Crohn's Disease Forum » Support Forum » Biologics or Surgery ?


04-14-2019, 04:39 PM   #1
Luciana
 
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Biologics or Surgery ?

Hello Fellow Crohnies!!!

I need some urgent advice from you guys if possible.

I am currently hospitalised, receiving 100mg Prednisone IV to give me a few days to decide what to do next.

About a month ago i ended up in the emergency room, throwing up, big cramps and bloody stools, with extended inflammation. I was put on 60mg Prednisone and a bunch of other stuff against pain and vomiting. I had MRI and Ultrasoud which showed that the inflammation was reducing. And after ten days i was sent home, when i was able to start eating again. Once at home my bowls weren't acting normal and for days nothing would come out. When it did it was very painful when it was passing through the Sigmoid Colon and i got a tiny bump on the lower left side that was very worrisome.

I ended up in the emergency room again and i just had a colonoscopy, i would like to share the results in hopes that somebody can give me some advice. Anybody gone through the same thing? It turns out i have 30cm inflammation in the sigmoid colon. with stenosis and narrowing. The rest of the inflammation in the body is gone and blood tests show this too, but the sigmoid did not respond the 60mg Prednisone.

Why they have raised the dose to a 100mg. But I am only 1,52 cm (like 5 feet) and already have slight bone loss from too much Prednisone in the past.

The doctor who is looking after me is the chief of the Gastro of my hospital and a Professor and expert in Colon cancer. But he has been very honest with me that what i have is not his expertise and i should seek out a 2nd opinion what to do next.

End of 2017 i was at another hospital, they started me on Infliximab.
it worked for few months then i developed Lupus like Syndrome.
So they switched me to Humira 40mg every 2 weeks. I have been on Humira for one year exactly. And even though i have not built antibodies to it, the doctors say Humira has not been working properly.
I wasn't bleeding or having diarrhea anymore, but i still did not feel 100% well.
And they think the Sigmoid might've remained slightly inflamed this whole time. Despite blood tests showing differently?

He says my options are:
1/ Surgery, remove 30cm of the sigmoid colon, and have a temporary Stoma, but with the high risk that the inflammation returns somewhere else. ( i have never had any kind of surgery before )
2/ Switch to another Biologic like Stelara or Entvyo. (but it takes time to work)
3/ Try Azathioprine again, which worked well for me in the past (but also takes time to work)

I am so scared right now. Do i have time? How long can i stay on prednisone?

What should i do?????

I have decided to not consume any solid food until the prednisone has reduced the inflammation. As i don't want to aggravate the wound any further. So i'm drinking bone broth soups, clear freshly made veggie soups (strained, no fiber) And take High dose Vitamin D and get Vitamin B Injections too. I'm feeling a prednisone high atm and my mind is non stop running. can't sleep. sorry for long message.

HELP!


__________________________________________

COLONOSCOPY RESULTS: (translated from german)

Written information and consent is available:

INDICATION:
M. Crohn with inflamm. Stenosis in the sigmoid

TECHNLOGY:
EC 3490 FK (3,8 mm Arbeitskanal; H 120350)

FINDINGS:
Insight until the term. Ileum, approx. 10 cm prox. the IC flap. Term ileal is macroscopically inconspicuous, as is the IC valve. The cecum is inflammatory altered. Then it shows up to about 38 cm from ano inconspicuous mucosa. From 12 to 38 cm ano is an inflammatory restriction with fibrin deposits, edema, erythema. It corresponds to the sonography finding. The passage with the endoscope is here much more difficult. In the rectum is just a single erosion. Otherwise, the rectum is macroscopically inconspicuous

PE out of term. Ileum (1), cecum (2), sigmoid constriction (3) and rectum (4).

EVALUATION:
Distinct inflammatory alteration of the cecum. Terminal ileum inconspicuous. IC flap inconspicuous. Inflammatory constriction in the sigmoid. Rectum largely inflammatory.
04-14-2019, 05:04 PM   #2
Luciana
 
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Location: Berlin, Germany
BRIEF HISTORY:

Diagnosed at 14 years old
I am 37 years old today.

Medical history:
Sulfasalazine, Mezalazine Enema, Predfoam, Predinsone, Azathioprine, Infliximab, Humira.

No surgery.

