Crohn's Disease Forum » Your Story » Son newly diagnosed


07-18-2018, 08:14 PM   #1
Harley
 
Join Date: Jul 2018
Location: North Richland Hills, Texas
Son newly diagnosed

I'm joining this group because my young adult son (25 yrs old) was recently hospitalized and diagnosed with Crohn's and UC.


We are very close so I have started researching to find out everything I can so I can help him with his journey into Crohn's and UC and live as normal life as possible with both.


Before he was diagnosed he became deathly ill. We went to the ER several times and he was either just sent home or given an IV and sent home. After 3 such visits my husband called a hospital in a neighboring city and had a tantrum on the phone which prompted them to ask us to immediately bring him in and they would see what they could do... We took him in, they immediately admitted him and the GI showed up in about 30 minutes - they did an emergency Colonoscopy and Endoscopy because the GI felt my son wasn't going to make it another day....that saved his life.


Now we are trying to navigate this whole new way of life for him. I've done extensive research on diet etc and being celiac myself nutrition and tasty food isn't an issue.



His most recent blood test came back low RBC and low Hemocrit so we are researching to find what supplements people with Crohn's take to help with anemia.



Any and all advice is welcome.


I look forward to being a part of this group!
07-19-2018, 02:58 PM   #2
Tesscorm
Moderator
 
Tesscorm's Avatar
 
Join Date: Jun 2011
Location: Ontario

My Support Groups:
Welcome Harley, I'm glad you found this forum - lots of great information and advice! My son is 24 but was diagnosed at 16. But, regardless of their ages, they are still our children. And am very glad your son finally got the help he needed from the hospitals!!

I can't offer a lot of help re diet. What I know is that diet doesn't cause or trigger crohns, however, diet can help in managing symptoms. 'Sharp' pieces of food should be avoided such as pieces of nuts, corn, seeds, etc. As well, fibre can be difficult to digest. Some have problems with dairy. This is especially important during a flare. My son is in remission and eats everything without problem (but, he's been in solid remission for a number of years).

There are people who have tried the SCD, paleo, IBD-AID (I'm not sure if this is the correct name??) diets. Some have had some success. Many have tried elimination diets where foods are eliminated and reintroduced slowly to watch for reaction.

The one diet that does work is exclusive enteral nutrition (EEN). But, this is used only for short periods. It is used to try to induce remission and, sometimes, is used off/on with meds to help boost the meds' benefits. EEN is a liquid only diet where the only 'food' is a nutritional formula. It is usually used for 6-12 weeks. There are various types of formula - elemental (most broken down and most easily digested), semi-elemental and then polymeric (examples of polymeric would be Boost, Ensure... the least broken down). The more broken down, the less your intestines need to work to absorb nutrients. Downside is the taste - the more broken down, the worse the taste. My son used an elemental formula, for six weeks, through a naso-gastric tube (no tasting) as his initial treatment (in place of steroids). He then did enteral nutrition (ie not 'exclusive' so formula is used as a dietary supplement) to maintain weight and nutrition.

You'll find lots of info on EEN and EN on the forum.

I'm happy to try to answer other questions for you but have to run out in a couple of minutes...

Just know that, while it can sometimes take time to find the right med and dosage, and some meds take time to work... once your son is in remission, he should be able to get back to his usual life.

My son has just graduated from university, is working at his job, has a vacation with friends planned in August, plays hockey, goes out with friends, etc... all the normal things. He has been on remicade for approx. 5 years now and goes for infusions every 6 weeks. Aside from his infusions, I think crohns barely crosses his mind.

Best advice for now is learn as much as you can and have patience. Unfortunately, not everyone reacts the same to the meds and there can be some frustrations in getting to remission... but, also, sometimes the first med works like a charm!

I'll try to check in later and answer any questions you have... but, in the meantime, I'm sure others will be along with great advice!

__________________
Tess, mom to S
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
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