New to this forum. Seeking Help.

Hello. I am new to the Crohn's Forum. Will try to keep my story short. I'm not a good writer and I'm honestly a bit intimidated here. But, I'm desperate! So here goes.

I have a son who is 19. When he was younger the courts appointed my wife and I guardians. He came from a terribly abusive home life and had severe emotional and psychological problems due to the abuse. But, he was a good boy who just needed a stable and safe home. He found that with us and our two natural born daughters. With a lot of help from good counselors, good neighbors, and good friends, he made tremendous progress. Over the years we bonded and we eventually adopted him. All seemed well and we were so pleased with how well he was doing in school, activities, etc. Then, during his Junior year in high school, he begin to struggle with severe cramping, diarrhea, loss of appetite, strange rashes appearing on his legs and trunk, weight loss, and severe fatigue.

We took him to the doctor, to GI specialists, to Childrens Hospital, and test after test after test was run. Amazingly, he had no physical evidence of damage in his bowels. But, we learned that his biological mother has severe Crohns disease. A $1,000 blood test was performed and it indicated that he had the genetic marker for Crohns disease.

Be that as it may, the doctors did not want to give him that diagnosis prematurely. So, his diagnosis at this point is IBS. But, given his biological mother has Crohns and all of his symptoms are Crohns like, I fear and believe in my heart that it is Crohns disease.

His fatigue was so severe that he couldn't keep up attendance sufficiently during his senior year. We had to withdraw him and he did his school work on line and graduated that way.

The GI specialist we took him too, and Childrens Hospital, all told us that there must be a psychological component since they couldn't find evidence of ulcerations and etc. in his bowels. So, we took him to more counseling and he underwent Trauma therapy to further help him with his horrific childhood. But, his Crohn's like "symptoms" did not abate. In my heart, I do not believe this is psychological.

Nothing the doctors prescribed helped. They will not prescribe anything specific for Crohns because they have not given him that diagnosis. So he suffers away in this broad diagnosis of IBS and/or that it's "psychological".

Since the Doctors haven't helped, I've turned to Holistic alternatives: probiotics, various supplements, just about everything I've read about that might help and seemed safe, I've tried. I do think the probiotics helped some. But, the last two months or so he has taken another turn for the worse.

Cramping. Diarrhea. Severe SEVERE fatigue. Rashes. No appetite. Weight loss. It's awful.

On a personal, emotional note, I've watched a boy come into our lives who was shattered. He was depressed, afraid, anxious, and unhappy. I watched that boy work through all that and become happy, adjusted, and full of hope for the future. The day we adopted him was a wonderful day for all of us. He had a family for real that would always be there. We had a son that we loved just as if he were born to us. I was so proud of his hard work and determination to overcome the past. The future seemed so bright for him.

Then this. It's like it has robbed him of everything he had to look forward too.

I'm not complaining. I'm heart broken and frustrated. I want to help him. But I don't know what to do. Seems like everything I've tried is a dead end.

I think I need to find a new Doctor. But truthfully, the GI Specialist we went to was excellent, as was Children's Hospital.

At this point I don't know where to turn, except to God and to others who might shed some light on the matter.

I'm feeling pretty lost right now. I feel like I've failed this boy. I've failed my son.

So, there's my story.

Thanks for reading it.

Welcome. You will find lots of support and advice here. There is a sub forum for Parents that you might find especially helpful.

I really wish I could clone my GI as I feel like he really truly listens, trusts me and how I am telling him I feel and would act even without a definitive diagnosis. That's the key, I think - to find the right GI. There is a forum here with doctor reviews, you might find someone near by that others recommend. Or you might want to consider traveling to somewhere that is particularly well-known and has a state of the art GI unit (Mayo Clinic, etc). There are folks here who have done that.

Don't give up! Demand answers and treatment and keep trying docs until you find one who will get your son healthy again. And if you want to come to Canada, I'll pull the few strings I have and try to get you seen here

Hello and a very warm welcome to the forum . I'm so very glad that you've joined us though very sad at the reason why you've had to. Please never feel intimidated when you're here, we will do our very best to help you and no matter what time of the day you come here there will always be someone about. I have met some amazing people and have received so much wonderful support and I imagine you will too.

You son sounds like a young man I know who came into our family just over 3 years ago. His background is similar though I believe I only know the tip of the iceberg and that was bad enough. Thankfully he does not have crohns.

I'm so sorry your son and family are going through the anguish of no diagnosis but with all the heartache. I would agree with your thought that you need a new Dr and as the last post suggested there is a list on the forum you could look at.

I'm probably stating the obvious but has it been suggested that your son follows a low residue diet, again if you check out the forum wiki you will find the info you need about it. I would also suggest keeping a food diary and include any daily symptoms as well. This can be very useful to take along to any drs appointments. I wish you good luck in finding a solution for your son, best wishes. :ghug:

Hi,

You sound like a wonderful father.
Look, I am NOT a doctor, but it for sure sounds too much of a coincidence to me... a mother with Crohns, symptoms, etc...

Did your sin get a colonoscopy/endoscopy with a biopsy in order to diagnose a microscopic disease ? such a condition may be painful without bowel obstructions, fistulas etc.

Dont let it go ! Keep pushing until you get a diagnosis. Get the right treatment. The sooner the better. This will help your son get back on track and move on with his life.

And another question - wouldnt his doctor even perform a short steroid testing to see if your son responds to it ?



