Mom of Son with Crohn's

[sgholmes2002]

This is my 3rd post. I just realized that we should post our story to introduce ourselves. My oldest, 15 years old, was diagnosed with Crohn's at the beginning of February 2017. He sat down beside me one Sunday evening and said that he had been having bloody diarrhea up to 3 times a day for the past week. I had no idea! He never complained or "looked" sick. Of course, I took him to the local clinic with an ER facility that evening. They ran blood work, but sent us home as their was nothing that they could do for him. His blood work looked good and he suffered NO PAIN. However, doc did say for us to go to GI doc if it didn't get better by that Wednesday. It didn't get better so I set up an appointment for the following Monday with GI doc.

My son's only symptom was bloody diarrhea. He had NO other symptom. Luckily, we had a great GI doc who did a colonoscopy. GI doc was shocked. He thought before doing the colonoscopy that he would just find a polyp. Instead, he said that the condition of my son's colon was severe and that it was IBD. The biopsies confirmed Crohn's. GI doc said that my son should be doubled over in pain and is surprised that he is not. I don't know whether to be grateful that he has no pain or nervous. If he is in no pain with a severe flare-up, how will I know when it has gotten worse? On the other hand, so grateful that it hasn't slowed him down.

My son is on Azathioprine and Sulfasalazine. Unfortunately, my husband is self-employed and our medical insurance is not so great. We have no pharmaceutical coverage on our plan because it was the option that we could afford. We have had such a healthy family, who knew! Now with a pre-existing condition, not sure where to go from here. Luckily, these medicines are affordable.

I recently found out from my Aunt that my Grandmother had UC and her colon was removed at 35 yrs old. Most say that is too far removed from my son to be connected, but sure seems like it should. Besides my Grandmother, there is no one else with this condition. I do worry about my two kids; 13 year old boy and 11 year old girl.

Reading so many other stories, I feel very blessed to have my son diagnosed so quickly. He has been doing great on the medication this past month with no side affects. I do get very worried about the Azathioprine like many of you do too. I pray his journey with Crohn's stays this easy and that he gets and stays in remission for a long time.

 

[Clash]

Hi my son was also dxed at 15. He is 20 now.

I do understand where you are coming from about him not experiencing pain with his falres. My son has been asymptomatic for over 3 years yet his disease is active. In fact, he required surgery 2.5 years ago and at the time he had no symptoms except an inability to gain substantial weight. When the surgeon spoke to us after surgery he said he could believe that my son wasn't doubled over in pain.

I do think of it as a blessing and a curse. Of course we are great full he is asymptomatic but it is also such a struggle to determine the severity of his active diaease (he's had a scope every 6-9 months for over 2.5 years).

Anyway, welcome to the forum!

 

[Tesscorm]

Hi sgholmes2002,

Other than just before diagnosis, my son does not show many symptoms either. Six months before being diagnosed, my son mentioned, just in passing, that he thought he had giardia. As he happened to be doing a class project on giardia, I thought it was much too coincidental that he would randomly pick an illness he knew nothing about (he randomly picked the 'word' giardia from a list of illnesses!) and then have the symptoms! :yfaint: So, after stating his own diagnosis and prognosis - nothing to worry about mom, it goes away by itself - I thought nothing more of it (and he didn't mention it again). But, three months later, he began to have 'bug'-like symptoms - a bit of nausea, diarrhea, off and on fevers, losing weight, pale, etc. Doctor thought it was a stomach bug that was going around... he'd get better for a couple weeks, sick again for a couple weeks... this went on for almost two months. But, through this, no pain, no bleeding, no bathroom urgency, etc. My mother's cousin has crohns but as she had terrible pain, lots of bleeding, great bathroom urgency, etc., crohns never crossed my mind.

After two months of this off and on stomach bug, we took him to the local children's hospital. Four hours later, he was tentatively diagnosed with crohns.

His treatment was antibiotics (Flagyl) for one week and exclusive (then supplemental) enteral nutrition - no other meds. For two years, he felt and looked fine. However, MREs continued to show inflammation. After moving to an adult GI, we added remicade. Last couple of MREs and scopes have shown no inflammation. So, remission is confirmed. But, he feels no differently than he did before remicade (in the sense that he felt fine before).

I am so grateful that he has not struggled as much as many others who have crohns, but, I do think it becomes quite important to not become complacent and continue with active monitoring. As with Clash's son, over the past five years, my son has had 3 scopes and 3 or 4 MREs since diagnosis (including those which diagnosed crohns).

I hope your son continues in remission for a long time!

