Recently Diagnosed with Crohn's Disease at 17

[JoeSoup]

:sign0144:​

Hey everyone! I've been looking around this forum for advice and stuff for the past month or so and I finally decided to make an account and share my recent experiences with Crohn's disease.

Before my diagnosis on the 1st of this month I had been having stomach pain, nausea and a couple of other stomach-related problems for a little over a year. At first it was tolerable and I wrote it off as just food poisoning or a bad stomach bug. As time went on however, it started to get worse. It got so bad in fact that I was doubled over in pain most days and missed a lot of school.

After a particularly bad week my parents took me to my pediatric doctor and she sent us to a gastroenterologist. After checking me out she immediately knew something was wrong. They told me I'd go through a bunch of tests to rule out the different things it could be, since there are a lot of things that could be causing my symptoms. A couple of tests later I ended up having both an EGD and Colonoscopy with biopsies. After receiving the results, they were pretty sure they knew what it was; Crohn's Disease.

After the scopes they didn't tell me it was 100% sure, but they said it was very likely that I had Crohn's. I had to do a couple more tests after that and in that time I had only gotten worse. I dropped to only 110 lbs, the muscles in the top part of my right leg had swollen so much it caused me to walk with a limp and it used to take so much out of me just to get around the house or get up in the morning. On December 1st my gastro doctor finally diagnosed me with Crohn's disease and prescribed me prednisone 5mg to take eight times a day (four in the morning and four at night and then taper down by 1 tablet a week), mesalamine 1.5g, azathioprine 50mg and ondansetron 4mg to take when I feel nauseous. She also recommended I take iron tablets for my anemia and Vitamin D supplements since I wouldn't be going outside as often.

I've never been one to be able to take pills easily so to say it was hard adjusting to taking that much medication would be an understatement, especially the giant mesalamine capsules. I was only on those for two weeks before I started having a horrible cramping pain in the lower right side of my stomach. I eventually ended up in the hospital on the 21st. I got a cat-scan and they found that I had an abscess the size of an orange laying right on top of my appendix. They put a drain through my back to get to it and hooked me up to an IV through a picc line. When they weighed me I had dropped down to only 100lbs. I'm still in the hospital, I'll be here until the 5th which is my next cat-scan. It sucks that I had to spend Christmas here and that I'll have to spend New Years here too but I've been having family and friends visit so it isn't that bad. They put me on TPN and antibiotics as well as a couple of other medications that I can't remember.

I'm recovering very quickly, I haven't had extreme belly pain since the drain was put in and I can even walk around on my own again! They put me on only TPN at first but I've worked my way up to a low residue diet. I've gained back 13lbs since I arrived. If my cat-scan on the 5th looks good then they'll remove the drain that day and I'll be able to go home soon after. I'll still have the picc line, TPN and antibiotics but I might be able to take the antibiotics orally and they're currently working on speeding up the TPN so that there are hours in the day where I'm not hooked up to the IV.

So, that's my story so far. I'll update this thread once I get my cat-scan or get any more news on my current situation.

Does anyone have any advice for dealing with Crohn's in the future? I would love to hear the experiences of people who have had Crohn's for a while and how they live with it.

 

[ronroush7]

Welcome to the forum. I am glad they have been able to help you. I wish you the best on your cat scan.

 

[CYY]

Hello JoeSoup! Welcome to the forum. I'm so sorry that you're having such a hard time now and spending both Christmas and New Year in hospital.

I'm 16 this year and I was just diagnosed with mild to moderate Crohn's about 3 weeks ago. Having Crohn's is tough for sure, especially for teens like us. I lost quite a lot of weight before I was diagnosed and now I'm on EEN trying to gain it back.

Although I cannot give you concrete advice as to dealing with Crohn's in the future, as I don't have much experience myself, all I wanted to say is that you've made the right decision joining this forum. Whatever your troubles might be, feel free to pour them out to us and I'm sure many of us would gladly lend you a listening ear. ●‿●

I like to think of Crohn's as more of a lifestyle modification, rather than a lifelong disease. Of course, I have had my share of tough days, but I do try to motivate myself that tomorrow will be a better day. As Robert H. Schuller once said, "Tough times never last, but tough people do."

Hope that the results of your CAT scan would be music to your ears.

Here's wishing that you'll get well soon,
CYY ^^

P.S. I agree that large pills are a pain but it seems that needles feel worse to me? XD

 

[ronroush7]

For the future, you might try a food diary to see what foods aggravate your gut

 

[Ricky_V]

Welcome to the Club that you don't want to be a member of. My two daughters have Crohn's, but we have been pretty lucky so far. My early advice:

1) Make sure you have good health insurance, you are going to need it
2) Make sure you have a GI very experienced in Crohn's if not, switch doctors
3) Make sure you are up to date on your immunizations that require live virus
4) Start aggressive, get on a biologic and immunosupressor as fast as possible
5) Avoid smoking and alcohol


I am not a doctor... just my take

 

[charlottem]

Hi there! Im also 17 and im not sure if i have crohns/colitis but ive had inflammation in my ileum and stomach. I have also been on tpn and Im now fed through my PEGJ tube entirely. If you want to chat anytime just send me a message, Im on here pretty frequently x

 

[emmaaaargh]

Welcome to the forum! It's super supportive here, even though we're all sorry you had to join us

I was diagnosed with Crohn's just after my 9th birthday - I'm 18 now - and honestly I think the best advice I can give you is to remember to take care of yourself. It's really important to look after your mental health - it really takes a beating with this disease, and it took a few years before it started to wear on me, so I didn't even notice at the time and had an awful few years before I started to be kinder to myself. Make sure that you give yourself some credit, and treat yourself every once in a while, because what you're going through is really hard, and most people wouldn't have the stomach for it (no pun intended)!

