Biologics or Surgery ?

[Luciana]

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.

 

[Luciana]

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

 

[my little penguin]

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

 

[Luciana]

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

 

[my little penguin]

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 )

 

[crohnsinct]

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.

 

[Luciana]

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!!

 

[Luciana]

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!!

 

[my little penguin]

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

 

[crohnsinct]

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!

 

[Lady Organic]

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.

 

[Scipio]

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.

 

[Luciana]

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

 

[Luciana]

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!!!!!!

 

[Luciana]

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!!!!!!

 

[Lady Organic]

Great news :ysmile:
Let us know how it keeps going!

 

[Guerrero]

Hi Luciana,

sorry for the late reply.
If the symptoms are manageable I’d try Stelara before surgery.

Modulen is a good option as meal replacement for CD. It helped me many times...

What did you decide?

 

[Luciana]

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.

Thank you so much for taking your time to recommend this!!! :heart:

I got a 2nd opinion from Britta Siegmund. My Doctor contacted her.
They advised me to go on Stelara!!

I had been to Campus Benjamin Franklin for treatment for Infliximab (2017) and later for Humira (2018) but under a different doctor than Britta.
However i recently i ended up in the emergency room at a different Hospital and i decided to stay there till i could reduce the inflammation and avoid surgery. This hospital was a lot closer to my house and they had a great specialist in internal medicine and gastroenterology who i felt very safe with.
He was also en expert in ultrasound and checked me several times to see how the inflammation was progressing, which was very reassuring. (though he can unfortunately only do this when i am actually stationed in the hospital)

Campus Benjamin Franklin had been very hard to get to when i was in an emergency, could take up to two hours...and sometimes you know u won't survive a 2 hour journey. :ywow::rof:

But luckily they consult each other

 

[Luciana]

Great news :ysmile:
Let us know how it keeps going!

Hi Luciana,

sorry for the late reply.
If the symptoms are manageable I’d try Stelara before surgery.

Modulen is a good option as meal replacement for CD. It helped me many times...

What did you decide?

Oh

I'm still quite confused if i am to be honest! :-(
Was suppose to start Stelara last week but i asked to wait for a few days.
Needed time to think after consulting other doctors too!

Thank you guys so much for listening!! It's so hard to make these decisions by yourself.

I'm still reducing Prednisone - Tomorrow i go down from 50mg to 40mg.

After failing Remicade and Humira and both of them being out of my system at the moment, i feel like this is my one chance to try to really change things around….try to do this the natural way. I've been doing a lot of research and watching so many inspirational videos in the last few days.
Right now i'm watching The Remedy https://remedy.thesacredscience.com/
Episode 3: Healing Your Immune System and The Miracle of the Microbiome

It's so interesting!!

Since the colonoscopy 2 and half weeks ago i have remained on a liquid diet.

DIET:
Fresh Green Juices, Watercress Juice, Cabbage Juice (all strained with no pulp)
Clear Bone Broth Soups
Clear Fish Broth Soups
Fresh Ginger Tea, Peppermint Tea, Oregano Tea
Chaga Tea
Miso
Linseed Water (without the flaxseeds of course)

TREATMENT:
Rick Simpson Oil Treatment (Cannabis)
Liquid diet
VSL#3 Probiotics
Curcuma
Vitamin D Drops 1000
Vitamin C Infusion
Vitamin B injection
Magnesium Baths
Iron infusion

WHAT ELSE I WILL TRY:
Cannabis Suppositories (i will make them myself, youtube tutorials)
Wormwood
Reishi Mushroom
MSM
Accupuncture
Aloe Vera

It seems like a very hard road…with a lot of work, time and costs
and the Biologics even with their crazy side effects seem to be the easier way?


Right now i don't know if i am making the right decision!!!
Or if i am just absolutely crazy?

Apart from Prednisone messing with my mind mentally and going through severe moodswings and insomnia.
I do feel quite good and optimistic. But as i continue to lower the prednisone i have to do everything in my power to not fall back to square one.

What do you guys say?!!

Go on Stelara, Go on Azathioprine. Go on nothing…. and try do overcome this!!

Infinite Thanks & Hugs
Luciana

 

[Guerrero]

Very risky to quit standard medication and switch to all the ‘alternative’ treatments you mentioned while you risk surgery, but it’s your call of course.
Most of the treatments you mentioned have either no proof they work to ease CD’s inflammation or proofs they do not work.... otherwise IBDs would have been eradicated long time ago...
Could be a good idea however to prove natural medicine in addition to standard medicine.