 

[sgholmes2002]

Thank you Clash and Tesscorm! It is very helpful for me to hear your stories. Our GI doc said this summer after my son has been on Azathioprine for several months, he would take him off of the Sulfasalazine and see how he does. I wish my son would at least have some other kind of indication something is wrong. He has been 6'2" since he was 14 and his voice changed in 6th grade so we won't see delayed growth either, which again is a good thing. I think every fever, every nausea feeling, I will be calling the GI doc worried it is something else.

On a side note, I am a little worried about my daughter. This year she has had the largest mouth ulcers I have ever seen (pre son's dx). I was so worried that I text pics of the ulcers to our dentist. They went away and now she complains that her knees are killing her these past two days. She is not a complainer at all so I know they hurt. Should I worry? Joint pain, mouth ulcers, of course my mind goes to CD.

Again, this forum is great. Being able to post questions and reading stories helps so much!! THANKS!!

 

[Tesscorm]

For the first year (or two!) after my son was diagnosed, I also worried that every sign meant the beginning of a flare! One of his symptoms pre-dx (diagnosis) was fatigue and I remember, months after dx, he came home from school and fell asleep... my mind immediately went to 'omg, is he unusally tired?!?!? Is it crohns?!?!?' :ybatty: Of course, it wasn't... he was simply tired that day. :lol: And, this went on and on for the first while... but, when these 'events' of tiredness or loose stool or nausea pass as they would with anyone else, you begin to worry a bit less (or, at least, you begin to 'calmly' wait and see before jumping to the worst).

As far as your daughter... and I don't want to scare you but, those symptoms could be indicators of CD. BUT, and this is a big BUT, they may be nothing more than some mouth ulcers and sore knees caused by something else (growing pains??). I also worried about my daughter (and, I think most parents have had this concern with siblings at one time or another). At one time, my daughter had a sore finger, dr ran a x-rays which showed a 'spot' of something and a blood test which came back with a slightly elevated number (I forget what it was called) that could indicate an autoimmune disease and, because of my son's dx, sent us to see a rheumatologist. I was sure that this was too much of a coincidence to not be related! But, in the end, it was nothing. Rheumatologist said spot on joint x-ray was calcium deposit from an old injury, pain was likely a sport injury which she didn't notice at the time and the blood test elevation was too slight to mean anything. Since my daughter was a little girl, she's had 'something' every months/annually and seems to be sensitive to anything affecting her body - ie headaches if she's hungry, pain if she overeats (or eats junk), nausea randomly, sometimes diarrhea, sometimes constipation, low iron at times, sore knees, ankles, fingers, elbows, strange rashes, and on and on... but, she is involved in a number of sports, follows sometimes strict fitness diets and, I believe, it's 'just her'... so now, after 20+ years, I have learned to take the same 'wait and see' approach with her. (Sorry, that was a bit of a long explanation! :blush But, my point is that you should be vigilant about your daughter's symptoms because they 'could' be signs of crohns but it's more likely to be something minor (or just her..)

:ghug:

 

[my little penguin]

Going to tag maya142
Mouth ulcers and joint pain go with spondyloarthritis
Which is common gene wise with Crohns

As for insurance your kiddo is still under 18
Most states have medical assistance for kids with chronic conditions such as Crohns
It's not income based and acts as a secondary insurance to pick up co pays and drug costs etc..

Ask your child's hospital the social worker would know in the GI office or home health

 

[Maya142]

I think you better get your daughter looked at by the GI. It could be Crohn's or something related like Spondyloarthritis. Does she have any other GI symptoms?

Spondyloarthritis is a common type of arthritis associated with IBD. It shares genes with IBD. Kids usually present with joint pain and stiffness. The knees, ankles and heels are commonly involved, though really any joint can be involved. Lower back pain and stiffness are also common. Normally kids feel worse with rest and better with movement. Sometimes joints are red and swollen, other times they look fine but are inflamed. Morning stiffness is common.

You would need to see a rheumatologist to rule it out.

It could, of course, be nothing, so try not to panic! But do get her looked at - if it's something like juvenile spondyloarthritis or Crohn's, you need to treat it immediately.

 

[kuespy33]

I was diagnosed at a similar age (14) in 2006 with Crohn's and the beginning for me was painless as well..just bloody diarrhea.

I've gone through multiple medicines, steriods, lialda, azaithioprine, sulfasalazine, remicade, cimzia..they all worked well at first then lost effectiveness after time.
Right now on nothing and going through more tests..just got into the Mayo Clinic. Good luck to you and you son!