Hope you feel better soon. Sometimes I ask myself why bad things happen to good people.

Thank You all for your replies. I am definitely going to browse the Doctor Directory. I really believe a new, fresh look from a reputable doctor would be the right move at this point.

Colonoscopy, Endoscopy, MRE, and Colon Biopsy did not indicate Crohns. There was some redness and a polyp, which was removed. But not enough evidence for the doctors to call it Crohns.

However, I have had extensive conversations with my son's biological mother. She has been very cooperative and, to her credit, has expressed great remorse for the past and is happy her son found a good home. Interestingly, she too developed symptoms in high school and multiple tests did not reveal crohns at first. She was told that her condition was psychological. It wasn't until she was in her early 20's that all the ulcerations, obstructions, and the like appeared and she was officially diagnosed with Crohns. So, again, if genetics have anything to do with this, it appears my son is experiencing the same.

I suggested a round of steroids to both our GI doctor and to the doctors at Childrens hospital. They were reluctant because he has struggled with depression and anxiety in the past and they were concerned that without a clear diagnosis of crohns, they might cause more harm than good. Honestly, I think they are being overly conservative and a trial run of some of the medications that help with crohns would be worth a try.

So, again, I think we need a new doctor.

Thanks for all the suggestions. I am new to the forum so your advise is already helping me to get the most out of it. And your support means a great deal to me. I really mean that.

Thanks.

Hi Snarrl and :welcome:

I am so very sorry to hear about your lad.

I am not in the US but please pop by the parents forum:

http://www.crohnsforum.com/forumdisplay.php?f=49

…as the majority of parents are in the US and they will be able to give you great advice on where to seek help and further opinions.

Do you keep a diary (track) of your son’s symptoms? If not have a look at the suggestions we have in the wiki:

http://www.crohnsforum.com/wiki/Diary-Inclusions

…by tracking symptoms it can help fit the pieces of the puzzle together, not only for yourself but for the health professionals too. Also when you are living this day in and out it isn’t hard to forget things and loose track of what is normal and what isn’t. By that I mean change can be insidious and what was once abnormal starts to become normal and you don’t give it a second thought. Not that I am suggesting you are doing this! :eek2:

Now the thing with Crohn’s is…it is not at all unusual for the EIM’s (Extra Intestinal Manifestations: Inflammation outside the bowel) to show months and even years before the intestinal evidence does, just as your lad’s biological mother’s did. Have a look at this thread and see if anything rings true with your son:

http://www.crohnsforum.com/showthread.php?t=22407

…that thread is located within the EIM forum.

It is also not unusual to have negative test results if you don’t have intestinal inflammation, unfortunately it is also not that uncommon to have negative results if you do! Where exactly is your son’s cramping located in the abdomen?

Has he had a faecal calprotectin done? Although with no obvious inflammation it will likely have a negative result but worth running anyway as it is a test specific to the bowel.

Have they ever mentioned doing a Pill cam?

If they haven’t already done so I would have bloods drawn for levels of Iron Stores, Folate, B12, Magnesium and Zinc. Also keep copies of all test results received…bloods, imaging and so on.

Welcome aboard and good luck!

Dusty. xxx

I think if you believe this is not psychological, you should stick by that belief. (What does your son make of this, btw? Does he feel the same way as you?)

So many of us were told we “just” had IBS. Doctors can always support the IBS/stress/psychological theory when they want to. Your son’s horrible childhood gives them an obvious reason to claim the disease to be psychological. But in my case, when I got ill I was a teenage girl who was complaining of stomach problems and losing weight, but who had otherwise led a charmed life up until that point. So my doctors decided I had anorexia – because I perfectly fit the stereotypical high-achiever, middle-class white teenage female that is widely associated with anorexia. If your son had had a normal happy childhood, they would still find something to explain away his symptoms as psychological if they really wanted to.

I agree with the replies you’ve already received that advised you that finding the right doctor(s) is key. There is a lot to be said for treating the symptoms even without a diagnosis. That said, I do understand doctors’ reservations about steroids. Steroids have major mental and physical side effects, and without a diagnosis, your sons’ doctors cannot accurately assess whether the probability of success outweighs the probability of risks. I’m not saying it wouldn’t be a possibility to try steroids, just that I understand where the doctors are coming from in this instance.

The reality is that you could still be waiting indefinitely for a diagnosis: there are medical mysteries out there – I’m one of them; besides Crohn’s I have an incredibly rare disease as well as some symptoms that remain unexplained after well over a decade of searching for answers. I truly think the best thing you can do is start living with the illness without feeling like you're always waiting for the point where you get answers.

You can still get an incredible amount out of life even with the most horrendous symptoms. It’s unrealistic to say he can do anything he wants, anything that a healthy person could do, but there may well still be a great deal which he can do. Look at how he found a way to graduate without being able to attend school - this is a massive achievement!

Keep going with appointments, tests and treatment trials as long as it still feels productive. If it gets too much, take a break and resume the quest for diagnosis and treatment when he’s ready. Compartmentalise so that the illness is in the background of his life and his thoughts as much as possible, and only bring it to the fore for the time he is actually in the doctor’s office or hospital.

This is just my advice having struggled through getting sicker and sicker without a diagnosis all through my teenage years: above all make sure he maintains a life outside of being ill, that he continues to have a social life and education as much as it is at all possible. These things are so important.