Wishing you all the best, and I hope you can go home soon!

 

[ronroush7]

Welcome to the forum! It's super supportive here, even though we're all sorry you had to join us

I was diagnosed with Crohn's just after my 9th birthday - I'm 18 now - and honestly I think the best advice I can give you is to remember to take care of yourself. It's really important to look after your mental health - it really takes a beating with this disease, and it took a few years before it started to wear on me, so I didn't even notice at the time and had an awful few years before I started to be kinder to myself. Make sure that you give yourself some credit, and treat yourself every once in a while, because what you're going through is really hard, and most people wouldn't have the stomach for it (no pun intended)!

Wishing you all the best, and I hope you can go home soon!

I agree.

 

[JoeSoup]

Update:

Hey everyone! I promised to update once I got the scan, so here it is!

So, I got my cat-scan done early because my drain stopped pumping anything out for a couple of days. The abscess is still the same size, apparently the drain got plugged up and that caused it to fill with puss again. My drain is going to be flushed with saline every eight hours to make sure it doesn't plug up again. Some of the swelling has gone down so they were able to see that the cause of the abscess was a fistula located where my small intestine meets my large intestine. I'm going to have the drain and be on antibiotics through IV for four more weeks and then they're going to do another cat-scan. If it looks good then my doctor is going to talk to my surgeon about possibly removing that section of my intestines where the fistula is located. They also put me back on NPO so I'll be on TPN for longer as well. Since I'm going to be on these things for a while they're currently working on sending me home and teaching my parents/older siblings how to work everything. Hopefully I'll be out by the end of this week!

 

[ronroush7]

Sending support

 

[Scipio]

I've never been one to be able to take pills easily so to say it was hard adjusting to taking that much medication would be an understatement, especially the giant mesalamine capsules.

I find I can take big pills or multiple pills if I use a fizzy soft drink to wash them down instead of water. Something about the fizziness makes them go down easier. Try it. It might help you too.

 

[my little penguin]

Ds was dx at 7 and is now 13
So we have been at this for a while
Finding the right med combo for you is key
And what works for one doesn't necessarily work for someone else
Ds has used een (formula only ) for 9 weeks a few times instead of steroids
But he drinks his all orally (no tube)
He started using peptamen jr and later switched to neocate jr (elemental formula)

I can say he goes to school has friends has clubs etc...
His arthritis and Sweets Syndrome tend to affect him
More than Crohns st least for the past year or so

It does get better
Oralflo is a cup for helping taking bigger pills
There is also a ccfa sheet on it

Ds hadn't learned to take pills until he was dx and then he had to learn quickly
http://www.ccfa.org/resources/pill-swallowing-techniques.html


http://oralflo.com

Good luck

 

[Tesscorm]

Hi Joe,

Sorry you had the need to find this forum but, glad you did - you'll find lots of support and advice here!

I don't have crohns but my son was diagnosed just before turning 17. As was said above, key is finding the right treatment for you. Some are lucky and find it right away, for others, it might take a bit of trial and error. But, once you find it, you should be good to go! Be patient if it takes a little time... :ghug:

As for our experience... my son was lucky in that his treatments have kept him in clinical remission from beginning ('clinical' remission means no outward symptoms but inflammation is still brewing on the inside). He did EEN (exclusive enteral nutrition) to take him into remission - six weeks of nutritional formula only (was only allowed broth, jello, clear fluids). After that, he continued on EN at half dose and added back a regular diet. When EN wasn`t enough to maintain remission (MREs and labwork continued to show inflammation), he was put on remicade. He`s now been on remicade for approx. 4 years and all has been good - other than his infusions, you wouldn`t know he even has crohns. :thumright:

Since diagnosis, he graduated high school, continued to play competitive hockey, is almost done university, lives on his own/with roommates at school, socializes like all others his age, has even had shoulder surgery from a hockey injury (recovered with no issue)... So, once the appropriate treatment is found for you, you can expect to go on with life.

But, do give yourself time to recover... it takes time for your gut to heal, it may take time to find the right med, you may need to take extra time for rest, etc. Even if it means delaying school plans by a year, no big deal! (FWIW, my son delayed going to university by a year, not due to crohns, and it hasn't had any negative impact on his future plans!) Be patient, remember, now that you are diagnosed, you ARE on the path to recovery... even if you come to some obstacles/setbacks, you are still on the path to recovery.

Some things to consider...

- do check immunity levels for mumps, measles, etc. Once you are on a biologic/immunesuppressant, you cannot have these vaccines. We found out only after my son started remicade that he does not have full immunity to mumps. If we'd known before, he could have had a booster shot. (One consideration, having a booster shot may delay the start of your crohns meds... so the risks/reward will need to be balanced).
- after starting remicade, my son tapered down his supplemental EN formula consumption but continues with some until today (from 1500 calories/day to approx. 250-500 cal today). Nowadays, he drinks 1-2 Boost shakes most days. I do believe that getting the extra nutrition/calories have helped keep his body healthy and helped heal his body (but, he is a picky eater, so it helps fill in the 'gaps' in his diet).
- do follow your GI's advice - do not become complacent in your meds once you feel better.

Stay positive and feel free to come and vent here when necessary! It can be frustrating and tiring, so it's nice to speak with someone else who understands!

Good luck!