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New. Son with Autism. Now UC

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Posted 8/31/2014 9:36 AM (GMT 0)
Hello all. I have been reading here for a few months now. I have a unique situation here, obviously. I have a million questions, but let me start with this. My son, 25, can't swallow pills. He is taking Sulfa (dissolved which would seem to not work as it needs to dissolve in the colon)? and enemas with controlled diet. He can't tell me what works but he is in remission now for 2 months. Any idea with the meds since he cant take the pills?
Thanks all, I have been reading and I hope besides asking, I can help one day.
Posted 8/31/2014 1:30 PM (GMT 0)
Do you know how far up his inflammation is? Most UCers do really well with rectal meds and perhaps that's what has gotten your son to remission.

I gather from your post that he doesn't have effective language skills?

Welcome to the forum!
Posted 8/31/2014 2:15 PM (GMT 0)
Not really sure what you are asking. If he is in remission I would just keep doing whatever it is you have been doing. You may be overthinking everything.
Posted 8/31/2014 2:17 PM (GMT 0)
sorry for the addition to your presumably already challenging lives -

pretty much what gar said - you must be doing things right - so good luck and keep at it -
Posted 8/31/2014 3:03 PM (GMT 0)
Sorry, I wasn't entirely clear, and I doubt I can be in a post or two as his situation is complicated. And me being so new to this, I am probably not explaining things well, my apologies. His first flare, he lost over 40 pounds ( from 185. 5'9"), laid in bed screaming, D and blood non stop, cramps, severe anemia, etc... Doctor wanted to start Remicade right off, but I balked being new to all this.. long story.

He is using enemas. His colonoscopy showed moderate to severe left sided. I do not know how far up, but I will get his records and get back here with those details.

about the meds. The Doc has said not swallowing them "whole" will not work. I have been doing this anyway (dissolving them). There is still a question of whether it's Crohns. He was unable to complete the MRI with the barium contrast.

He is very verbal, high intelligence, but unable to identify where and when things hurt or what medications work best or are causing side effects. Not uncommon with people with Autism to have difficulty identifying where their pain is or expressing it in words. Often I get " What is hurting? " I don't know" when clearly he isn't well.

I know I am throwing too much out here, but as with many people, I am sure, this has launched him into a horrible depression.

Ok so with that background. I have 2 questions for now:
1- anyone have experience not swallowing the pills whole? Or know of anyone or ideas?
2-Since he seems in remission. No D, no blood. What can he eat? I read anything...to...omg be careful of anything...
I realize this is a bit all over the place. Thanks for any input!!
Posted 8/31/2014 3:20 PM (GMT 0)
If the pill isint meant to be dissolved, doing it yourself will completely negate the effects of the drug. They are designed to be broken down (and thus have the drug released) under certain conditions (certain pH levels, after a certain amount of time, in the presence of certain bacteria, etc) so right now it is all going to his stomach/proximal small intestine and doing nothing. Im not really aware of any liquid mesalamine drugs unfortunately. Definitely ask your doctor though. Its amazing that he can take enemas though, that will save both a of you a HUGE amount of trouble.

As for diet, no one can know except that two of you. Its a whoooole lot of trial in and error. Some foods trigger flares while others just bring back temporary symptoms, while some people can eat w.e. they want and feel fine!

When his disease does relapse and IF the enemas stop working, dont be super opposed to the biologic therapies. They are not as scary as their warning labels make them out to be, and are a great alternative to oral meds
Posted 8/31/2014 3:54 PM (GMT 0)
Thanks for the additional info, momhelping. I think you are doing a great job helping your son through this.

Perhaps he would be interested in learning about the digestive tract. I think he can probably learn to understand where things hurt if he has the lingo and knows the names of the various parts of the bowel.

Keep up with the enemas and don't stop!

Talk to his doctor about vitamin D, too. He needs a blood test to see if his levels are normal. If they are low, get him out in the sun for more time every day, no sun block. Most of us take vitamin D supplements, perhaps there's one that's not a pill.

Another thing you can do for him is to add probiotics to his diet. Since he won't swallow pills, I'd recommend active culture yogurt and naturally fermented foods (available now in most high-end groceries in the refrigerated section) like pickles, sauerkraut, etc. The home-made yogurt recommended for the Specific Carbohydrate Diet is chock full of probiotics.

As far as food goes, it is true that everything is individual. Your son will need to learn how to communicate his symptoms accurately if you want to try and figure out what foods work and don't work. In general a healthy bowel should be able to take care of whatever is delivered. In truth, most of us are sensitive to some things.

