A confused mom

[aruna]

My son (12 yr old) just diagnosed with crohn's has NO classic symptoms such as Abdominal pain,Diarrhea,loss of appetite,weight loss,Blood in stools etc..
He is having perianal fistula with colonoscopy showing ulcers in ileocaecal and pyloro-duodenum.
Did anyone have such presentation?
Our doctors want to start with biologics?
I'm worried about the side effects of biologics.
Has anyone tried Ayurvedic medicine?

 

[Pangolin]

Symptoms can be vague, even with severe Crohn's. My son did have some diarrhea, abdominal pain, and low appetite, but they were not so extreme that severe disease was obvious.

Later on, after starting treatment, symptoms were nearly gone yet serious inflammation continued, which made the situation confusing for some time. Various kinds of testing can help clarify exactly what's going on.

I understand being wary of biologics, especially when symptoms aren't particularly bad. However, this can be a very difficult disease to get under control. Some biologics have more side effects than others, but many patients experience no side effects at all. My son has essentially zero side effects so far on Stelara.

 

[aruna]

Symptoms can be vague, even with severe Crohn's. My son did have some diarrhea, abdominal pain, and low appetite, but they were not so extreme that severe disease was obvious.

Later on, after starting treatment, symptoms were nearly gone yet serious inflammation continued, which made the situation confusing for some time. Various kinds of testing can help clarify exactly what's going on.

I understand being wary of biologics, especially when symptoms aren't particularly bad. However, this can be a very difficult disease to get under control. Some biologics have more side effects than others, but many patients experience no side effects at all. My son has essentially zero side effects so far on Stelara.

There are many patients opting out of steroids/biologics due to potential side effects after long term use and trying to find solutions with diet only.
Do you think I can risk alternative therapies?

 

[Scipio]

I was wary of biologics too, especially since my symptoms were mild. I avoided them for about 5 years after diagnosis, opting for only occasional short courses of budesonide. But my mild disease suddenly turned nasty and I ended up on the operating table with my chest cut open to remove my pericardium that had become inflamed as an extra-intestinal manifestation of the Crohn's and induced a case of heart failure. I was put on Stelara after that, it it has kept me in remission ever since.

So I understand the wariness of the scary-sounding side effects on the labels of the biologics, but I now have a long scar down the middle of my chest as a constant reminder that even "mild" Crohn's can turn aggressive very quickly and do lasting damage. And BTW, if your son already has developed a fistula then by definition his Crohn's is no longer mild. A fistula is a sign of aggressive disease.

 

[Pangolin]

Can you risk trying some alternatives before you go to the more serious drugs? Personally, I think you can and should, but you shouldn't let things go too long if you're not succeeding at getting rid of the inflammation. EEN is your best bet for dietary therapy, and if you just want to buy some time while you figure things out it's a great option.

 

[aruna]

I was wary of biologics too, especially since my symptoms were mild. I avoided them for about 5 years after diagnosis, opting for only occasional short courses of budesonide. But my mild disease suddenly turned nasty and I ended up on the operating table with my chest cut open to remove my pericardium that had become inflamed as an extra-intestinal manifestation of the Crohn's and induced a case of heart failure. I was put on Stelara after that, it it has kept me in remission ever since.

So I understand the wariness of the scary-sounding side effects on the labels of the biologics, but I now have a long scar down the middle of my chest as a constant reminder that even "mild" Crohn's can turn aggressive very quickly and do lasting damage. And BTW, if your son already has developed a fistula then by definition his Crohn's is no longer mild. A fistula is a sign of aggressive disease.

Thank you for sharing your experience.
It's an eye opener.

 

[crohnsinct]

With IBD steroids are no longer used for long term management of disease. We now have many more and safer long term options such as the biologics. Steroids are now just used to get inflammation under control while waiting for the biologics to “kick in” or for a very severe flare. Some people with mild disease don’t even have to take a steroid and can just start on maintenance meds.

I know we all like to think our kids have mild disease but being diagnosed at 12 already puts your son in the moderate to severe category and having a perisnal fistula puts him further into the severe category.

I am a huge fan of EEN and have used it many times (instead of steroids) with both my daughters with some success but they both also needed biologics. EEN works while you are on it but once you reintroduce food the inflammation comes back. Therefore, you need a maintenance plan. There are some people (very few) who are able to manage their disease cycling on and off EEN and when off being on a special diet such as SCD or CDED but the risk you take with that is the cycling can cause a cycle of inflame/heal which increases the risk of scar tissue and strictures. Further the more you experience inflammation the higher your risk of Colo rectal cancer down the road. Lastly, diet interventions are not usually as effective with peri anal disease.

