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My story - 16 years old & diagnosed with Crohns.

I'm a 16 year old with a history of recurrent shin lesions with low grade fever and tachycardia. I had 2 short stay admissions (29/1/11 & 4/2/11) at the emergency department for the above, which was treated as cellulitis and I was put on IV antibiotics. Just recently I was admitted a 3rd time due to reoccurring shin lesions in opposite leg, lower abdominal pain and loose bowel motions. With this third admission, I spent a total 17 days in hospital, 16 of those were spent on an IV drip. On the 13th day I underwent a endoscopy and colonoscopy which confirmed my diagnosis with Crohns disease. I was definitely an 'interesting' case for the Doctors, so here's my story. (Sorry if it’s poorly written, it’s quite late where I am!)

It all started late January this year. I'd just come home from a relaxing 12 day cruise around New Zealand. As I was leaving to fly home, I kicked my shin on a hard-plastic chair. It was extremely painful at the time, but I'd soon forgotten about it.

3-4 days later an egg-shaped lump appeared on my right shin. 1 week after the knock, redness started to appear. Over the next few days, it became hot to touch and both redness and swelling increased. I saw my GP, who took a quick glance and diagnosed it as an infection, and I was sent home on antibiotics.

The next day my leg had gotten worse, to the point where I was unable to even walk on it. At this stage, both my parents insisted I went to the hospital and had it looked at. The doctor at Emergency diagnosed it as celulitis (infection in the skin) and I was started on some IV antibiotics for the next 24 hours. I was then sent home on Staphlex 250mg. For about the next 2 days the lesion had reduced in both redness and in size. Though soon after it flared up again and had now spread to the point where it covered almost my entire shin.

1 week after my previous admission, I returned to Emergency. I was put on the IV antibiotics again, for about 40 hours. This time they alternated between the IV and oral antibiotic. I had an allergic reaction to one of them (Clindamycin). The lesion improve significantly and I was sent home with 2 weeks worth of Staphlex 500mg. I had no problems for several weeks now.

Then a month later I was at work, and in a matter of hours a lesion appeared on the OPPOSITE left shin with full-on redness and swelling. At this same time I'd also had diarrhea (thought this may have been because of the antibiotics), slight chest pain, cramping in my abdomen on the lower right hand side, and pain around the hip. I actually thought I might have had appendicitis.

So I returned to the Emergency department for a 3rd time. They immediately started me on the antibiotics, and because of the unusual reoccurrence in the opposite leg and my other symptoms they looked into everything a lot further. During my first week in hospital I felt like I'd had every test imaginable. (multiple x-rays, ultrasounds, cat scans etc.) You name it, I was tested for it.

A lot of stuffed happened during the 17 days of being hospital, that even I'm hard pressed remembering. So trying not to blab on too much more, I’ll simply type out my discharge summary.

- admitted to hospital on 5/3/11
- commenced on IV flucloxacillin
- investigated by medical team (ANA, dsDNA, ENA, ANCA, B12, folate, iron studies, septic workup)
- USS abdomen (complex heterogenous collection in RIF may represent thickened wall or inflamed terminal ileum/caecum)
- changed IV antibiotics therapy (ampicillin, gentamicin metronidazole
- DVT prophlyaxis given as impatient
- V/Q scan performed 8/3/11 (no evidence of PE)
- CT abdomen (complex heterogenous lesion in caecum/ascending colon with lymphadenopathy; lack of terminal ileum involvement)
- surgical team involvement
- gastroenterology involement to lx ?Crohn’s
- echocardiogram performed on 10/3/11 (no evidence of infective endocarditis)
- colonoscopy and endoscopy performed on 17/3/11 (likely Crohns, see biopsy report)
- dermatology review 17/3/11 (likely erythma nodosum)
- commenced on oral prednisolone 40mg and 6-MP 50mg
- Fe infusion given on 21/3/11
- Pt subsequently discharged home with d/c medications, medical certificate and follow-up arrangements in place. (40mg 1/52, 30mg 1/52, 20mg 4/52, then reduce by 2.5mg each 1/52)

