Josh's story

[Josh's mum]

Up until xmas 2010 Josh was a normal healthy 14 yr old. What I thought was gastric flu turned into 8 weeks of on and off vomiting and stomach pain getting worse week by week. Early feb 2011 I decided to take Josh to A&E as his stomach pain was unbearable and all he wanted to do was sleep, his weight dropped dramatically too. After 3 weeks in hospital on antibiotics through a drip and a ultrasound scan which showed probable crohn's in his small bowel we were discharged on oral antibiotics to wait for the camera's which could only be done at the local childrens hospital. Luckily an appointment was made for just 4 weeks later. The day before his op he had to take the bowel cleanser medication which made him vomit what looked like coffee grounds. I phoned our GP and was told to ring an ambulance as it was a sign of a burst stomach ulcer. On arrival at A&E we were treated as if we were making it up & sat in the waiting area for 3 hours to see a doctor only to be discharged at 3am and told Josh was just dehydrated. When Josh went into theatre at 9am the same day at the childrens hospital for his cameras he was found to have crohn's and an active bleeding stomach ulcer. The next day he was put on a 8 week polymeric diet and medication Pentasa and Omeprazole. Unfortunately the diet helped little in healing his crohn's and the barium xrays showed it was still chronic so he was put onto Azathioprine 100mg daily in may. Luckily he has had no side effects probably due to splitting his dose and taking each with a large meal. It seems to have had little effect in taking him towards remission and he is still always tired and see through. Josh has arthritis also which will be treated by raising his Azathioprine dosage later this month. Has anyone else had such a prolonged period of a flare up? 5 months plus? It seems to be affecting him mentally too,he seems so angry with life at the moment and I'm struggling to help him deal with his diagnosis. Does anybody have any advice as to how I can help him?

 

[Astra]

Hiya Josh's Mum
and welcome

If you've not already found it, there is a Parents of Kids with IBD forum, there are lots of parents in there to help, advise and support you thro this difficult time.

http://www.crohnsforum.com/forumdisplay.php?f=49

Glad you found us, lots of friends here for you
lotsa luv
Joan xxx

 

[chrisnsteph1022]

My flares tend to last around 6 months. It takes some time to get things under control. I'm surprised they didn't give him prednisone, though. That tends to work quickly. I hope things get better for him soon.

 

[xJillx]

Hi and welcome! I am so sorry your son is going through all of this at such a young age. Being 14 isn't easy as it is.

I agree with Stephanie, usually when people are first diagnosed they are given a course of steroids (usually pred) to quickly get the inflammation under control. Pred is not to be used long term (lots of side effects), but it will address the inflammation within days giving the maintenance drug time to work.

Azathioprine can take several weeks (sometimes 3 months) to fully kick in. How long has Josh been on it now? I sure hope the reason he hasn't found relief yet is it just hasn't taken full effect at this point. I sure hope he starts to feel better soon. Keep us posted!

 

[scottmyster]

HI Mum, welcome to the forum. my flare ups can last up to two to six months like stephanie said. i have crohn's now for 21 years and when mine flares up. they usually put me on predisone and anti-inflammation drugs to calm down the inflammation. i don't know why they didn't put josh on any preds for short term use. at least till the other drug kicked in and done its work. Like jill said i hope he gets well soon and goes in remission for a long time. :rosette2:

 

[dannysmom]

. Has anyone else had such a prolonged period of a flare up? 5 months plus? It seems to be affecting him mentally too,he seems so angry with life at the moment and I'm struggling to help him deal with his diagnosis. Does anybody have any advice as to how I can help him?

Hi and welcome. I hope Josh gets the medication he needs to bring him into remission soon. My son is also 14 but is considered undiagnosed at the current time. He has been sick for about 2.5 years straight now. It stinks! Danny can get 'angry with life' too. We work hard to adjust things to his needs (like home instruction as he is too weak to get to school) and bring some joy and fun everyday somehow. (There are not enough good movies!) Good luck!

