Advice for my 19 year old son please?

[Ellowyne]

Hello, I am the mother of a 19 year old Son who has been having signs of Crohns for a couple of months now. My son only told me that he was having loose stools and blood in his toilet 4 weeks ago, he was too afraid to tell me. The reason he was afraid was because he knew there may be something wrong and that I would call the Dr.

The problem is that my son also has complex mental health problems...he has not left the house in over 3 years. He is under the care of the local mental health team, but, well, they are not great!....So the Dr came out to see my son just before Xmas, he has since had stool and blood tests which came back clear.

I spoke to his Dr again yesterday and she has called for an urgent appointment for him to be seen by a Consultant...I asked why she was making it urgent, was she thinking of Cancer...This is when she said that Danni's symptoms were like Crohns Disease and that he would be sent for an urgent Colonoscopy!...His symptoms also include difficulty when swallowing, and he has a lot of mouth ulcers also.

Our first problem is to get him to go to the hospital, he will have to have Diazepam to help him cope...the second that is worrying me is that I do not think he will be able to cope with the Colonoscpy if only sedated lightly...I have read that, whilst the camera does not hurt, it is the air pumped into the colon that causes so much pain...I feel he will be left traumatised by this. The Consultant has now decided that it would be in my sons best interest to be fully asleep during the Colonoscopy. We are just waiting for an appointment to come through for day surgery.

However, because my son is now unable to keep anything in his tummy and his stools are like water, his Dr has prescribed 'Codeine' to help stop the Diarrhoea?...I am a bit worried though, will this cause a blockage?...Or is it normal to have this medication as a temporary measure?...He has had a few 'accidents' where he has not been able to hold his toilet.

Please excuse me if I have rambled, this is very upsetting and I am just so scared for my son, he already goes through so much and he is terrified of people he does not know and can not communicate very well.

Please help if you can...Kind regards, Lorraine.

 

[vonfunk]

Codeine does slow down the digestive tract, it also helps dull the pain. If it took him awhile to inform you about the blood and what no, chances are he didn't tell you if he was in pain.
I've not had problems with taking codeine when I have diarrhea, it tends to help slow things down. When I'm not in a flare it can cause problems with constipation. If it's being prescribed by a doctor then he should be fine, just keep an eye on how often he uses the washroom, if he has problems going, or if he's not going every day then that could be a sign he's on too much. Drinking extra water will help a bit, if it starts working too well. And seeing as he's having issues keeping stuff down and having D, he's probably dehydrated as well.
If he starts complaining about getting charlie horses in the legs, it's a good sign he's suffering from electrolyte deficiencies. Gatorade helps with that, however I'm not sure what the UK equivalent is, I'm hoping someone will jump in and share that info.

 

[Astra]

Hi Lorraine
and welcome

I know you're very worried about this but please be assured that he will be in the best hands, and general anaesthetic would be a better option. Bleeding could be a sign of Ulcerative Colitis too as well as Crohn's. Danni really needs to get a diagnosis and the appropriate meds.
It is true that codeine may/can cause a blockage, or constipation, but only in the long term, I was taking it for 2 weeks for explosive diarrhea whilst in hospital for a blockage! It really does work for stopping diarrhea in it's tracks tho.
I work with kids with ASD, and I was wondering if your son has a carer, someone who he trusts? Someone who can help you with him and support you whilst in hospital? Does he use a communication system such as PECS or TEACCH? You could use either of these systems to prepare him for that hospital trip.
There's always someone here to help Lorraine, you're no longer alone with this
lotsa luv
Joan xxx

 

[Ellowyne]

Hello, thank you for your kind replies.

Firstly, may I ask what Charlie Horses in the legs is? He does sometimes complain of joint ache...If that is it?

Joan, Danni does have a Care Coordinator...for want of a better word!! She has been absolutly useless and has made no contact with the hopsital regarding Dannis needs...It took me to write letters to the consultant ect explaining Danni's mental health isses and how this procedure could affect him. Thankfully, they are now aware of all his special needs, hence why they have decided that it will be best for him to have a General to put him fully to sleep.

May I ask please, if he is being given a general, what type of Prep would they use before the Colonoscopy?...Would it be drink form?