You might consider a gluten free diet and/or a lactose free diet. Lactose is a very common bowel irritant for most adults, UC or not. Gluten is the next most likely candidate for sensitivity. Lactose is easily removed, gluten less so. You can evaluate improvement with lactose-free diets after a day or so; you need to be truly gluten-free for a few weeks to get a good sense of whether this is an issue.
Posted 8/31/2014 3:58 PM (GMT 0)
The pills are designed to release past the stomach, where they are needed. By dissolving them they are not being used as intended. These meds are not systemic, they are supposed to be targeting further down, which is where the problem is and they can't do that if you are dissolving them. Having said that, I am a very big believer in the saying, "if it ain't broke, don't fix it". If he is in remission I would be very wary of upsetting the apple cart by changing anything from the dissolved meds to the diet. If it works then why change anything?
Posted 8/31/2014 4:28 PM (GMT 0)
Thank ALL of you for the comments. I get these pills are 100% meant to be dissolved in the intestine and colon.. that said, I find it odd while he experiments taking them , they dissolve at a hyper speed in the mouth... got me to believe perhaps some good having him take them in this manner. I hear what you all are saying. Perhaps it has nothing to do with his remission? and I don't want to wreck his stomach with harsh meds not meant to be there.
I am searching out help in this area from UCLA, Cedars, Mayo, but more importantly, you people here that, I think, know best.
Yes, he tolerates and even says the enemas are "soothing". He hasn't had problems with them so far. I was told 3 times a week? I am going to ask if there is a reason he cant use one every night?
We are on soy, no cheese , when possible. VSL#3.
I appreciate the comments to keep doing what I have been, but I can't tell you how IN THE DARK I feel... SO new to all this..
Thank you all. I know new people, like me, can be repetitive and annoying.
I am a single Mom. My other son has Aspergers. so my life is packed and I really appreciate your input!! :)
Posted 8/31/2014 4:36 PM (GMT 0)
You're not repetitive and annoying at all. Sounds like you have got your hands full. If I were in your same shoes I would be doing the exact same thing. I know I tend to over analyze things and you may need to consider that too. While we need to search out answers ourselves in some instances it can hurt more than it helps, not that you should stop, just merely take it into account.
Posted 8/31/2014 4:41 PM (GMT 0)

kazbern said...
Thanks for the additional info, momhelping. I think you are doing a great job helping your son through this.

Perhaps he would be interested in learning about the digestive tract. I think he can probably learn to understand where things hurt if he has the lingo and knows the names of the various parts of the bowel.

Keep up with the enemas and don't stop!

Talk to his doctor about vitamin D, too. He needs a blood test to see if his levels are normal. If they are low, get him out in the sun for more time every day, no sun block. Most of us take vitamin D supplements, perhaps there's one that's not a pill.

Another thing you can do for him is to add probiotics to his diet. Since he won't swallow pills, I'd recommend active culture yogurt and naturally fermented foods (available now in most high-end groceries in the refrigerated section) like pickles, sauerkraut, etc. The home-made yogurt recommended for the Specific Carbohydrate Diet is chock full of probiotics.

As far as food goes, it is true that everything is individual. Your son will need to learn how to communicate his symptoms accurately if you want to try and figure out what foods work and don't work. In general a healthy bowel should be able to take care of whatever is delivered. In truth, most of us are sensitive to some things.

You might consider a gluten free diet and/or a lactose free diet. Lactose is a very common bowel irritant for most adults, UC or not. Gluten is the next most likely candidate for sensitivity. Lactose is easily removed, gluten less so. You can evaluate improvement with lactose-free diets after a day or so; you need to be truly gluten-free for a few weeks to get a good sense of whether this is an issue.

I completely agree. Excellent advice for your son's situation.
Posted 8/31/2014 4:49 PM (GMT 0)
I HOPE I am over analyzing!! In all seriousness. He was so distraught, depressed and talking about wanting to die ( no, he made no attempts), but I went into high gear. I have seen a lot in my life. I have never seen anyone go through something like this, and I feel for ALL of you dealing with this. It's terrible for anyone. Sadly, add Autism, and .... well, you get it.
I will keep posting, and reading.
I learned so much reading all your posts here. Thank you so much!
Posted 8/31/2014 5:03 PM (GMT 0)
You can use mesalamine enemas every night. You should not use steroid enemas at all unless he is in an active flare.
Posted 8/31/2014 5:35 PM (GMT 0)
Ya, there shouldnt be any reason he cant use the enemas every night. They are a very safe drug and pretty much only work topically. If they work, you should be good. But obviously check with your GI before hand, he may have a reason for suggesting you only use them 3 times a week
Posted 8/31/2014 5:35 PM (GMT 0)
Have you asked about pentasa sachets? I have pentasa tablets and even those say they can be dissolved in water and then drink. As long as you don't chew the tiny little pellets it works.
Posted 8/31/2014 6:45 PM (GMT 0)
There are cups you can buy online which may help him swallowing the pills. Go look them up. I have a huge problem with this too. Also what helps me for years now is, swallowing the pills with yogurt. Sounds funny but it really helps!