 

[Tesscorm]

Hi Josh's mum,

I am sorry to hear of Josh's diagnosis. I have a 17 year boy who was diagnosed in May. Fortunately, he was lucky enough to respond to an enteral diet treatment but I do remember his frustration at being sick prior to diagnosis. Its so very hard, as a parent, to watch your child suffer from an illness! I hope Josh finds a treatment that brings him into remission quickly!

Good luck!

 

[Josh's mum]

Thanks for all your replies it really means a lot knowing we're not alone in how Josh is feeling. I think he hasnt been put onto the steroids just yet because of his gastric ulcer which we wont know if its healed until his next camera's in october. We have tried the home schooling as he's only been to school for 3 weeks out of the last 5 months. We also booked a last minute holiday to sunny Tenerife to try and boost his spirits a few weeks ago whch did him the world of good with plenty of R & R and a boost of pure vitamin D. His health deteriorated as soon as we hit the UK again resulting in his arthritis surfacing in all his joints and strep throat caused by the Azathioprine. Seems some weeks like we go 5 steps forward & 15 back. Danny's Mum- I would be walking the walls by now without a quick diagnosis and treatment for it, luckily we seem to have a wonderful specialist at Manchester Childrens Hospital

 

[DustyKat]

Hi Josh's mum and :welcome:

I'm so sorry to hear about Josh, what a very difficult and heartbreaking time for you both.

I don't know how effective Azathioprine alone is at inducing remission. As others have said it is at least 3 months and up to 6 for it to become fully therapeutic and is usually used in conjunction with Prednisone and often Flagyl or Cipro and well. But as you say, he has an active stomach so the Pred is contraindicated.

My son was diagnosed last December, he did not respond to the meds as it turned out he had other complications, 2 fistula's and abscesses. We had to wait for the inflammation to go from acute to chronic before he had surgery and the 4 months waiting, although necessary, was hard, very hard and seeing Matt continuing to lose weight, become increasingly frustrated and fed up and watch him losing hope was just devastating. I even found it heartbreaking to come home from work and see him, yet again, asleep on the lounge.

I know the gastroscopy isn't until October but when do you see the specialist again?

Dusty. xxx

 

[Josh's mum]

Hi Dusty Thanks for the reply

Josh see's his specialist again 9th November after his camera's but inbetween we speak to his Crohn's nurses if we have any problems and they lease messages of importance. Ap's with his specialist seem to be like gold dust and we've also been put on a study of appointments by phone if Josh seems well or turn up to see him if not........:yrolleyes:

The Azathioprine on its own seems to be taking its time to kick in & I know it can take months but watching him suffer is dreadful, some days I just wish I could take away this horrendous disease. I think we're still in the denial stage and are hoping it will just vanish overnight too. His Azathioprine is being raised by the his rheumatologist later this month once he's spoken to Josh's specialist so hopefully the higher dose should take effect on his crohn's too. It just feels like he's been ill for months with not alot we can do for him and he has more bad days in a week than good 1's.

How did school treat you regarding the Crohn's and the time off it causes. I got told that there was a lot of children in the school with IBS and they had no problem attending...................:ymad:
I thought I was going to burst when the teacher had finished putting me right about just what children with this sort of syndrome could achieve! If not for my husband being there I think I would have punched her. Not only was Josh in the same room listening to the patronising biatch but he was 10kg lighter with a tube down is nose for the Fortisip meals he was having to endure.

Janie xxxx

 

[muppet]

You should bring the teacher's conduct to the attention of an administrator and insist that he/she is educated. There are (obviously) many stages of wellness associated with IBD and there is also an entire spectrum of IBD severity from barely constipated to on death's door. That teacher is a major See You Next Tuesday, if you catch my meaning, and needs to be put right.