Sorry for all the questions, just getting my head around all this. It is very difficult for Danni, he is terrified of going to the hospital, as far as going out he has only been able to go into the Garden for appox 3 years. He has had little help from Mental health service as they will NOT do therapy unless in a therapeutic setting???....I am a qualified Client Centred Therapist and, although not practised for a few years, I know I don't have to be in a particular setting to be empathic!!

It is also difficult becuase he finds it so painful to engage with anyone he does not know....Oh, I am rambling on now! I just hope to get him through all this so we can know for definate what the diagnosis is and so get him the treatment he needs.

Thank you for being so kind to reply...hugs, Lorraine x

 

[vonfunk]

I'm not sure what the British term is for Charlie Horse.
It's basically a deep cramping in the muscle. It's like the muscle is in knots and very painful, the only way to really get rid of it is by standing or walking on it. I've only ever heard of it occurring in the legs. They occasionally wake me up in the middle of the night.

 

[Jennifer]

Joint pain is common with Crohn's and is not the same as a Charlie Horse as that's more like a muscle cramp in the legs (calf region as far as I know).

What is your son's mental health condition? I'm simply curious, it really doesn't matter so long as the people at the hospital doing the colonoscopy are aware of it and treat him properly. You're son will remember nothing of the procedure and will have an IV where they will put in the anesthetic to put him asleep (they'll most likely give him something else in the IV to help calm him down before fully putting him asleep).

As far as the prep goes, generally pills are not given for Crohn's patients as a form of prep. It's usually a jug (one gallon) of some nasty/salty drink (but from what I learned, you drink it until you start running clear, if its not clear, then keep drinking the prep. End prep at midnight and you could have some more prep in the morning if it still isn't clear). I ALWAYS mix it with some 7UP or Sprite or any other clear liquid soda (nothing with red coloring although orange is fine but no red or purple). He will not be allowed to eat anything once he begins his prep (usually the whole day of prep) and cannot eat until after the procedure is done. Chances are he won't want to eat after being fully put asleep though as that can make many people feel nauseous. Discomfort or pain after the procedure is normal but shouldn't last longer than a couple of days and any extreme pain should be reported to the doctor if not taken to the ER immediately.

I'm willing to give much much more info but I'm sick right now and very tired and need to take a break from the computer. Many of us know the drill for a scope so feel free to ask ask away.

 

[D Bergy]

I would make sure that inflammation is not causing his mental problems. That is coming from a person who has had depression problems for over thirty years that were caused directly from low grade inflammation, which was from Crohn's. My son's anxiety was significantly reduced also using the very same method. He has an inflammatory autoimmune disease also.

It is going to take some doing given his current state of health. He is probably going to need some stout medication at this point to bring things under control Crohn's wise.

Inflammation wise there are some things you can do to knock it down a bit. None of them are risky or detrimental in any way. They are supplements I take every day, and I have taken them in the dosages below, although I use lower dosages now.

Ginger capsules 1000 mg twice a day.

Curcumin capsules 1000 mg twice a day.

Krill Oil capsules 1000 mg once or twice a day.

Pycnogenol is an optional supplement, because it is spendy. You probably can do without it. 100 to 200 mg per day.

Magnesium Citrate 100 mg per day.

All of these will also help with Crohn's to some degree.

Consult your physician first, in case any medications would interact with any of these.
Most of these supplements make the blood more slippery for lack a better term, and should not be taken in these dosages with blood thinners in my opinion, but check with the doctor if he is on any blood thinners.

Monitor his mental state. It will take anywhere from a few hours to a week for any noticable chancge to occur, and he may not be the first one to notice. I wasn't the first to notice this change, but my wife homed in on it quite quickly.

That is what I would do based on my own experience. It is his decision whether he want's to try this or not.

From my own experience, the mental problems this inflammation caused were far worse than the typical Crohn's symptoms.

http://www.sciencedaily.com/releases/2010/10/101020091857.htm

http://itsnotmental.blogspot.com/2008/04/inflammation-of-body-and-brain.html

Dan

 

[kildare crohnie]

i got a colonoscopy done when i was awake b4...its not that painfull,it just feels uncomfortable 4 a minute or 2..

 

[Ellowyne]

Waiting for appointment!

Well, Mr consultant has left for a holiday today...so no news of appointment for my son for a further 3 weeks!!...The consultant left a message to say that, if my son deteriates to take him to A & E...Like I would'nt!!