Whilst in hospital I was also diagnosed with AIS scoliosis. I didn’t find out in the most pleasant way either. The lady who had taken my chest x-ray casually said to me “So your being treated for your scoliosis” and I said “Urgh…what scoliosis?!” Then she had a bit of shocked look on her face and told me to mention it to the doctors next time I saw them. Mind you, this was at 11 o’clock at night..so of course, I freaked out! Both the doctors and my parents were really unimpressed with the radiographer and the way she approached me.

I'm back at school now and feeling fine. I found the initial first week after being discharged the hardest, as it was a huge shock for me. I wouldn't be able to talk to anyone about it without bursting into tears (not sure if the preds were partly to blame for this). Other than that, I'm responding to my medication really well and haven't experienced any problems/symptoms since being in hospital.

Anyway, I hope I didn't bore you with my story too much and I look forward to talking to you all in the near future. I think I'll definitely benefit from this forum a lot, especially during those rough stages.
 
I'm also extremely thankful and fortunate to be under the wing of the leading Gastroenterologist at the hospital, who to me seems very knowledgeable and passionate about IBD.
 
Hi
Glad to hear you are feeling better and havent felt any symptoms since being discharged from the hospital. I noticed you are training for dental assistant... having the diagnosis you have will likely help you to be empathic in your work as Crohns affects dental health. I know a lot of people on here have mentioned about their gums and mouth sores..including myself and it is difficult to get to the dentist because I know it will hurt!
You have been through a lot and I am glad you like your doctor! That helps a lot!

Welcome to the forum and have a look around. There are a lot of people on here with a wealth of experience and can help through tough times.
 
Hi
Glad to hear you are feeling better and havent felt any symptoms since being discharged from the hospital. I noticed you are training for dental assistant... having the diagnosis you have will likely help you to be empathic in your work as Crohns affects dental health. I know a lot of people on here have mentioned about their gums and mouth sores..including myself and it is difficult to get to the dentist because I know it will hurt!
You have been through a lot and I am glad you like your doctor! That helps a lot!

Welcome to the forum and have a look around. There are a lot of people on here with a wealth of experience and can help through tough times.
Yes, I've been working as a trainee dental assistant for a year and a half now. I'd never heard of Crohns until now, so I'm yet to find out the details on how it affects dental health. I'll have to ask my boss about it when I'm back at work.

Thanks for the warm welcome, I shall see you around!
 

ameslouise

Moderator
Hi and welcome!

Wow, you have been thru a lot for such a young'un! Thanks for your very detailed history - are you really just 16 years old???

Glad you are feeling fine now and hope the 6MP continues to work for you! Good luck with your studies.

-Amy
 
Hi and welcome!

Wow, you have been thru a lot for such a young'un! Thanks for your very detailed history - are you really just 16 years old???

Glad you are feeling fine now and hope the 6MP continues to work for you! Good luck with your studies.

-Amy
Yes, I'd never been in hospital before so It was as a bit scary. The initial first week of testing was probably the scariest, and I had a terrible experience with the bowel prep. *shivers*

Yep, 16 going onto 17 this year. :)

Thank you for the welcome, and I hope it continues to work as well!
 
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xJillx

Your Story Forum Monitor
I am with Amy - I am in shock that you are only 16 years old! You write so well (I used to teach English, so I have some experience)!!

I am so sorry you have been through so much lately, but I am pleased you have such a good doctor who was able to diagnosis you quickly and begin the appropriate treatment. I hope you continue to feel better and better!

And, remember, even if you start to feel amazing, don't forget to take your meds! I have learned so much from the forum, but one of the most important being to not make the mistake of stopping treatment. Nothing good comes of it.

Good luck and I look forward to seeing you around!
 