Last remission 2013-2017 (no medications in this time)

Alternative medications:
Curcuma tablets, Boswelia, Vitamin D, Vitamin B, VSL3 Probiotics, marijuana, kratom, Aloe Vera, Miso Soup, intermittent fasting, Juice fasting.

No Dairy, No Gluten, Vegetarian but i eat Fish.

Flared up again in 2017 due to a very tough period in my life that would've knocked even a healthy person down.

THANK YOU SO MUCH FOR ANY ADVICE!!
I know i am writing in a bit of a panic and i had no time to really introduce myself.
This forum is amazing and though i only post very rarely, i find a lot of comfort coming hear on a regular. Thank you all for being so brave to share your journeys!!! I only started to do this recently and have always kept it all to myself.

Much Love
Luciana
04-14-2019, 06:21 PM   #3
my little penguin
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Hugs
Stelara or entivyio can take 6 months to work
Tagging crohnsinct tacro can be used as a bridge
I can say another child on here had tried most other things and had multiple surgeries
Until Stelara
Which actually worked well for him

Een (exclusive enteral nutrition) formula only no solid food has also been used in kids to bridge or induce remission.
Some combine een / steroids /biologics and immunosuppressants
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04-14-2019, 06:32 PM   #4
Luciana
 
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little penguin!

What is "Tagging crohnsinct tacro"

Do you have to stay in the hospital while you do Exclusive Enteral Nutrition)??
Or you do it as an outpatient or at home?
And does it work for adults too? i'm 37.

I feel best when i don't eat.

Hugs back

P.S doing research now on this site about Enteral Nutrition! THank you
04-14-2019, 07:10 PM   #5
my little penguin
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Sorry tagging means I asked the member crohnsinct to respond on their experiences
(Including using tacromilius )
Exclusive enteral nutrition can be done at home
They do it woth kids
It’s tough since you don’t eat solids
But it does work in kids and adults
Adults have a harder time with no foods

Most drink formula for 6-8 weeks
But can be used longer
Ds has done it 3-4 times

You can use polymeric (ensure /boost )
Semi polymeric (peptamen /modulen )
Elemental (vionex /eo28 splash /neocate jr etc..)

Semi elemental is broken down and easier to digest than polymeric
Elemental is amino acid based so only a few inches of healthy intestine needed
But it Taste the worst
Most kids need a ng tube to use elemental
(Ds drinks Neocate jr -elemental formula by mouth no tube and has for years
He gets 59% of his calories from formula -but is not on een right now since he eats solid food )
He is also on Stelara /mtx(crohns /arthritis ) and a second biologic (different disease )
04-14-2019, 08:04 PM   #6
crohnsinct
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Hi there! Sorry you are experiencing so much trouble at the moment.

Given everything you have done with your diet thus far, it seems like you would be a good candidate for EEN in terms of your ability to handle the no food for weeks option. EEN works like a charm for both of my girls.

Did they happen to say if the stenosis was inflammation or scar tissue? If inflammation, getting the disease under control can address that. However, if it is due to scar tissue the drugs won't address that and once the scar tissue starts causing serious problems your options are usually limited to surgical interventions (balloon dilation, stricturplasty,resection etc).

Even if you were to consider surgical intervention, it is important that you move to a therapy that will be able to control disease so you don't have ongoing inflammation and experience this again.

My daughter recently became a non responder to Remicade and has dramatic colonic disease. Her GI suggested the use of Entyvio because of it's success with UC and colonic Crohn's. She has also been on prednisone a good amount over the last 18 months so while we are waiting for Entyvio to kick in (12-26 weeks) we she is using Tacrolimus as a bridge therapy. She went on it too fast and it caused horrible side effects so she backed down and slowly ramped up and so far it has done a pretty good job of stopping her disease slide and turning her around a little bit.

My nephew also has severe colonic disease and he failed Remicade and Humor and was in really poor shape. He was considering pretty massive surgery but then Entyvio was approved and he went on it and years later he has never looked back. He loves it and he looks amazing.

I know a bunch of the kids are using Stelara and having good results with that.

I forget what your signature said in terms of what you have been using but another thing that helps my daughter short term is corticosteroid suppositories and enemas as the more active disease for her is in her sigmoid colon and rectum.

