Son: Autism: Not feeling well, no D

Hi again.
My 25 yr old son is often saying he doesn't feel well. Due to his Autism, he isn't clear what hurts or where. He was diagnosed with UC last May and had severe D and bleeding. Sulfa meds and enemas with a bland diet "seemed" to get it under control. He gets these bad days. Slight fever, tired.. I can't tell what's wrong as he only says "everything" or "stomach and headache".
I am hoping you guys here might read this and maybe have words to fill in what he might be feeling? I realize none of us know for sure, but advice from people with this disease is really helpful to me.
We did start reintroducing some foods the past few weeks, nothing crazy, and very slowly. He says it's not a food thing... he says..
Do people get just sick and have these ups and downs?

So far I was the only one (that I could notice) with son on Autism spectrum on this board and with you, I am terrified (for my son's prognosis on UC, if any).

That being said, lot depends on your son language and cognition, because he is unable to tell you where it hurts. What is the functioning level of your son and if you do ATEC scores whats his score (to get an idea on his functioning level)? Do you have UC, that you can relate to and ask questions accordingly? (probably not, from your OP).

Here is a small questionnaire that you could pose to him
- How does his BM look like? There is something called as Bristol stool chart, ask him to tell you how does it look like in the toilet (If you have access, ask him that you want to look at it). Anything other than 4 in the chart is mess.
- Does he notice blood in his stools? or on his toilet wipe?
- With regards to pain, if there is blood in the stools and colitis is flaring, most of the times, it hurts around your belly button of little below belly button. This is referred pain from inflamed colon.
- How many times is he visiting the toilet? (If he visits anytime more than 5X a day, have Bentyl and Lomotil handy, depending on what works with him. Both of these medications help controlling cramps and the number of visits.)
- Does he ALWAYS have BM when he visits the toilet?
- Does he see only blood in his BMs?
- A question to you, what is the diagnosis with UC? Is it pancolitis, left sided UC or anything else? Depending on what the diagnosis is, the pain can be a little different. I have left sided colitis and my pain is around belly button, plus on the left side of the belly button going straight.

This questionnaire is open to updates depending on how your son responds.

With headache,
- Does he have headaches otherwise? If yes, what does he take as an abortive. If not, has he tried any OTC med to stop it. FYI, he can NOT use any of Advil or Alleve type of medications. He can use Ralefan/Nabumetone, but you need to get Rx from his physician. Advil and Alleve will worsen his condition where as Nabumetone will help but not as bad as the other two.
- Once this prime question is answered and hoping he doesn't get headaches otherwise, how does the head hurt, throbbing, pins and needles type or throbbing or any other type?
- Does the headache worsen if he lies down?
- Does light, sound or even breathing bother his headache more?
- Where does the head hurt, temples, back of the head, top of the head or all over?

Ask these questions to your son and report back. We may add/remove stuff from this questionnaire.

Now, the question about his meds. You say, he is diagnosed with UC.
- What meds is he on?
- Does he have any co-morbid conditions with Autism?
- Is he on any other meds?
- What is his food like?
- Did you run any blood work for him lately? If yes, can you tell me his liver function tests, Vitamin D and thyroid levels, if any of this has been tested?

Finally, UC is heck of a disorder with its own mind. I went into flare 10 days ago without doing anything odd. Still, if you are watchful enough, you may be able to contain it, along with luck. A word of caution, if possible, avoid putting him on meds like Humira, Remicade, Simponi, Entyvio. It helps other folks for sure, but our kids have Autism, with immune system dysfunction as one of the theories of autism, immune system is the last thing I will be playing around with.

Hope this helps.

Momhelping, what your son is experiencing IS typical for people in a flare. The point of treatment is to get him out of the flare and into remission.

The sulfa(salazine?) might be what's causing his headaches. Why was this med chosen over the other oral mesalamines? I take sulfazine (1.5 g/day) for joint pain, but I also take balsalazide (3 g/day) for my IBD. Both drugs together give me good coverage. When I started taking sulfazine my GI had me start at a very low dose and ramp up slowly, because this med can cause headache. It can also cause sun sensitivity (already had that, thank you) and low platelets, and other side effects not common to the more modern mesalamines. I would recommend a discussion with your son's GI about the choice of this particular oral medication.

Stomach aches could be a few things. I don't know if you are aware, but active rectal inflammation can often cause gastritis. I don't know why, but it's a pretty common thing. Talk to his GI about GERD and gastritis. Maybe simply elevating your son's head at night will give him relief. Maybe a ppi is a good idea. Is he using the enema every night still? If not, increase the frequency of that med. It took me years, literally, to get my rectal inflammation to go away.

Stomach aches could also just be how he is describing the feeling of his dysfunctional bowel. He might not be in a good remission yet, even if you are not seeing blood and diarrhea anymore. Stay the course.

I was diagnosed with autism earlier on this year at the age of 39. I've had Crohn's disease for 14 years (pancolitis and terminal ileum). And I do find it almost impossible to describe what it feels like: "utter crap" is usually the simplest and truest answer. A question doctors ask me is do I have abdominal pain, and I have always struggled to answer it. To my mind, if I'm not keeled over with agony, unable to do my usual things, then it's "discomfort", not pain. But say discomfort to a doctor and they won't be interested.

I wasn't ever in remission, so "bad days" were my norm: that included stomach discomfort/pain, diarrhoea, fevers, fatigue, anaemia, malaise, etc. As horrible as it was, at least I knew what I was dealing with. Now I don't even have that crumb of comfort - I don't know where I am at with this disease any more.

Probably haven't helped in the slightest, but just thought I'd let you know there was one person with autism and IBD on this site. Who understands the misery of both.

UPDATE: He kept having these bad days. None of the UC symptoms I had seen during the flares. Just the same, he doesn't feel well.." headache and stomachache" Long story, I had been working so hard to teach him ways to better explain his pain, but I still did not know. So off to the Doctor we went.... again. On that day, he started out saying he felt OK, on the drive said it was starting again, this back and forth thing, then he finally used an interesting word while talking to the Doctor, he said "it comes in waves". The Doctor called HEARTBURN. We went across the street and got Pepcid, and Simethicone. That was it!

Within 30 minutes, he was better than he had been weeks. Now, he can attach the feeling to the label of heartburn, and as been fine ever since. Wow, Of course I feel stupid not putting things together, and someone here even mentioned GERD, The headache part was a tough one that threw me. So lesson learned at least on this one.
By the way, he is still in remission. He has gained all his weight back, and is eating a normal, yet guarded diet.
All is well for now.

Post Edited (Momhelping) : 11/16/2014 9:10:30 PM (GMT-7)

Good news