I want to suggest to you the SCD diet. It's known to help primarily with gut issues but it was later found that it also helps with autism. Another thing which is important is probiotics, preferably VSL#3.

Good luck.
Posted 8/31/2014 6:46 PM (GMT 0)
I'm the UCer, but my 16-yr old daughter has Aspergers and has a lot of sensory issues, so I can empathize with your situation! Swallowing pills is a major battle every night, she can only get them down in spoonfuls of applesauce - you've probably already tried something that simple, though.

The higher level meds involve needles, IVs, blood work - which are a huge problem for my daughter (involving numbing creme and anti-anxiety meds) - hope your son isn't as traumatized by needles as she is. On the other hand, it wouldn't be a daily battle.

It must be very stressful for you - good luck.
Posted 8/31/2014 7:03 PM (GMT 0)
One more thing I thought of: taking oral mesalamine the way your son is might lead to Salicylate Toxicity: http://emedicine.medscape.com/article/1009987-overview

Usually when we take oral mesalamine that is meant for the colon, it doesn't dissolve until it gets there. Once in the colon, there is very little systemic absorption. Pentasa is the one exception to this: it is meant to be active throughout the gut, and can result in toxicity. I had this - it gave me tinnitus, which resolved when I switched medications.
Posted 8/31/2014 7:50 PM (GMT 0)
Not sure how different sulfazine pills are compared to mesalamine pills. I don't know if we can give the same exact advice for both.
Posted 8/31/2014 7:54 PM (GMT 0)
I got a diagnosis of autism spectrum disorder this year. I was diagnosed with Crohn's at 25; I'm now 39... feel so old... :-/

Unlike your son I wasn't depressed when I got my diagnosis, because it was so mild. I didn't really believe the diagnosis and thought it was something which would go away, in all honesty. I couldn't have been more wrong if I'd tried. Anyway, long story short, I never got into remission and got worse - much worse. Had no problems swallowing pills, so not sure what to advise you about that - would burying the pills in some food help?

Something you said rang a bell with me:

He is very verbal, high intelligence, but unable to identify where and when things hurt or what medications work best or are causing side effects. Not uncommon with people with Autism to have difficulty identifying where their pain is or expressing it in words. Often I get " What is hurting? " I don't know" when clearly he isn't well.

I found it hard to identify my pain and underestimated it as a result. More seriously, doctors underestimated my disease too, because I couldn't explain myself. As horrible as it is, your son should try to learn to communicate with doctors by asking questions, requesting test results, etc. I hate all that. Yet if I don't do it, the doctors won't bother telling me anything of their own accord: I learnt this the bitterly hard way.

Good luck with your son. The fact that he is in remission already means his prognosis is quite good - it shows he can get into remission if nothing else!
Posted 8/31/2014 9:38 PM (GMT 0)
"The pills are designed to release past the stomach, where they are needed."

No sulfasalazine like Colazal can be crushed and eaten in food like apple sauce. They are not coated but prodrugs that are enzymatically cleaved in the colon to produce mesalamine (5-aminosalicylic acid or 5-ASA).
Posted 8/31/2014 9:50 PM (GMT 0)

toomuchpoopin said...
Have you asked about pentasa sachets? I have pentasa tablets and even those say they can be dissolved in water and then drink. As long as you don't chew the tiny little pellets it works.

These sound perfect. Though it sounds like you've done quite well managing with what you're using. In my opinion, whatever works is great. I am so sorry he is dealing with UC. As if autism isn't enough.
Posted 8/31/2014 11:42 PM (GMT 0)

kazbern said...
You can use mesalamine enemas every night. You should not use steroid enemas at all unless he is in an active flare.

This is great point. What kind of enemas?
Posted 8/31/2014 11:47 PM (GMT 0)

AZYooper said...
"The pills are designed to release past the stomach, where they are needed."

No sulfasalazine like Colazal can be crushed and eaten in food like apple sauce. They are not coated but prodrugs that are enzymatically cleaved in the colon to produce mesalamine (5-aminosalicylic acid or 5-ASA).

This is good point It is cleavage - not enteric coating with sulfasamine. As long as stomach acid does not do the cleaving, they should be OK though small intestine, then cleave in colon.
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