Crohn's 35

Inactive Account
Hey you finally made it!! :welcome:! I was wondering have you ever been tested with Pyoderma Gangreosum. Most times is starts out in the shins, or foot. I had a mild case of it but there are some that battle it continuously. It is also Crohns related and can happen at any time.

You sure have alot of knowledge of the numbers in this disease. Hope you get some relief and join in the forum, we have others here from your country too! Glad you found your way on here. :smile:
 
hey :)
Sorry to hear about your stay in hospital - I'm 16 too and was recently in for 13 days, not nice. But it's good to hear you've been symptom free since discharge and hopefully the meds will continue to work well. :)

x
 
I am with Amy - I am in shock that you are only 16 years old! You write so well (I used to teach English, so I have some experience)!!

I am so sorry you have been through so much lately, but I am pleased you have such a good doctor who was able to diagnosis you quickly and begin the appropriate treatment. I hope you continue to feel better and better!

And, remember, even if you start to feel amazing, don't forget to take your meds! I have learned so much from the forum, but one of the most important being to not make the mistake of stopping treatment. Nothing good comes of it.

Good luck and I look forward to seeing you around!
Oh really? Haha! I thought my story was poorly written. *blushes* I suppose that's not a bad thing then. :)

It was a lot to go through in such a short space of time, but I'm thankful I finally have a diagnosis (especially for those annoying shin lesions) and am being treated for it.

Thanks for the welcome! I shall see you around. :)
 
Hey you finally made it!! :welcome:! I was wondering have you ever been tested with Pyoderma Gangreosum. Most times is starts out in the shins, or foot. I had a mild case of it but there are some that battle it continuously. It is also Crohns related and can happen at any time.

You sure have alot of knowledge of the numbers in this disease. Hope you get some relief and join in the forum, we have others here from your country too! Glad you found your way on here. :smile:
Yes, I finally worked out how I was going to retell my story. After my dermatology review, the lesions on my leg have been diagnosed as Erythma Nodosum. They did look into other possible things though, but that was what came back.

Thank you for the warm hello. :)
 
hey :)
Sorry to hear about your stay in hospital - I'm 16 too and was recently in for 13 days, not nice. But it's good to hear you've been symptom free since discharge and hopefully the meds will continue to work well. :)

x
It's awful, isn't it!? It was difficult getting back into the swing of things at school, especially since I'd missed out on 3 weeks and I'm in year 12 (final year.) I was however very pleased when they gave me some special consideration and decided to rule out some of my assessment and exams for the term, so I'm not completely stressed out.

Yes, I hope so too. Thanks for the friendly welcome.
 
Just thought I would write an update as it's almost been 5 months since my diagnosis of Crohn's Colitis.

About 2 months ago I'd come off Prednisolone, however the Erythema Nodosum decided to come back and my doctor felt that the best option was for me to go back on Prednisolone, but at a much lower dose. (I had a bit of trouble after the last batch of Prednisolone to the point where I was told I had Psychoses! It really did mess with my head. Thankfully they got me off the steroids pretty quick and I was back to my normal self again!) After starting Prednisolone a second time round, my Erythema had completely cleared up in less than 2 days! I'm still weening off the Prednisolone now though, and am down to 3mg.

I also should mention the painful lump near my anus which I discovered last week, that to me looks like it's near the perineum (I think that's the area..). One of the doctors recently had a look at it and was convinced it wasn't a Perianal Abscess (or something along those lines) but said I should still have a Pelvic MRI just to be sure. I thought it was especially painful after a bowel motion, and it was after a bowel motion that I discovered the pea/small marble lump. Last night as I was trying to go to sleep, I felt shooting pains down there which almost felt like mini electric currents. :/ I guess there are a lot of nerves around the area. This morning I also recognized some discharge, however it was quite thick looking which is a bit unusual. I'm wondering if has something to do with the lump? Anyway, I'll have to wait and see what happens after I have the MRI. I am hoping it's not an Abscess or anything bad!
 
