood work on May, 2020: Glucose number is in normal range. Phosphorus number is still in normal range.
6) Blood work on Aug, 2020: Glucose number is in normal, Phosphorus number is in normal range. Sometimes his other numbers were slightly out of range.
7) Blood work on Dec, 2020: All of the abnormal numbers on his blood work is now normal except his inflammation number(CRP), which was slightly out of range.
6. Overall evaluation of 9 months treatment:
– When Crohn’s disease became worse for a long time, it develops a number of other health issues. This is why it has to be treated in early stage. Although he had been treated in the hospital, his health condition had been getting worse and developing more health issues. However, every abnormal numbers on this blood work is now normal, and his energy level and vitality restored to almost normal.
– No Anemia, No Hypophophatemia, N0 Osteomalacia NOW.

There are many other cases of Crohn's treatment including Fistula Healing. Visit Autoimmune disease alternative Treatment Community web: newhopeforautoimmune.com for more info.