Stricture and post flare up help!!!!

[JessicaGrace24]

Hi All,

As I shared yesterday, I have jejunoileitis. I have a 3-3.5 cm permanent stricture in my TI which has caused some problems with constipation and narrowing from acute and possible chronic changes in my proximal ileum and jejunum as well which led to an SBO and hospitilization in the end of May. I finished Prednisone just over a month ago and received my first Stelara infusion Aug 7 after failing both Remicade (skin reaction after a year) and Entyvio (ended up in flare after a year). I stay away from all grains, whole nuts and seeds, dairy, nightshades, red and tough meats (pork, brown meat etc). This has left me a bit limited in my protein options and even the nut butters and ground flax, hemp or chia that I usually put in my smoothies are starting to bother me a bit (constipation). When I do completely low fibre and low residue I get backed up and when I try to add in a bit of fibre it helps for a bit but then I get problems again. I've been crying every day in frustration and some support and advice would be nice. My current GI is hesitant to do surgery on my stricture due to it being so short and wanting to wait and see what my jejunum will do and how everything will respond to the Stelara. She did say there was a possibility of dilation but my old Gi told me this was not possible due to the strictures location. I'm just so frustrated with trying to manage two things these days: active and chronic inflammation. I felt so good about 3 weeks after my loading dose of stelara but after about 5-6 weeks started having problems again and am having trouble being patient while my GI trys to fight the company to get me 4 week injections instead of 8 weeks. I have to do a fecal cal first so she has information to send the company but I can't do it until 4 weeks after my next injection which is on Saturday. I am becoming discouraged that I will never reach the remission I first was having on Remicade before the skin stuff started because of the strict. Hearing your stories and advice would be much appreciated.

 

[my little penguin]

So are you using formula to make up
The calorie difference? Boost ensure or peptamen or vionex ?
Second are you using an osmotic like miralax daily to keep
Things soft and moving through your stricture ?

Ds has constant crohns constipation and has required miralax daily for years
This makes a big difference

Second formula is an easy way to get nutrients while you wait for Stelara to kick in
Stelara does take 6-8 months minimum to be effective
So you may have to wait
We had to wait 8 months to prove every 8 weeks was not enough for ds for Stelara

Until then you will probably need bridge therapy of een (formula only no solids ) or steroids
Stelara just doesn’t work as fast as remicade or humira

 

[JessicaGrace24]

I have not tried miralax but this might be worth I try. I was told by my old GI to try Metamucil but that seemed to make things worse (helped for a bit and then stopped). What kind of formula would you suggest? I've also thought about baby food. lol.

 

[JessicaGrace24]

Also Ensure and boost do not sit well with me. I have though about a vegan protein powder. Here in Canada we have an unflavoured and unsweetened one by Genuine Health that has no added gums or anything.

 

[my little penguin]

Metamucil was horrid for my kiddo
Baby food doesn’t have enough nutrition for adults at all
Peptamen is a semi elemental formula by nestle nutrition that is broken down no gums
Most Gi start there for crohns kids
With the peptamen jr version
Vionex is an elemental formula (amino acid based. )
Which is hard to drink orally but can be done by an ng tube at night if needed

https://www.nestlenutritionstore.co...nutrition/adult-specialized-gi-nutrition.html
Your Gi should have samples to try and be able to give you a script

Not sure what brands are available in Canada
But needs to be complete nutrition if you are using it as een
Orgain makes a vegan supplemental drink that my non ibd kiddo drinks
Not good as sole nutrition but

Tagging @Pilgrim and @Tesscorm

 

[Dyana]

I have a narrowing and the surgeon wants to wait also. I have had 3 surgeries already so waiting as long as possible makes sense. When something gets stuck and the pain is incredible I take a tramadol and if that doesn't help I take a 5mg oxy and ride it out. Going to the ER is useless- they just put me on a morphine drip and keep me overnight until it passes. So I take care of it at home when I can. Miralax is very helpful for moving things along. I live on tunafish and some easily digested crackers. Good luck and I hope you find relief.