 

[my little penguin]

Please stay with standard meds
Your options were surgery or stelara
Alternatives can be good as supplemental medicine for some who are in solid remission
Not for those on the verge of needed bowel removed
Please talk to your doctors over your concerns
Ds has been in stelara almost two years in August and
is doing well

 

[Jo-mom]

I agree with my little penguin. You should consider the Stelara and you can also take some of the alternative medicine/diet you mentioned as well. I wouldn't take any chances.

 

[crohnsinct]

I am a huge proponent of natural remedies and firmly believe in vegan diet to help prevent or reverse most chronic illnesses. Further, I have been learning a lot about the micro biome and it's relationship to IBD etc. That said, in all I have read and all the functional Md's that I have taken my daughter to, everything points to traditional Pharma therapy for IBD. We certainly use a lot of that stuff to help my daughter along but she has been on her fair share of biologic and steroid therapy the past 7 1/2 years and she is still flaring. You were on a biologic and still found yourself in this place. If the biologic wasn't good enough to get you to remission, I would doubt that diet and supplements alone would get you there. Also, diet and supplements etc take a LONG time to work. To rebalance the micro biome it could take up to 5 years and to do so you have to work with a functional specialist and eating fermented foods, extremely high fiber etc.. I don't think at this point you have the luxury of time. I would grab the Stelara and also work the natural and diet route and hopefully down the road you can someday reduce the Stelara or try coming off it. But for now, and with the medical evidence we have, Stelara seems your safest bet to getting to a good solid remission. Good Luck!

 

[Lady Organic]

I have tried almost all possible natural remedies and failed all of them, including expensive ones such as VSL-3 and cannabis CBD oil and I eat a very strict organic diet (no gluten, sugar and milk, etc) since 7 years. I know it does help some people, but what proportion of patient? We have no idea. I got to a point this year where I decided I had to start a first biologic (Humira) or otherwise there would be a high risk things would just start going really downhill for me. It was a heartbreak, but I felt i had no choice and had to be realistic. So far, Humira is doing really great and I am very happy. I understood and agreed with myself that I would never come off strong medication in my future; risks of sad evolution of damages and complication related to disease and prednisone are too high. Since you ask our opinion, I think with your situation; hospitalized, cortico-dependant and needing high doses of prednisone, talks about surgeries... you got to go with a pharma treatment. You were once on Aza and were doing well. This is the treatment I would take again if I were in your situation, with no hesitation. Stelara is a good choice too, but there is no certainty you will positively respond and avoid side effect. If you dont have a positive response, you risk returning to square one. For all these reasons, I think Aza is your safest bet.

 

[ncman]

Luciana, I disagree with some of the others here, as it is possible to control the course of the disease using diet as main therapy - but it has to be done the right way.

Did you ever go on the formula elemental diet? As I fear that in the 'liquid' diet you've posted above, there is too much extra in there to truly crush the inflammation. For example, bone broths do not suit me - I react to the gelatin or some other ingredient in the broth - so even though it's clear, it brings me out in mouth ulcers - a sure fire sign that things are not right. These stop when I stop eating the broth - hence I leave it out of my diet.

You would a) need to stop the inflammatory cycle using an elemental diet - this is NOT juicing - to b) then do an elimination diet to see which foodstuffs you are reacting to.

Please check the link in my signature, it's a great guide to this, and also look at the Lofflex diet. Jini Patel Thompson is another good guide to the elemental diet, although I wouldn't accept everything she says as gospel.

It's also hugely important to keep things monitored to make sure the inflammation is reducing.

 

[Luciana]

I really appreciate all the feedback you guys have given me!! :kiss:

Unfortunately i'm not in a good state mentally.
The prednisone is really messing with my mind and it has been very hard for me to make decisions lately. I went from high energy manic to completely deflated and depressed. Fatigue and insomnia at the same time.
i'm behaving very strangely. And feeling like a burden to everybody.

I'm on 30mg Prednisone right now. So far so good.
(still on liquid diet…not elemental, but no bone broth anymore. but i make fish broth)

Just had an ultrasound, the inflammation is definitely much much better!!
But of course it's not gone yet. And i need a back up plan for sure!!

Suppose to start Stelara in 5 days. (Doctors like Stelara more than Imuran they said)
Seems like the best thing to do.
I know i has worked for so many and given them their life back!

I been so lucky to have people who want to help me out holistically and they believe i can do it without medication!!! Even my house doctor (not a gastro, but still very knowledgeable) And an amazing dietician and alternative doctor too. but it's so hard, i feel like a disappointment now….cause i am scared.
And it makes me want to shut everybody out and give up.


Crazy feeling
:ywow: