What can he try?

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xmdmom

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Jun 21, 2012
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My son is having a flare that was triggered by stress that is ongoing. He's been on budesonide and ldn for 1 year. He has had a 7lb wt loss that has stabilized with boost drinks, and fatigue, stomachaches and now diarrhea. He was on 10 mg prednisone along with other meds in early July and that helped but now that he's on 5 mg, he has symptoms again. He doesn't want to try aza/6mp/mtx or biologics. Does he have any other choice? His disease was in the ileum at diagnosis 1 year ago and a MRE showed some narrowing of the intestine for a short distance.
 
I understand not wanting to try some of the heavier meds. But, under treated crohn's is a much scarier situation in my opinion. My son has been on 6mp for 2 years now and is in complete remission. He feels great and has no side effects from the 6mp.

I would urge him to try one of the heavier drugs. He can always stop taking it if he decides he doesn't like it. Honestly, it is much safer for him than being on Prednisone.

If he would like to talk to my son and ask any questions, he would be happy to talk to him about 6mp. My son is 13 years old, was 11 at diagnosis.

(((((hugs))))) I know these decisions are never easy.
 
He's afraid of the HSTCL lymphoma that seemed to have a higher incidence in his demographic. Yes I know the incidence is very low but it is still there and scary. He may need to try one of these drugs but he currently he really doesn't want to. He will see the doctor next week. And he keeps thinking if the stress goes away maybe he'd be fine on his current drugs (w/o prednisone).

Could an elemental or semi-elemental formula work for him at this point? And which one is most palatable? I was thinking if this is a possibility, he might want to try it and if he can't stomach it or it doesn't work, move up with new meds.

BTW, he turned 20, hope it's ok I'm posting on this part of the forum...
 
You are a parent and he has Crohns...I would say you definitely belong posting here! Adult section may have more advice too.

For starters, if he really feels the stress brought on the flare maybe finding a way to deal with the stress...yoga..meditation..running ...painting etc.

I know you are well aware of the argument for stepping up the drugs and that damage to the colon is a much more likely occurance than the Leukemia you speak of but it is his body and at his age I guess he gets to make the call. If this is just a set back flare, I would imagine that a course of EEN might help as it is just as successful at achieving remission as prednisone. I am not sure of it's success rate in adults but it is worth a try I guess. My daughter did Boost and Ensure and it worked great but most of her disease was in her colon and she was also on Remicade at the same time.

I am sure MLP will be along shortly with the list of formulas and the pro's and cons. Our doc likes to start with most palatable and if the body doesn't tolerate it work his way down the chain.

Good Luck!
 
It is fine that you are posting in this part of the forum!!! Our babies are our babies no matter the age.

Was he on both prednisone and entocort? I didn't know that it was recommended to be on entocort for that long a period of time. Has he had any imaging or testing to see if his initial damage has improved any? I think that would be a priority since he hasn't found lasting relief in the last year.

He could try EEN then move to SCD, Paleo or one of the other diets that are listed in the diet forum. You could add turmeric as it is an anti-inflammatory. Not sure what else to suggest, you may want to ask in the Diet forum as they may have more knowledge about things other than traditional meds.

I do hope he finds relief soon.
 
He was in clinical remission from Aug 2012 until January. His weight went up to 142 in March but now is 135 on Boost (5'11 but always thin). His MRE was in January and looked good except the narrowing. An adult GI at Cleveland Clinic put him on budesonide and said he could stay on it as long as it works and he has had some people on it for years. His blood work had been pretty good exc mild anemia and borderline albumin.

Thanks for reminding me about tufmeric. Can you or anyone tell me the specifics about how to take tufmeric (ground, pill, capsule, brand, amount, frequency)? That info would be greatly appreciated.

Oh and yes he's on vit d and his level was 60 and climbing.
 
EEN worked so well for Stephen I certainly won't discourage him from trying it! I have read that it may be more successful when used for the first time but not sure how reliable that info was. And, regardless, if his crohn's is usually under control and it's the stress causing this flare, EEN may be enough to bring it under control.

Helminth (worm) therapy is something else I've seen around but I have no knowledge of it, how successful, how available, etc.

How about diets? SCD, Paleo, juicing... some seem to have success with this???

Does he take any anti-inflammtory supplements? I don't think they'll be enough to rid him of a flare but may help control things??? Stephen has Krill Oil every day.