I hope this helps. I would definitely seek out a second and third opinion before agreeing to surgery.
__________________
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
04-14-2019, 11:42 PM   #7
Luciana
 
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Thank you guys sooooo much for your help! And for sharing this information with me!!!

I have a lot of discipline!!
If you think this can work then i will ask for this.

Can i go EEN without formulas...but through own diet and supplements??
Like Juicing veggies (of course strained, no fiber)
What kind of tests should my local doctor run to check that i stay healthy??
What kind of supplements would i need?

Just worried about all additives in the formulas, cause i eat so healthy otherwise, but then again there is nothing crazier than prednisone.

So grateful for your knowledge 🙏❤️

Much love to the kiddies. This really is no joke!!
04-14-2019, 11:52 PM   #8
Luciana
 
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I asked if it was fibrosis, doctor said no...but also said it was so inflamed we have to wait a few days to see if the prednisone will work on this area or not.

I asked him already about balloon dilation and stricturplasty ....he said not an option.
But he said i need 2nd opinion.

Thank you for listening!!
04-15-2019, 05:34 AM   #9
my little penguin
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You need formula
No other liquid or solid -other than water for it to be een
Ds eats mostly organic except for formula
The formula is complete nutrition so your body doesn’t work hard for nutrients
Gi will have samples to try
Yes they have additives but formula works (many studies on it )
They aren’t sure why it works
Over pure liquid food (broth juice etc)
But when any other type of food is added(more than 10%) inflammation comes back and
it’s no longer een
Hope pred works and you get a second opinion
04-15-2019, 10:16 AM   #10
crohnsinct
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Well if that area is inflammation I think this is a little bit of good news because if you can find a therapy that works you can get that inflammation down and avoid the surgery.

We have a love hate relationship with formula just like we do with prednisone. Hit is so odd that formula has many of the things in it that they specifically tell us to avoid because it leads to gut inflammation yet in the formula it works. So, so weird. But like you said, better than prednisone!

If both prednisone and EEN don't work, I would ask about Tacrolimus. It does have other risks and while we don't love it, it is working for my daughter.

To prepare you for you discussion with the doc about EEN, he/she may tell you that EEN works only for Crohn's and mostly in the sale bowel. However, my daughter has almost all colonic activity and it worked like a charm for her and her friend with UC has used it many times and it also works for her. There is no harm in trying.

But you are still going to need a maintenance med so hopefully your doc has some good ideas for you there. EEN, prednisone and Tacro are all good therapies to induce remission but not good long term strategies.

Good luck and keep us posted!
04-15-2019, 06:56 PM   #11
Lady Organic
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Enteral liquid diet is great option since you mention you are disciplined. I have tried it and just like you I dont like the additives inside. But according to reaseach, it does work and help for CD. THis would be a great option along with the prednisone. If your doctor is not knowledgeable about it, ask to consult a nutrionnist at the hospital. They know about all the liquid diets.

Did you stop Azathiopurine in the past for side effects? If this medication worked well for you, I would go back on that one.
__________________
''UC-like Crohn's'' (2001)
wrists + ankles arthropathies (2013)
on: Humira
Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only, Vitamin D + B12 shots
Past meds: prednisone 50mg, 5-ASA (pill, rectal), cortifoam, cortenema, Imuran, Purinethol, methotrexate.
04-15-2019, 07:07 PM   #12
Scipio
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But he said i need 2nd opinion.
You certainly do. For disease as severe as yours you need to be treated by a GI who specializes in IBD.

I have never met her but this doctor is a prominent IBD specialist in your area:

Britta Siegmund
Medizinische Klinik für Gastroenterologie, Infektiologie, Rheumatologie
Campus Benjamin Franklin
Hindenburgdamm 30
12200 Berlin Germany


Or you may wish to check your local hospitals or medical schools to see if they have a special IBD clinic. In any case you need to be seen by someone who is up on all the latest options in IBD care.
04-16-2019, 06:49 AM   #13
Luciana
 
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Enteral liquid diet is great option since you mention you are disciplined. I have tried it and just like you I dont like the additives inside. But according to reaseach, it does work and help for CD. THis would be a great option along with the prednisone. If your doctor is not knowledgeable about it, ask to consult a nutrionnist at the hospital. They know about all the liquid diets.