Hello
I can empathise. I started with problems when I was 13 and eventually diagnosed with Crohns when i was 15 (I am 51 now). I too had erythema nodosum on both shins when about 16 years old and its bloody painful! I think it might be related to the TB/MAP bug which may have a role in causing Crohn's. I was put on steroids without much in the way of review until I too developed a 'steroid psychosis' thought my bed was infested with spiders! I was about 17 at the time and have been on and off steroids for years with no further psychological problems. Only had 1 episode of erythema nodosum - weird disease innit!
Very best wishes
 
Just another small update. :)

About 2-3 weeks ago I had a perianal abscess drained, and turns out there is a fistula. The Gastro team have decided to start me on Infliximab soon to help with that.

After 6 months of waiting I finally got to see an Orthopaedic surgeon about my scoliosis. I was presented with two options; to leave it with the chance of it becoming more severe, or have surgery (placement of 2 metal rods) to completely correct it. I've decided that the surgery is the best option. :) I won't be rushing into anything though until the Gastro team is satisfied that my Crohn's is under control.

At the moment I'm trying to get as much study done for block exams, whilst juggling the feeling of nausea and total lack of appetite.
 
I like your name. It's really cute! I hate that you've had to endure such a difficult time at such a young age. Crohn's at any age is difficult, but even more so when you're a kid, a teenager, or a teen on the cusp of adulthood. I was 27 when diagnosed and it utter hell.

Now, about Prednisone....it can make you irritable, weepy (essentially your emotions feel like you're on a roller coaster), give you nightsweats, feelings of heightened energy levels and later you feel like you're crashing and extremely tired. It can also make you retain water (so you need to watch your salt intake) and it can also make you feel as if you're constantly hungry.

Prednisone has some great uses, but the side effects can be hard to deal with. I would ask next time to see if your doctor could place you on Budesonide. This drug doesn't dissolve in your stomach; it actually breaks down in your terminal ileum. It also doesn't have to be tapered like Prednisone (due to the fact that Prednisone affects your body's own steroid production and could cause your adrenal gland to go into shock if the the steroid is suddenly stopped or tapered too quickly.

I wish you well with everything and I hope that your Crohn's is under control. Have a great day! :)
 
I like your name. It's really cute! I hate that you've had to endure such a difficult time at such a young age. Crohn's at any age is difficult, but even more so when you're a kid, a teenager, or a teen on the cusp of adulthood. I was 27 when diagnosed and it utter hell.

Now, about Prednisone....it can make you irritable, weepy (essentially your emotions feel like you're on a roller coaster), give you nightsweats, feelings of heightened energy levels and later you feel like you're crashing and extremely tired. It can also make you retain water (so you need to watch your salt intake) and it can also make you feel as if you're constantly hungry.

Prednisone has some great uses, but the side effects can be hard to deal with. I would ask next time to see if your doctor could place you on Budesonide. This drug doesn't dissolve in your stomach; it actually breaks down in your terminal ileum. It also doesn't have to be tapered like Prednisone (due to the fact that Prednisone affects your body's own steroid production and could cause your adrenal gland to go into shock if the the steroid is suddenly stopped or tapered too quickly.

I wish you well with everything and I hope that your Crohn's is under control. Have a great day! :)
Haha, thank you. The name/phrase is actually used by the Celebrity Holly Maddison, but I've decided to use it too. :tongue:

Yes, it's definitely difficult and the suddenness of it all makes it even harder. After I was diagnosed my parents were more upset than I was. I didn't really realise what living with an autoimmune disease would be like, and so it didn't really phase me at the time, possibly because I still felt relatively normal and didn't know any different. It's been hard dealing with this and my final year of school.

Thanks for the advice on the Prednisolone, but I am already off it and have finished that second round of them. (Tapered from 15, 10, 5, 4, 3, 2, 1 over a course of 7 weeks.)
 