It's also possible he needs a slower taper off the pred. Maybe doing EEN and then trying to taper again at a slower pace??

And, absolutely you belong here!!! :ghug: Ugghh, because if you don't, then that means I don't either! :yfaint: Lots of older teens and 20s here (me, Dusty, Crohn's mom, Catherine, Clash, Livilou, etc.)..
 
I have a great link that explains the risks of lymphoma, it made me feel a lot better about our decision.

http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

I thought of it this way, most lymphoma cases occur after 2 years or more of 6mp use. If by that time he isn't feeling good about taking it he can stop and hopefully meanwhile there are some new meds out there, and his gut is intact. That was just how we thought about the situation.

I completely respect his decision. The truth is there are no easy choices. And I plan to stay on the parents forum until my son is 40!:D
 
Thanks Tess.

He doesn't take any anti-inflammatory supplements. Can you give me more info about how the krill oil is taken?

He has kale/carrot/apple juice once a day but right now I think it's bothering him.

He mentioned worms yesterday but I recall they are very expensive if you do the pig whipworms and not sure about the others.

Re:EEN, I'm almost positive that he woudn't due a ng tube so I'd be interested in knowing about what formula's are good that are palatable.
 
The Krill oil is just a capsule. I buy the Neptunebrand.
http://www.betterhealthinternationa...N1627&zmac=13&zmam=63813010&zmas=1&zmap=N1627

It comes in 500 and 1000 mg. I started him on it once he finished the six weeks of EEN. At the beginning, he found taking 1000mg at once gave him softer stools, so I had him take 500 in the morning and again at night - this worked (and, now, he just takes the 1000 at one time and it's all fine).

Re the different formulas... I think Peptamin and Elemental 028??? are semi-elemental and 'palatable' but, yes, MLP has better info.

happy has had success with an elimination diet. I believe she posted lots of info in her thread in the (adult) success story subforum. But, I believe it was a long process... not sure how feasible it would be for a university student??
 
I probably wudnt chance it. I imagine krill and shrimp are of the same family. Can he eat other fish? Ie other fish oils... If u hv concerns abt mercury, I think Dusty's daughter uses flaxseed oil as an anti-inflammatory supplement.
 
Peptamen is the most palatable since it is semi-elemental
EEN doesn't work as effectively as pred in adults. At least in all the studies I have seen.
The most palatable amino acid based( pure elemental) would be eo28 splash.
Both are expensive though.

If htcl is his main concern - this not a risk if he were to start biologics.
The htcl risk only comes into play when a child has been on an immunosuppressant and then a biologic even if there is a break by years in between.

They have also found the risk is the same for males or females young or old
The first few cases however were young males.

Has he tried probiotics ?
Not sure that would help much at all though since they help more in the rectum .

I wish there were better answers and drugs
But have you explained to him how deadly under treated crohn's can be ?
Shown him the slides of what colons look like when they are removed where they were let to run their own course.

I had to look at these and many other things to make peace with giving the evil drugs.

Wishing you and him the best .
 
Matt's GI has just recommended that he start taking Turmeric for its anti inflammatory properties.

I had already been thinking about it for some time due to the information I had read on the forum. I have purchased a product that also contains black pepper as it is supposed to increase the bioavailability of the Turmeric quite significantly.

Good luck!

Dusty. xxx
 
The black pepper part sounds counterintuitive since he avoids this in his diet because it is is makes symptoms worse.
 
Turmeric or Curcumin can irritate the digestive tract which is one unfortunate property. You need to watch for this when supplementing. Curcumin is too much for my guts. Had to stop using it.

Dan
 
The problem with curcumin is for true anti inflammatory help you would need a very large dose. Studies are looking at upwards of 1200mg. I'd be concerned putting so much in the body not knowing the consequences. I did it for a while but stopped after increased diarrhea.
 
xmdmom- has your son read this?

http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

I don't know if the link worked but it's the transcript of a conversation with a Dr. Siegel (who is Director of the IBD center at the Dartmouth Medical Center) about the risks and benefits of meds like 6MP, Humira, Remicade, Methotrexate etc. The other day I was worrying about the risk of cancer since my daughter is on MTX + Remicade and then I found it and it made me feel a lot better. It's from the CCFA website so if the link doesn't work you could just search for it there.
 