 

[Josh's mum]

I agree 100% Muppet, whats more scarier is that I got a call from Josh's
head of year a few weeks ago stating that Josh had been seen with me out & about in the community shopping and that if I didnt ring school by 10am every school day to explain why Josh was not attending I would be taken to court and fined.............I actually was speechless! He's due to start the new school year in a few weeks and he's still no better so probably will be missing a good few days a week through hospital app's and illness. School just does not understand anything about IBD even though I've copied all the information I have about Crohn's for them to read. Some day I'l drop Josh off when he's at his worst so that they can nurse him through it instead then maybe they'l really understand Crohn's.

Janie xxxx :ybatty:

 

[muppet]

Wow. I was under the impression that in the UK people were generally MORE sensitive to disability than in the US. I've never been called out on the carpet for bringing Sarah to the store with me while flaring, that's for sure. There's a big difference between a grocery run and a 7 hour school day.

But then, we don't have public insurance...

What a mess this planet is. Sorry, didn't mean to politicize.

 

[Josh's mum]

I'd say the UK's worse! I'm still fighting to get DLA for Josh to help towards the hospital travel we have to do every week for Ferritin infusions and blood tests or to see the nutritionist and rheumatologist to just name a few. I was told Josh wasnt ill enough to qualify for any help. My husbands wage only stretches so far and I'v had to give up work to look after Josh so moneys pretty tight after we've forked out travel and all the extra's Crohn's needs. All I'v felt is anger since his diagnosis not just at the disease itself but at the simple people who insensitively seem to know better than myself about Josh's illness and how it effects him.

Janie xxxx

 

[muppet]

To be fair, and I'm not downplaying Josh's condition at all, things will get smoother for you as you gain experience with his condition. He'll still be sick (though he will almost certainly attain remission), but everything will seem at least a little (likely a lot) less urgent and dangerous. The cavalier attitude you're encountering is due in large part to this sort of thing seeming routine to the people you're dealing with. This is your child and he's newly diagnosed to boot, so you're going to be out of synch with them because in your mind this is the greatest of all possible emergencies. You're supposed to be in that mode, you're his mom.

It gets better and it gets easier, in turns.

That said you should still advocate aggressively and get all the assistance you can.

 

[muppet]

Also, I've just read your OP in detail again. Is there a reason they haven't started him on a corticosteroid? Do they understand that he has active flaring going on? They must since they put him on an enteral diet, no? Azathioprine is for maintaining a remission, not inducing one.

 

[dannysmom]

Hi Janie. re: some opinions ... I have gotten used to them now and expect them so have become sort of cold and callous to people. I know my son is sick and it does not matter if anybody else in the world accepts this. I will defend and care for Danny. I was also told the are several students with Crohn's disease that attend school. I replied - that is wonderful and hope that can be Danny someday but he is not ready. IBD hits people differently. Even most doctors seem not to understand, which is why I cherish our current GI. We did take him to a psychiatrist early since some doctors labeled Danny as school-phobia. (They do not know my son, the straight-A class clown) The psychiatrist confirmed that Danny is not suffering from any psych-related illness and must have some physical condition. I keep copies of his letter in my file in case any other doctor tries to say that again.

Sorry Josh is losing weight. That is scarey to me. Thankfully Danny has only gained weight and "does not look sick". (another favorite comment)

Sorry for the rant. I understand where you are at. I am trying to get to the place where I no longer get so annoyed but understand that people do generally mean well with their comments. (I am not there yet.)

 

[DustyKat]

How did school treat you regarding the Crohn's and the time off it causes. I got told that there was a lot of children in the school with IBS and they had no problem attending...................

I haven't had an issue with Matt. Sarah was my testing ground but I have to say that the school was on board from the word go. I did go and speak with them and lay it on the line, I took a letter from the doctor and I also took brochures for the school and teachers from the Crohns and Colitis association. Go to your Crohns and Colitis association in the UK and there should be brochures you can download. I don't know the school system there but I can't imagine it would be that different to ours??? They can't discriminate on the grounds of illness or disability and I would imagine they have an obligation to accommodate your needs regarding absences and anything else that needs to be put in place. Go to the website of your Education Department and you should find the information there under students with disabilities and what your rights are.

