New here & my name says it all!

[MomofIBD's]

Hello everyone! I have 4 boys, 2 of them have Crohn's, 1 has IBS & 1 doesn't have symptoms but the Dr's want him tested. My oldest son's wife was DX with Ulcerative Colitis a month after my grandson was born. My oldest son was DX in college (about 5 years ago) after he had emergency surgery for 2 abdominal abscesses were found in the ER. He had been in the hospital a month before & was in the process of testing for Crohn's, all tests were coming back neg for Crohn's. 5 days after a bowel resection he was DX only after the biopsy came back positive. Then my DIL was DX with Ulcerative Colitis 2 1/2 years ago. Was hospitalized 5 times the first year & now is on remicade & is very very close to getting her colon removed. 2 years ago my next son in college was DX with IBS after emergency surgery for appendicitis. Long story but the appendix were perfectly pink & healthy. No surprise as he had been seeing a GI Dr. for problems. Finally the Colonoscopy was done & after 3 polyps were removed he was DX with IBS. Then fast forward to this fall my youngest son age 11 at the time was having a little bleeding, the big "D" & some pain was DX with Crohn's. His disease was only detected in the ending 6 cm of the small intestine. So what should of been a mild case (& the Dr. says still is) has not been easy. He has had C-diff 2 times since December. Still on the Vanco with 2 months yet to go. His blood tests look "Pristine" as Dr. says. But he has missed 20 days of school & has gone into school just as many days late. Nausea & pain every day. But when we started this all he didn't have any nausea & hardly any pain. I wish I could make it all go away!

 

[Crohn's 35]

Welcome to the forum!!! I too had a perfect appendix but the surgeon said it was microscopically leaking...guess we will never know. Turns out I had an abcess but the antibiotics took it down for awhile and then a first laproscopic resection. I too have sibs who have Crohns, an older sister, who bleeds, and I do not, my brother has UC and another brother has IBS. Uncles who all have IBS as well, so it can run in families. The younger you are the more the risks. Many people here have had pristine intestines but still have many symptoms. This disease is very tricky and unpredictable. Harder for guys because it is embarrassing enough for them, but we all learn to cope. Could be a good idea down the road for them to come on here and check out how much info and support, so many from all over the world and college people too.

You are a good parent to come on here and seek out this disease for your sons. If we can help in any way or you just need to vent or get support, we are here. Welcome aboard!!!

 

[MomofIBD's]

Pen, Thank you for your support. My DH & I have been there for our 2 oldest boys but they are & were adults when they were DX with Crohn's & IBS. Our 12 year old is another ballgame so to speak. He is taking a probiotic, vancomiacin, prilosec, zantac, pantasa, & a multivitamin. The better his blood tests got the sicker he has been. Nausea, pain, & "D". The Dr. wants him off all milk products till we can get the lactose testing done. He used to eat anything & everything (almost, as he knows that some foods bothered him)! But now he doesn't want to eat much of anything because of the nausea. I guess my ? is if the blood work is coming back REALLY GOOD can he have a flare going on? He has a good threshold for pain. He is a sports guy & is also wrestling through all this going on. The coaches are really good through all this & give him leeway when he is at his worst. He gained 15 pounds with the prednisone so his weight is not an issue YET. But I worry about this new eating pattern that he has gotten into with the nausea. There is not much nutrition. I was looking at a product that someone at work had the other day (I am a CNA). It's called Boost Breeze in a clear orange flavor. As the others appear to be milk based. He needs something with nutrients in it & I was wondering if anyone has tried it & if so how they did with it. I understand there is no exact science with IBD's. Thanks again for any help!

 

[Crohn's 35]

I like and can tolerate the Ensure, and they have a some clear kinds too. That is important for growing boys. When I was in the process (back in 1993) of being dx'd it took so many ultrasounds, ct scans, barium follow throughs and colonscopies for year and finally got diagnosed. Crohns as you may know is from mouth to anus and for myself, the colonoscopies tell more of story and the biopies.

The only issue they need to deal with is taking proper amounts of vitamin D3 and calcium because of prednisone and antacids. I dont drink milk, havent in years, I like the Rice Dream and only dairy is old cheddar, doesnt bother me. Taking digestive enzymes can also help to digest and break down protein which is hard to digest. Raw veggies are not in my diet either, I steam everything. The Boost or Ensures are a good bet and keep the nutrition in. Hope this helps. Nausea is common in Crohns, and fear of pain also stops an appetite. Anything else I can help you with just ask. Lots of people here to help as well. Hang in there!

 

[MomofIBD's]

Luckily his regular Peds Dr. knowing the family history sent him right away to a Peds GI Dr.. The Peds GI Dr. then in turn scheduled a colonoscopy & a endo scope right away for the same reasons. But he was just as shocked as we were that he had crohn's. If he had not had brothers with IBD & IBS he would have not tested him for it right away.
The GI Dr. also tested his D level which was slightly low & was treated with the big ones for 2 months. I just don't want the levels to go down now that he is off all milk products he could tolerate cheese well & ice cream well up till a month ago. I see changes in the diet happening more.
In April he will be going to a week long camp for 6th graders (5 days & 4 nights). It is a special camp they have every year for all 6th graders in our school district. I am starting to worry how he is going to cope with all the issues he is going through with eating. I know we will get through it. But I need to start thinking outside the box now so that we can keep on top of it all.
What kind of digestive enzymes? I see you live in another country so I am not sure we would have the same things in the US. Could it possible be a health food store product that is universal? Again thanks for the help.

 

[Crohn's 35]

HI there, I know digestive enzymes are in the states, and either the pharmacies or health food carry them. They differ on what foods and fats they break down, best are the fats and proteins. Most also digest dairy as well, check the lables. Another forum member has gotten me on good Vitamin D3 I know they have them in the states, most people diagnosed are low in vitamin D but D3 is the most absorpable. I use this brand, and are in gels so it absorbs better. Alot of people take tablets and end up staying in the system and doesnt break down.

http://www.naturesbounty.com/product/015605

 

[DustyKat]

Hi and :welcome:

I'm glad you found your way here 'cause there's loads of great info and support. Although I only have 2 children there are some eerie similarities with your story. My daughter also only received her diagnosis after emergency surgery and my son is only recently diagnosed. His symptoms were also very mild and not long in duration and biopsies placed the disease as mild to very mild. I wouldn't even have taken him to the doctor if his sister didn't have Crohns. Matt has also been plagued with problems since diagnosis which I wasn't expecting when we had such a quick diagnosis (2 weeks tops).

I hear you loud and clear on wanting it all to go away! I hope you stay around so we can get to know you better. Good luck and welcome aboard!

Take care, :hug:
Dusty

 

[MomofIBD's]

Pen thanks again I will have to look into the enzymes. Just wondering how they work to help? Daniel is doing a little better & is eating more as the nausea is subsiding some. I have him on a chewable gummy D3 calcium which I also take. Very tasty!

Dusty it is very eerie how our children have similar time lines & problems. I have been coping for a long while....but some days as new problems arise it gets to be too much to see your child go through so much so young. I know so many with IBD's go through far worse....but it's so unpredictable that you never know whats around the next turn for them. We can only hope it's something better!

Hanging in & So thankful for the support! Julz