I think it was MLP who posted some other statistics on another thread ,but I could be wrong, but they were like everyday things we do- one example was getting into a car crash...odds much higher than the lymphoma thing...and we do that many times a day. The above link that Maya142 posted is a good read. We all TOTALLY understand your fears
 
It's not only the lymphoma, though that is a big part of it. I really don't want to get into the risk benefit stuff. I appreciate the document Maya142 posted. I'm really looking for other options. Thank you.
 
I can understand his concern about the side effects of these drugs but he also needs to think about the consequences of not taking drugs and letting the illness go wild. I say this from experience I hated and avoided drugs till I was so bad that I begged the doctors to put me on any drug they want and that I needed help now.
 
You probably know that I am a physician by training so I know about drugs, the good and the bad and the ugly, and I don't think it's an easy decision to go on immunosuppressants or biologics when your symptoms are mild. Unfortunately some people have mild courses, some severe and some in between and no one is very good at prognosticating until severe issues have happened.
 
Xmdmom
If there were other options with less risks - the rest of us would be trying them.
The reality is there are not .
I know you don't want to get into risks but you asked for options.
The known drugs that have been proven to help with Ibd have those risks and you stated your child does not want to take those ( I assume you don't want him on them either).

So if he is not willing to try immunosuppressants or biologics
Then that leaves steriods or ldn which he is on.
If entocort is no longer working discuss oral pred .

Pull the papers - read them
When there was only pred available the damage done and quality of life with this disease was very bleak.
Gi 's know what happens if you only use those to treat .

Have you flown on a plane ? Driven in a car? Went swimming?
Eaten at a restaurant ?
Anyone who works daily in any of these areas may be less inclined to take the risks that most of us blindly take everyday
since they know the " what could go wrong.. If stuff"

My kid has many things including life threatening food allergies so the
" it may kill" fear can be a daily thing if I let it. And yes I have had to . him for anaphylaxis once for something I gave him that should have been safe .

But life goes on and outside of bubble wrap I try to give the best quality of life for him with the best set of meds availAble at the time.

I am wondering if his Gi has reccomended biologics or immunosuppressants ?
What plan does the doc want him to take and why?
Has he asked for BRAND for each?
Benefit?
Risks?
Alternatives?
Nothing ?
Decision?

Is there something else he has recommended?
When was his last scope or imaging ?
What about the newer stuff ( stelara)?

I understand where you are coming from - when dx I was determined DS would only do EEN until he was eighteen then we would maybe try pentasa.
This disease had a different plan.

So long story - as you already know only options are what he is currently on
And maybe switching entocort for pred.
 
It really is such a very tough decision, undoubtedly the toughest I've ever faced. Since EEN put Stephen into clinical remission, he's had very, very few outward symptoms. Stephen's ped GI was fine with keeping him only on EN as maintenance. While MREs continued to show some inflammation and a couple of times mentioned that at some point mtx might have to be considered, he never reached the point that he suggested we add it. I don't know if he was right or wrong? I questioned his acceptance of the inflammation but was happy to not add meds. :ywow: Of course, I would not have been so 'happy' if complications had arisen due to the ongoing inflammation!

Upon transfer to adult GI, new GI was adamant that remi was needed to eliminate the inflammation immediately as it could very likely lead to eventual surgery. On one hand, I was happy that he was taking such a proactive approach but on the other hand had very serious concerns that he was 'brushing all with the same stroke', and not taking into account that S had no symptoms and had been stable for so long on only EN. I'm certainly not convinced his GI considered all options before jumping to the biologics, specifically LDN, but completely understand his reasons for his recommendation.

Given Stephen's age, I had to accept his decision (to add remi) even knowing that, at 18, he was probably not thinking it all out as I had done (no one can think it 'all out' as much as a scared and worried mom! :eek:). Not at all saying Stephen's decision was wrong, just that Stephen, to a degree, was blindly following what the GI had recommended rather than considering ALL issues (lifestyle/repeated infusions, etc. not just cancer risk). I could probably have convinced him not to start remi but, if he ended up requiring surgery or feeling as NGNG does, it would have been my fault. All I could do was give him all the info I had and an opinion as unbiased as I could give. And then support him 100% in his decision and truly believe he had made the best decision he could with the options given him (which is what we all do, regardless of what med we choose or not choose).