Even though the school was on board and I never had an issue with them I knew they didn't really appreciate what Sarah was going through. This was a concern I had in her final year of school so I arranged a meeting with the Principal, all her teachers and any other staff involved with her and basically told them what she went through on a daily basis and what I expected of them. This is the report I wrote.


Background
Sarah was diagnosed with Crohn’s disease in July 2006 following surgical intervention. In hindsight the disease had most likely been present for at least two years prior to hospitalisation. During this time other diagnoses had been made including Abdominal Migraine and Pancreatitis.

What Is Crohn’s Disease
Crohn’s disease is one of two types of inflammatory bowel disease (IBD). Any part of the gastrointestinal tract can be affected but the most frequent site for Crohn’s disease is the ileum. This is where Sarah’s is located.

Causes
The cause of Crohn’s disease remains unknown, however, a number of factors are believed to contribute to its formation. These include genetic predisposition, environmental effects, viral or bacterial infections and/or abnormalities of the immune system. The only one we can rule out for Sarah is genetic predisposition as she has no first degree relatives with the disorder.

Post 2006/Remission
The surgical intervention required in July 2006 was a Right Hemicolectomy. This procedure necessitated the removal of 68cm of bowel including the terminal ileum. As a result Sarah has been in remission since this time due the combined effects of the surgery and medication.

Side Effects
The issues that Sarah faces on a daily basis have little to do with her Crohn’s disease, they are a direct result of the surgery. Unfortunately the side effects impact significantly on her day to day functioning and they include:
 Eating – Sarah has to plan her eating around what her activities are for the day. On an average school day Sarah will not eat breakfast or lunch and if she is working in the afternoon will not eat until she has finished work. Occasionally she will have lunch at school.
 Toileting – The reason for the above issues are due to the effect eating has on her need to use the toilet. The removal of the terminal ileum has resulted in frequent loose bowel motions (the terminal ileum is where water and bile salts are reabsorbed back into the body hence the loose bowel motions when it is removed). One of the most disturbing aspects of this is if Sarah is unable to eat until quite late in the day she may be up to the toilet 7 or 8 times during the night. This then leads to the next problem.
 Fatigue – The majority of Sarah’s absences from school are not related to illness but fatigue/tiredness due to much disrupted sleep patterns.
 Anaemia – Sarah is frequently tested for haemaglobin , folic acid and iron store levels. The terminal ileum is also responsible for the absorption of B12 and other iron nutrients. Sarah receives supplementation of these but often sits at the lower end of the normal blood range and at times slips below. This then compounds the problem of fatigue/tiredness.
 Spontaneity – Everything Sarah does in her life has to be planned, she has no spontaneity. This affects her ability to socialise and attend outings, excursions, work and school.

Medications
Sarah takes the following medications on a regular basis:
 Imuran (oral) – This is taken daily. Imuran is an immunosuppressant drug and as the action implies its objective is to suppress the immune system in the hope of keeping diseases like Crohn’s in remission. It is not without its side effects the main one being its ability to affect blood cells which is the reason she is required to have blood taken at least every two months.
Imuran also causes photosensitivity so extended periods of exposure to the sun should be avoided.
 Folic acid (oral) – This is taken daily and is required as Sarah is unable to absorb it due to the removal of the terminal ileum.
 Neocytamin (B12) Injections – These are 3 monthly and again this is required as Sarah is unable to absorb it due to the removal of the terminal ileum.

Other Issues
Crohn’s disease and the effects of the (R) Hemicolectomy are problems Sarah is going to have to deal with for the rest of her life.
Migraines – Sarah also suffers from migraine headaches. These seem to be becoming less frequent and hopefully it will stay that way. Medication for these is taken on a needs be basis.
Sore Eyes – Sarah frequently complains of sore eyes. She consulted with an ophthalmologist as it was felt it could be related to the Crohn’s disease. No problems or defects were found which is good however the problem still persists

Discussion Points
• Sarah presents well thus masking problems that may be present.
• Matthew – do his abilities undermine her confidence?
• Counsellor – would it help?
• Needs sustained guidance and support.