The thing is, yes, if he has to go I will take him, but this will be far more traumatic for him and I hope to keep him well at home untill he can get an appointment. The GP gave him Codeine, which seemd to make him feel more unwell...Headaches, nausea.

He has stopped the Codeine, but IS still having 8 Immodium each day...He is going to the toilet 6/7 times, very watery and loose stools. He is very tired and has some pain in his tummy.

The thing is, am I doing right letting him have the Immodium?...and when will I know that enough is enouigh and to get him to A&E?

Please help advise...I am lost and don't know what to do for my son.

Please reply, Lorraine.

 

[vonfunk]

Immodium is an opiate like codeine, however they removed all of the wonderful painkilling stuff. There are lots of people who use immodium to lessen the the D and slow things down
If the immodium starts slowing things down a lot and he's still having blood in his stool, immodium may not be the best situation for him as it can lead to further complications.

But you said that he's still going multiple times a day, so I doubt that will be too much of an issue, however I would talk with a doctor, because I know I'm not qualified to medical advice. Anything stated is opinion, and I've never taken that much immodium in a day.

 

[Astra]

Hiya Lorraine

Does Danni still have bloody stools? If so, I wouldn't recommend any more Imodium.
If this was my son, and knowing what I now know about Prednisolone, I wouldn't wait another 3 weeks til doc came back from hols, I would try to get this current flare/inflammation under control with Pred, and phone the GP/Gastro to ask for some.
But, here's the thing Lorraine, you'll need to weigh this up, given Danni's current mental health, Pred has some side effects and one of them could/may be pychosis. Very rare, but a possibility.
It would be extremely traumatic for Danni to wait in A&E for up to 6 hours! The only time I would recommend that, is if Danni gets a very high temp and is projectile vomiting. This would indicate a blockage or obstruction in the bowel.
Other than that, I don't know what to suggest. But I would persist with the GP, there must be other consultants in the gastro dept?
xxx

 

[Ellowyne]

Thank you so much for replies...Yes, the GP has said, he does need Steroid treatment, but she said that she could NOT give it to him until he was diagnosed...I think she said it would interfere with the results of the Coloscopy?...Sorry, I can't remember exactly what she said, my mind is all a blur as I have been up so many hours with Danni.

He says he has no bleeding...and he is going appox 5/7 in between needing the toilet, but when he has slept he has had accidents...I have got him some pads so he may sleep better not worried about messing his bed.

If he goes to A&E I know this will distress him so much, they will need to examine him and, well, I am just scared for him...They know that he needs the colonoscopy, but won't book it untill the Consultant see's him, which I can undeerstand...I even offered to pay to see him, but no go...Just at a loss....Lorraine.

 

[Jennifer]

That can't possibly be the only GI doc around. Many of us have traveled hours to see ours. My first GI doc worked 4 hours away from where I lived. If at all possible, make an appointment with another GI and let them know that he needs a colonoscopy as soon as possible as your current GI is on holiday.

The reason why your GP doesn't want to use steroids is because steroids (like Prednisone) work really fast and will reduce inflammation and even helps heal the ulcers inside the gut. If these areas of the gut are healed (or at least reduced dramatically), then what is there left to see to help make a diagnosis? Your son will be back where he started. For many people it takes months or even years, multiple tests and to be seen my multiple GI doctors before they get a proper diagnosis. I was one of the lucky ones where it only took about 2 months to get a diagnosis after enduring multiple tests with only one GI doc.

That's a lot of Immodium to take in one day and its obviously not doing its job if he still has diarrhea. I'd stop using it entirely. There are stronger things out there but that's like putting a band-aid on a broken bone that needs a cast. He needs strong medication. IBS (Irritable Bowel Syndrome) does not cause bleeding so if the GI says it could be that, then you know they are full of BS and you should find another GI doc.

 

[JynxGirl]

I'm not sure what your son's other mental health issues are, but is there a way you can talk him through the procedure?
I have a daughter with autism, and when she needs to go to the doctor or hospital, I talk her through the steps of what will happen in clear, easy to understand terms.
If your son is higher functioning and able to understand, maybe show him information about a colonoscopy and Crohn's disease. This might help him to be more comfortable with going to see the doctor as he'll understand the seriousness of the disorder.
Just one suggestion that might help.
Good luck!