xmdmom - there are many on here who feel as NGNG and have, unfortunately, found, in hindsight, that they could/should have done something differently. I am so grateful that they share their experience to help guide others and very much take their experiences into account! BUT, there are probably just as many, if not more, who are not on this forum, who have chosen lesser drugs and are doing absolutely fine. Once in a while, you find a new member who comes on and says 'oh, I was fine for 25 years and just got a bad flare...' If you can make 25 years with no or little meds and then have a flare, I think you've done okay! Problem is, none of us have that crystal ball. Whatever your son's decision is, I don't think it's a wrong one (as a doctor, I'm sure you will be aware when things are truly out of control). He is making the best decision for him that he can under the circumstances. :ghug: :ghug:
 
^^^ yeah that
Most on here are not mild
The forum is a self selecting group and the ones that need the forum generally
Do not fall into that category.
The just take pentasa or eat a few extra veggies etc get on with life and tend not to stick around.

The best path is the one that works for your child
And keeps him in remission .

Hope he finds that soon with the help of his Gi .
 
xmdmom, I think MLP is referring to studies that have been published since the addition of the label warning. Here is a link to one of them, I think there are a few more but can't put my hands on them at the moment:

http://journals.lww.com/eurojgh/Abstract/2011/12000/Hepatosplenic_T_cell_lymphoma_in_patients.9.aspx

It isn't the full article, unless you are a member but does state as the conclusion:

Conclusion: HSTCL is no longer restricted to the previously identified risk group of young male patients, but can also occur in patients with rheumatoid arthritis, females and older adults receiving TNF-α inhibitors and immunomodulators. Improved disease outcomes using combination therapy should be tempered by the risk of developing HSTCL.
Click to expand...
 
Our ped GI told us the increased risk of the lymphoma exists as described by MLP, in that your risk is greater when using a biologic if you have ever used an immunosuppressant in the past, even if taken years before.

This is partly why I wasn't at all anxious to start on an immunosuppressant now instead of remi; my assumption was that we would eventually move to a biologic anyway and then have that increased risk. I'm not sure what the risk is if the meds are used in reverse... ie biologic and then immunosuppressant (ie if the biologic stops working) - I've never seen this discussed anywhere. Given the nature of these meds, I doubt there really is much of a difference regardless of which you use first but, perhaps, there isn't an increased risk if used in reverse??? There may be no real scientific basis for this logic but... ^^shrug^^ :)
 
D Bergy said:
Turmeric or Curcumin can irritate the digestive tract which is one unfortunate property. You need to watch for this when supplementing. Curcumin is too much for my guts. Had to stop using it.

Dan
Click to expand...

That's interesting D Bergy,
Grace was on this for many months and I stopped it and she seems a better, less cramping and gas. She also couldn't do Aloe Vera juice.

Are their any studies showing it to be an irritant for the GI track?
 
My son will get labs done and see the gi later this week. His GI doc will give his opinion but the problem is I know there are lots of divergent well informed opinions out there. This doctor actually was a fellow with the gi at the cleveland clinic that my son saw, and they had significantly different recommendations: budesonide vs aza or biologics. So we will listen to what he has to say. If the labs are stable and if it were me, I would try a diet (no gluten, soy,corn,) supplemental EN and supplements (anti-inflammatory) for a period of time (1 to 3 months) and if that was works continue with monitoring, and if not, probably try remicade. But he isn't me so we'll see...
 
Not to prolong this conversation :) but, if your son does need to consider meds, a couple of other points that I took into account in accepting remi and leaning towards remi vs. an immunosuppressant...

I've seen postings of studies here that indicated if remicade (or possibly any biologic??) is used as a first treatment, there is a greater chance of successful treatment. Not sure if the first treatment excludes steroids.

Also, a greater chance of success if used within a couple of years of diagnosis. Not sure how that works if you are undiagnosed for years.. ie date of diagnosis is just a 'date', so do they mean within two years of symptoms??

In any case, both of these seemed to apply to Stephen so, again my perhaps 'unscientific' logic was that if I was going to use these meds at some point, I may as well use them when they had the greatest chance of being successful.
 
I just called Swanson's, where I bought it from. I wanted to know if they checked the purity of their supplements. They do, and I explained that it was causing me problems. They told me it can do that for some people.

I have read before it can be an irritant but I was not taking a lot of it, so I was not concerned about it. Something was bothering me so I eliminated curcumin. Problem went away. I was using the kind with pepperine so maybe it was that part bothering me.

I am going to try plain Turmeric and see if that has any negative effect.