Did you stop Azathiopurine in the past for side effects? If this medication worked well for you, I would go back on that one.
I stopped Azathioprine because i wanted to get pregnant and i felt really well and i remained in remission for many years after without any medication.
But i did not get pregnant, but divorced instead hahaha which triggered the last flair which i have still not fully recovered from, not even after infliximab and humira!!

Only “problem” with Azathioprine is that it takes long to work. And until then keeping me on high dose prednisone is not a good option. Why i am looking into the liquid diet!


Once i juiced fasted for a month, it took a lot of work and discipline, but i felt amazing having no stools, didnt even miss food and my energy was high! Why i believe i could do this too!!


THANK YOU SO MUCH
Very helpful to read all your words 🙏❤️
04-17-2019, 05:56 AM   #14
Luciana
 
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Well if that area is inflammation I think this is a little bit of good news because if you can find a therapy that works you can get that inflammation down and avoid the surgery.

We have a love hate relationship with formula just like we do with prednisone. Hit is so odd that formula has many of the things in it that they specifically tell us to avoid because it leads to gut inflammation yet in the formula it works. So, so weird. But like you said, better than prednisone!

If both prednisone and EEN don't work, I would ask about Tacrolimus. It does have other risks and while we don't love it, it is working for my daughter.

To prepare you for you discussion with the doc about EEN, he/she may tell you that EEN works only for Crohn's and mostly in the sale bowel. However, my daughter has almost all colonic activity and it worked like a charm for her and her friend with UC has used it many times and it also works for her. There is no harm in trying.

But you are still going to need a maintenance med so hopefully your doc has some good ideas for you there. EEN, prednisone and Tacro are all good therapies to induce remission but not good long term strategies.

Good luck and keep us posted!
THANK YOU!!!! :-)

Turns out Tacrolimus is not available as a drug in Germany?!

They did an ultrasound on me today and the inflammation is slowly going down!!! The sigmoid is still quite narrow, but it looks better than a week ago. after 100mg Prednisone i would've expected it to be gone hahaha. but patience patience!!! i know this.
Will try to eat today, after one week of just drinking clear soups, so afraid that things will get blocked...but here we go!!

After that i will go back to a liquid diet. Will try to find a way to do it without EEN, i have to do more research...and find a doctor who is willing to supervise me during this time.

Today i have to decide wether to do go for Azathioprine (imuran) or Stelara!!

This forum us helping me so much!!!!!!
04-17-2019, 07:10 AM   #15
Luciana
 
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Well if that area is inflammation I think this is a little bit of good news because if you can find a therapy that works you can get that inflammation down and avoid the surgery.

We have a love hate relationship with formula just like we do with prednisone. Hit is so odd that formula has many of the things in it that they specifically tell us to avoid because it leads to gut inflammation yet in the formula it works. So, so weird. But like you said, better than prednisone!

If both prednisone and EEN don't work, I would ask about Tacrolimus. It does have other risks and while we don't love it, it is working for my daughter.

To prepare you for you discussion with the doc about EEN, he/she may tell you that EEN works only for Crohn's and mostly in the sale bowel. However, my daughter has almost all colonic activity and it worked like a charm for her and her friend with UC has used it many times and it also works for her. There is no harm in trying.

But you are still going to need a maintenance med so hopefully your doc has some good ideas for you there. EEN, prednisone and Tacro are all good therapies to induce remission but not good long term strategies.

Good luck and keep us posted!
THANK YOU!!!! :-)

Turns out Tacrolimus is not available as a drug in Germany?!

They did an ultrasound on me today and the inflammation is slowly going down!!! The sigmoid is still quite narrow, but it looks better than a week ago. after 100mg Prednisone i would've expected it to be gone hahaha. but patience patience!!! i know this.
Will try to eat today, after one week of just drinking clear soups, so afraid that things will get blocked...but here we go!!

After that i will go back to a liquid diet. Will try to find a way to do it without EEN, i have to do more research...and find a doctor who is willing to supervise me during this time.

Today i have to decide wether to do go for Azathioprine (imuran) or Stelara!!

This forum us helping me so much!!!!!!
Yesterday, 10:06 AM   #16
Lady Organic
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Great news
Let us know how it keeps going!
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