Glad to hear you're done with the Prednisone! :) I wish you well and many great days with your health! You're so right about living with an autoimmune disorder being difficult. I was diagnosed in 2003 but didn't fully realize what living with Crohn's actually meant. It can affect everything, and I mean everything. I pray that you have many wonderful days and that the bad ones don't pull you down. If they do....you know where to come. :)

Thanks for sharing your story with us. We all need someone to talk to, and I've already noticed that this site is wonderful in all aspects of that.
 
Glad to hear you're done with the Prednisone! :) I wish you well and many great days with your health! You're so right about living with an autoimmune disorder being difficult. I was diagnosed in 2003 but didn't fully realize what living with Crohn's actually meant. It can affect everything, and I mean everything. I pray that you have many wonderful days and that the bad ones don't pull you down. If they do....you know where to come. :)

Thanks for sharing your story with us. We all need someone to talk to, and I've already noticed that this site is wonderful in all aspects of that.
Thank you. I like the forum, because we all have something in common. It's difficult finding support at school, because none of my friends even know what I have. It was my decision not to tell them, but they know I'm in and out of hospital and they've seen the Erythema Nodosum. I think part of the problem is that I look normal from the outside and people seem to forget that I'm not feeling okay.
 
Just a bit of an update!

The peri-anal abscess I had drained back in August was on-and-off opening and closing for awhile, but over the last few months it seemed to remain closed, though it did look a bit weepy. Anyway, started to feel a small lump in that same area where the "closed" abscess was. The surgeon decided that if the Infliximab was going to have an impact on the healing of the abscess drainage/fistula, it would have done so by now (3rd infusion). Sooo, just last week I had surgery for the placement of a seton. I can't feel it at all, and I haven't even had a look at it yet, but I'm not sure if I will anyway.

Other then that, I think that's it. Ohh, and I graduated from High School last month and got my results on the weekend. :)
 
Just a bit of an update!

The peri-anal abscess I had drained back in August was on-and-off opening and closing for awhile, but over the last few months it seemed to remain closed, though it did look a bit weepy. Anyway, started to feel a small lump in that same area where the "closed" abscess was. The surgeon decided that if the Infliximab was going to have an impact on the healing of the abscess drainage/fistula, it would have done so by now (3rd infusion). Sooo, just last week I had surgery for the placement of a seton. I can't feel it at all, and I haven't even had a look at it yet, but I'm not sure if I will anyway.

Other then that, I think that's it. Ohh, and I graduated from High School last month and got my results on the weekend. :)
It sucks, I have had 3 surgeries for this crap, first was with some red ties which left my abscess to heal, others were just incisions. I get these all the time and try to control them with antibiotics and "hot towels". I'm not even 14 yet and deal with this crap. This is my most important year, because I'm 7th grade...I don't want to fail :depressed:
 
Best of luck to you with going through all of this at such a young age. You're a fighter. And congrats on graduating high school! Is college in your future?
 
It sucks, I have had 3 surgeries for this crap, first was with some red ties which left my abscess to heal, others were just incisions. I get these all the time and try to control them with antibiotics and "hot towels". I'm not even 14 yet and deal with this crap. This is my most important year, because I'm 7th grade...I don't want to fail :depressed:
Sorry to hear about your troubles! Managing Crohn's is very hard with school, especially when things like abscesses pop up unexpectedly! I had 40 whole or partial days off school this year, and this is in year 12, my FINAL FINAL year! Somehow I managed to keep my grades up, though I know I could have done better if my year hadn't been so interrupted. Try not to worry and keep focused on your studies, though year 7 is nothing to worry about and a walk in the park compared to year 12. Good luck!
 
Best of luck to you with going through all of this at such a young age. You're a fighter. And congrats on graduating high school! Is college in your future?
Thank you! I never considered myself a "fighter", I've just got no other option but to deal with it really. Having said that, yes it's hard to deal with at times, especially surgery in areas I would much rather not have any scarring or problems in. ): Thank you, I plan to go to University next year :)
 
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