Dan
 
I understand your hesitation and have done everything possible to avoid these meds for years. However my daughter is much younger than your son and her disease is severe, as it tends to be in (younger) children. So she is on remicade, double dose, hoping it kicks in before she loses her colon.
Have you looked at the NIBD website? If he's not wanting to go on the big guns (though I disagree that entocourt is a "safe" long term med, as it does have systemic effects though you likely know this. It's not intended to be used long term yet it is rxed as such quite often and I don't know why?) Dietary modification might be his best next option. Drs Grovit and Slonim seem to have had good success, one has severe CD now in long term remission with diet himself and they are in NYC so may be close to you (out of Columbia).
Otherwise, there's a clinical trial for the SSI vaccine going on in Vancouver. If he's willing to travel and is eligible it might be something to look into further?
Good luck, it's such a difficult position to be in, I don't wish these decisions on my worst enemy.
As for the lymphoma risk, I too thought it was teenage boys who were most at risk. The RA risk has been known for some time and there have been women who have developed it but as far as I know it's boys who are still at a significantly higher risk. Does anyone have a link to information which suggests otherwise?
 
The blood work was good, Hgb 12 (anemic but better than last time), tot prot and albumin now normal, Crp modestly elevated at 1 something (down from 6 I think and 40 something at diagnosis). My son is feeling better with decreased stress and his doctor would like to increase budesonide. He has had patients on it for years w/o adverse effects. I'm trying to get my son to try an elimination diet but I'm happy the labs are good and things have seemed to settle down.
 
Tesscorm said:
Our ped GI told us the increased risk of the lymphoma exists as described by MLP, in that your risk is greater when using a biologic if you have ever used an immunosuppressant in the past, even if taken years before.

This is partly why I wasn't at all anxious to start on an immunosuppressant now instead of remi; my assumption was that we would eventually move to a biologic anyway and then have that increased risk. I'm not sure what the risk is if the meds are used in reverse... ie biologic and then immunosuppressant (ie if the biologic stops working) - I've never seen this discussed anywhere. Given the nature of these meds, I doubt there really is much of a difference regardless of which you use first but, perhaps, there isn't an increased risk if used in reverse??? There may be no real scientific basis for this logic but... ^^shrug^^ :)
Click to expand...

I wonder if there is a lack of commentary on the reverse Tess due to the combination of the biologics being a more recent addition to the treatment scene and the step up approach being an older more entrenched approach to disease management. Not the mention that most subsidised medicine protocols require a step up approach to a large degree.

Dusty. xxx
 
xmdmom - glad the labs came back with good results! :) Seems like his symptoms could very well have come from his stress levels. Maintaining on low dose steroids (plus imuran) has worked for my aunt for many years now with no adverse effects; not an ideal situation but, really, we don't have any ideal options amoung our choices. I hope he continues to feel better!! :thumright:

Dusty - Yes, what you're saying makes sense. I'm pretty sure I've read of a few members here who have gone back (or maybe for the first time?) to immunosuppressants when a biologic stopped working but I haven't seen any real statistical or medical info on results/risks. Likely, my logic, is just me trying to find some faint silver lining in moving to biologics so quickly! :ybatty:

:)
 
It seems I remember C's GI stating something similar to what Dusty said:

1. Hard to find patients that are immunosuppressant naïve at the start of the biologic.

2. Due to 1. the inverse is true, difficult to find a study pool of patients that went straight to Remicade then later to an immunosuppressant, most countries are some form of national healthcare and there is an entrenched step up therapy in their protocol.

3. He feels it is likely, that any mix of immunosuppressant/biologic produces the risk but his interest and personal research involves how much of a role Pred may play in all of it. He also crinkles his nose every time he mentions pred, like it smells bad, makes me chuckle, every time.
 
xmdmom said:
You probably know that I am a physician by training so I know about drugs, the good and the bad and the ugly, and I don't think it's an easy decision to go on immunosuppressants or biologics when your symptoms are mild. Unfortunately some people have mild courses, some severe and some in between and no one is very good at prognosticating until severe issues have happened.
Click to expand...

I just want to state that I have had fairly mild symptoms for almost the 20 years that I have had Crohn. Many of these years I was on Drugs that were ineffective, or no drugs at all. During this time inflammation was still present and doing damage to my small intestine. Now I'm facing surgery from strictures in my small intestine due to scar tissue. A short course of prednisone and Imuran (Azathioprine) have put me back in remission several times.
 

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