 

[Pilgrim]

Mom of two kids in Canada with Crohn's and constipation. No narrowing seen to explain it, yet.

I would try the Miralax (Restoralax in Canada, or the off brand will say PEG 3350 on the front somewhere). You may have to fiddle with the dose, for instance start with half cap up to a cap. Remember it takes 3 days to work so use it daily and drink LOTS of fluids. If it's working don't skip days, just keep using it. With a known stricture I'd start at the half cap for awhile.

Formula....we just use Boost or a similar brand when needed. It's gross, but keeps weight on. We did have a problem with a lack of fibre....making constipation worse. The balance there is a struggle.

I never found another palatable brand or an organic here. But we live away from major cities.

 

[my little penguin]

Are you feeling any better today ?
What did Gi say ?

 

[Tesscorm]

My son used Tolorex formula (Nestle) when he did exclusive EN to induce remission. It is not palatable and he used an NG tube overnight to ingest the formula. He would insert at night and remove in the morning. He used the formula exclusively for 6 weeks but was allowed liquids during the day, ie broth, clear fluids (7-Up but not coke, apple juice but not orange), jello, freezies, popsicles (but no chocolate). However, he did get hungry by evening as broth or jello don't alleviate hunger.

Following the six weeks, he added back foods but stayed on the overnight formula at half dose. He eventually did need remicade but the exclusive EN did take him into clinical remission (no symptoms).

As far as cost, my insurance coverage did not cover the formula because, even though his doctor prescribed it, insurance company considered it a nutritional supplement, not a drug and it doesn't have a DIN (Drug Identification Number). In our case, CCAC (Community Care - a regional health assistance organization in Ontario) covered the cost but, with all the cutbacks over the last few years, I'm not sure if they would still cover it. (My son was treated at Sick Kids hospital in Toronto - it was the nutritionist who worked at the IBD clinic who organized the coverage with CCAC.)

Aside from inducing remission, the formula also allowed my son to regain all the weight he lost, plus more! I'm a firm believer that the nutrition that he received from the formula helped get him healthy (even if it wasn't able to completely treat the inflammation on it's own).

As this was the only formula my son used, I'm not familiar with any other brands, etc.

Hope some of this helped.

 

[JessicaGrace24]

Thanks for all the suggestions! Feeling better today but who knows how long that will last. Lol. The roller coaster of living with this disease is quite something. My Gi has suggested blended soft/pureed foods and to supplement with boost or ensure and go down to liquids if needed and symptoms continue. I think the boost clear juice might be better for me than milky ensure as I am having a ton of problems with dairy. Yes, Metamucil is horrible my little penguin! Miralax will probably be better. And yes pilgrim the balance between finding the right amount of fibre to help without ending up in pain is a battle everyday. My new specialist at least seems better than my old one (he completely missed my jejunal crohns for two years even though it had showed up on a few scans!) My problem is more severe straining daily with little output and finally an urgent biggish movement every 3rd or 4th day. I also have some accidents in my pants due to the constipation. I also have gas and bloating at night which affects my sleep. Chamomile tea, ear plugs and an eye mask at least seems to help with that. Getting enough sleep I'm finding is so important with this disease and keeping stress levels down.

 

[JessicaGrace24]

Just wanted to give an update that I ended up having another bowel obstruction due to inflammation (this time in the beginning-mid ileum rather than the jejunum) so am back on Prednisone and getting a re-loading dose of Stelara next Thursday (March 5). My injections will then be moved to every four weeks instead of every 8. I have heard so many positive stories about Stelara and the healing that can take place once on the right dose so hoping it works for me. Thanks for the support guys!

 

[Mar Wilcox]

So sorry to hear about your challenges

 

[Lam123]

I agree with others, Metamucil is terrible for my crohns.