Son Has Crohns

[Hershey123]

My 26 year old son was diagnosed with crohns about a year and half ago. He had an abscess the size of a baseball, they drained it and then it returned and now has a drain, he had three drains this year. and the fistula cannot be addressed until the inflammation is reduced. We tried Humira Remicade, and now he is going to start Stelara.

It is breaking my heart that they cannot get the inflammation down to address the fistula. Does any Dr still use steroids, his dr. says they don't like to use them....

What else has anyone tried to reduce the inflammation so they can operate and fix the fistula...... I am very sad for him and don't know what else to do.

I even took him to one of the best surgeons in New york that did not accept insurance to see if we were getting the correct treatment for him to see what else we can do. He said we are doing everything we can at this time.

Anyone have any feedback where the meds did not work and you kept trying?
I am looking for a miracle to give him back his life...... there has to be something.

 

[ronroush7]

Welcome. I had an abscess that they drained. They only kept me in the hospital overnight. A week and a half later, the abscess returned. They had to drain it again. This time, they had to do antibiotics by iv and kept me for a week. That knocked it out. You also might want to post this on a sectional n here called Parents of kids with ibd. I am going to tag Maya 142, my little penguin.

 

[eleanor_rigby]

My 26 year old son was diagnosed with crohns about a year and half ago. He had an abscess the size of a baseball, they drained it and then it returned and now has a drain, he had three drains this year. and the fistula cannot be addressed until the inflammation is reduced. We tried Humira Remicade, and now he is going to start Stelara.

It is breaking my heart that they cannot get the inflammation down to address the fistula. Does any Dr still use steroids, his dr. says they don't like to use them....

What else has anyone tried to reduce the inflammation so they can operate and fix the fistula...... I am very sad for him and don't know what else to do.

I even took him to one of the best surgeons in New york that did not accept insurance to see if we were getting the correct treatment for him to see what else we can do. He said we are doing everything we can at this time.

Anyone have any feedback where the meds did not work and you kept trying?
I am looking for a miracle to give him back his life...... there has to be something.

Hello, sorry to hear of your difficulties. Yes steroids are widely used for Crohn’s, I think you would struggle to find many patients here who have never been on steroids at some point. However, it’s not good to use them a lot and not good to use them long-term. They are usually used for a period of a few weeks to bring the inflammation down while the long-term maintenance medication is started, to give that some time to get going and hopefully work. Some options you could consider:

- Budesonide - has many fewer side-effects as it is a gut specific steroid

- EEN (a special medical liquid diet) to give the bowels a rest. Has been shown as effective as steroids in children. I think it is being trialed in adults.

- This treatment is currently in trials for fistulas and seems promising: http://m.nasdaq.com/article/tigenix...iii-results-of-cx601-shares-up-20171005-00106
And
https://ibdnewstoday.com/2017/09/27...herapy-crohns-fistulas-review-study-suggests/

 

[Lady Organic]

Hi and welcome.

Steroids are part of our lives. No one likes to use it, but sometimes when we hit the bottom, we dont have choice. I have used rounds of steroids many times in 16 years of CD already (maybe 7x) and for a GI to say they dont want to suggest it is beyond my comprehension. Nobody likes to use steroids, but sometimes when the quality of life is very difficult, this option feels like and is a life saver. A year and a half of chronic disease, difficult symptoms and unsuccessful treatments are hard not only on the body but psychologically as well, very much. I am hoping your son finds relief soon.

Budesonide is for terminal ileum and small intestine.
For colonic disease, Prednisone will be used.
Steroid therapy lasts a few weeks to a few months depending on severity of disease activity.
I have heard from experiences (not fistula though) that surgery should not be performed right after a round of steroids. I dont know how long the wait should be or what amount of prednisone would be unsafe before a surgery. So I would ask that question to the surgeon to be sure with that if your son goes for this option.

Enteral liquid diet is definately worth trying if you son is motivated enough to stick to this only source of foods for weeks or months until a maintenance therapy like Stelara kicks in. Enteral liquid diets work for a good proportion of adult patients too and are used often in many different countries outside of America in the adult population.

 

[DustyKat]

Hi Hershey123 and welcome.

Just a question first up, where is your son's Crohn's and fistula located?

 

[JPEssentialOils]

My 26 year old son was diagnosed with crohns about a year and half ago. He had an abscess the size of a baseball, they drained it and then it returned and now has a drain, he had three drains this year. and the fistula cannot be addressed until the inflammation is reduced. We tried Humira Remicade, and now he is going to start Stelara.

It is breaking my heart that they cannot get the inflammation down to address the fistula. Does any Dr still use steroids, his dr. says they don't like to use them....

What else has anyone tried to reduce the inflammation so they can operate and fix the fistula...... I am very sad for him and don't know what else to do.

I even took him to one of the best surgeons in New york that did not accept insurance to see if we were getting the correct treatment for him to see what else we can do. He said we are doing everything we can at this time.

Anyone have any feedback where the meds did not work and you kept trying?
I am looking for a miracle to give him back his life...... there has to be something.

I would love to the chance to talk with you. I was diagnosed with crohns at the age of 15 and fought it for 30 years having surgery to remove some bowel about 15 years ago. Then in 2014 a friend introduced me to essential oils. I was very reluctant at first because it sounded like BS, but what do any of us with crohns have to loose! Within a month my symptoms were going away and now I've been symptom free for 3 years, truly amazing. What is sad is that I WAS a patient at a very large clinic that even had a research dept that I participated in multiple times. When I approached them about the oils they had no interest. That was very disappointing knowing how it had helped me and now I know of many others as well who have been helped using the oils. Essential Oils (good ones), are very powerful and give the body what it needs to heal and care for itself. If you would like to know what I do( the oils I take) just reach out to me and hopefully we can help your son get better.

 

[Magnolia24]

I have been on steroids in the past, but my doctor wanted to avoid them to treat my most recent flare because we are discussing starting a biologic, and apparently steroids can decrease the effectiveness of those drugs. However, she was willing to prescribe it if my symptoms worsened, and plenty of people start a biologic while on a steroid..but perhaps this was the doctor's reasoning? I would ask for a more thorough explanation.
I have been able to avoid steroids this time and got my flare symptoms pretty well under control with diet (basically intro diet SCD). Would he consider dietary changes or even EEN? SCD is less predictable in its effect on inflammation, but certainly helps many symptom-wise. EEN is supposed to be as good as steroids.