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.
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Stricture Advice- Surgery or not?
- Thread starter JessicaGrace24
- Start date
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?
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.
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.
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!
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.
@my little penguin @emmaaaargh @Guerrero @crohnsinct @Scipio any thoughts? Do you know who on here has dealt with SIBO or done low carb diet?