 

[WindingRs]

My son also just like yours had no symptoms of Crohns, and only had a non healing fistula. After a year of testing and retesting (with every result coming out normal), we reluctantly started Remicade hoping to stop the drainage. We got second, third and fourth opinions and every doctor told us we should not let Crohns shows us its ugly head. After a year and half of treatment with Remicade now we are seeing high calprotectin results. More scopes being planned. Over the past few years I’ve learned uncertainty is part of our journey. Im sorry you are going through this.

 

[Maya142]

We delayed treatment for my younger daughter. She was diagnosed with Juvenile Idiopathic Arthritis (and later diagnosed with Crohn’s) a few days after turning 12. Her older sister had already been diagnosed and we had already agonized about biologics and delayed starting them, and finally when we did, we got our happy teenager back. But my younger daughter’s arthritis did not seem as severe, so we tried alternative therapies - seeing an integrative medicine doctor, trying gluten free, treating her for Lyme disease which the integrative medicine doctor insisted she had (she did not) and all that time, inflammation in her joints was causing permanent joint damage and her arthritis was spreading to other joints. She was so miserable, in so much pain, missing school (very unlike her, she loved school) and stopped sleeping through the night. She also developed pretty aggressive and hard to control arthritis, and several rheumatologists have told us that’s because she was not treated early enough or aggressively enough and she’s never even been close to remission. And permanent damage has meant permanent pain and lots of surgeries - including joint replacements in her early 20s. There is nothing I regret more than not treating her appropriately EARLY because she has been through SO much (15+ hospitalizations and 10+ surgeries) because we were afraid of biologics (even though we already had one kid on them doing well!!).

So when she was diagnosed with Crohn’s at 16, we did the opposite. We made sure she was treated aggressively early. She struggled with being malnourished and severely underweight, but regained weight with supplementing enteral nutrition. But besides that, her Crohn’s has been in the mild to moderate range, she’s had absolutely no serious complications like strictures or fistulae and her Crohn’s is currently in remission on Remicade and MTX. Her Crohn’s was not as bad as your son’s at diagnosis - she had ulcers in the last third of her colon and inflammation in every part of her colon and terminal ileum (which was friable - bled when biopsied) but no fistulae, and her GI still wanted to get the disease under control ASAP. Her symptoms were also not typical - she had abdominal pain and weight loss and some constipation. We honestly thought we’d be ruling out Crohn’s but biopsies confirmed it. We did not want to risk her Crohn’s becoming more complicated, so we followed her GI’s advice and put her on Remicade back then, MTX and Entocort and I’m so glad we did. It took several infusions before she really felt good but the Entocort helped in the interim (she found EEN too hard at 16, though she did it later as a young adult).

Your son’s Crohn’s is already in the severe category if he has a fistula. I would honestly follow the advice of your doctor. The only diet treatment that has extensive research behind it is EEN, which is 100% formula and no food and while it can be done, it is hard on kids. It’s typically done for 6-8 weeks, only to induce remission and to give a maintenance medication like Remicade or Humira time to kick in.

 

[Maya142]

I also want to add - in the almost 10 years I have been on this forum, I have learned that there is no “typical” Crohn’s diagnosis and Crohn’s symptoms. Some kids have no symptoms at all except they stop growing or gaining weight. Others have the classic bloody diarrhea. Others have constipation and joint pain. It really and truly varies. In the past, before biologics existed, most kids required surgery within 5 years of being diagnosed. Many of them also required chronic steroids and all the awful side effects that come with long-term use (adrenal insufficiency, osteoporosis, significant weight gain and Cushing’s syndrome etc). Now, that doesn’t happen as often because we are lucky enough to have these meds.
Additionally, you mentioned your son has mostly small bowel disease - in the duodenum and terminal ileum. That is less likely to cause bloody diarrhea that disease that affects the colon. Also, you might be surprised when you start treating him. I had thought my daughter had very minimal Crohn’s symptoms compared to some, but once she was on the right medications, she just looked so much better and once she gained weight and started absorbing nutrients, the difference was like night and day - she had so much more energy and could do so much more.
Please be careful with treatments like supplements and Ayurvedic medicine - there is no research to suggest they can help. We tried homeopathy for quite a while and it did absolutely nothing and the supplements we tried, turmeric with black pepper actually caused gastritis, and fish oil caused a lot of bruising. Curcumin is probably a better option than turmeric if you want to try supplements. But they should be in addition to medications, not in place of.

 

[aruna]

Thank you for sharing all your experiences.
I really hope there will be a cure in the near future.