04/06/09

Looking back at the causes, well I now do solidly believe that it is hereditary in our case.

I hope this helps,
Dusty. xxx

 

[dannysmom]

Dusty - Thanks for this letter. I am about to prepare another one for Danny and will copy a lot of this. It is much more personal than the summary I keep updated.

 

[DustyKat]

My pleasure.

When I had the meeting I gave a copy to everyone present and expanded on each heading as I went through it with them. I also had a question and answer session at the end.

Dusty. xxx

 

[Astra]

Hiya Janie

Crohns and Colitis UK have downloads about School and IBD, a guide for teachers.
In loco parentis schools have a duty of care. Josh should be on a risk assessment and reasonable adjustments put in place, this is for insurance purposes amongst other things.
Crohn's is covered by the Disability Discrimination Act, now known as The Equality Act 2010, and for them to not adhere to this, is breaking this law!
They could have a big law suit on their hands if they don't comply!
Good luck with the new school year, hope it all works out for you both
lotsa luv
Joan xxx

 

[Josh's mum]

The letters a brilliant idea thats never crossed my mind before and would save me lots of time explaining to different teachers his needs and medication. Will be getting 1 drawn up asap ready for the start of school..............many thanks!!
Have printed the downloads of too........cheers Joan.

@ muppet..... Josh has an active stomach ulcer that still bleeds when he vomits so steroids of any sort are a no-no until it has cleared up and for quite a while after as they cause stomach ulcers. He has been put onto the Azathioprine to try and stop his flare-up as far as I'm aware thats what the consultants told me. His polymeric diet of 8 weeks did little to help and his xrays and scans came back just the same as before with two benign fistula's growing from his small bowel.
Janie xxxx

 

[muppet]

Ah OK I've learned something. Thanks. What about steroid enemas? No good either?

 

[Josh's mum]

I'v never heard of the enema's................I'l have an ask when I speak to his Consultant next, anythings worth a try!!! Can't see Josh being amused at the prospect though :ylol: His artritis is going to be treated by increasing his Azathioprine dosage too so if there is an enema that he can take instead without the increase......would be miles better than the extra blood tests he'l have to have yet again on increase.

Janie xxxx

 

[muppet]

Aza is systemic so I don't think that reducing his intestinal inflammation would make it more effective on the arthritis, but reducing his general inflammation system-wide is still a good thing. I think Aza is therapeutic for each patient at X dose which has little to do with symptom severity, but that's definitely a question for your doctor.

Enemas aren't so bad. They're embarrassing, but one does what one has to do.

 

[DustyKat]

How long has Josh had Arthritis? If it's within say a 2 or so year period of his Crohns diagnosis has it been ruled out that it is an extra intestinal manifestation of his Crohns?

If his Crohns, aside from his stomach issues, is confined to a smallish area of the small bowel, then perhaps surgery is your best option. My son recently had a resection due to Ileal CD, is Josh's in his ileum?, and the fact that he had fistula's, he also had abscesses. The GI's, Crohns specialist and the Colorectal surgeons he saw all stated that fistula's originating in the ileum are only treatable via surgery. Matt was on Prednisone, Imuran, Flagyl and Augmentin Duo and they didn't do anything as such to improve his condition. I guess they stabilised it but they certainly didn't improve it and we didn't expect them to.

Dusty. xxx

 

[Josh's mum]

Hi Dusty! Josh got diagnosed with the arthritis at the same time as his crohn's up till that time I'd put his joint pain down to growing pains........his specialist hasnt said alot about what sort of arthritis it is he just said it was classic of crohn's with the rashes and swellings and the stiffness. Yeah its in his ileum and mostly confined there. His consultant mentioned in may that surgery might be the best option for Josh so I guess we'l find out in october on his next camera's and xrays. I still dont understand fistula's properly yet, I always thought they came through to the skin but josh has 2 that run to nowhere........beg my pardon at being a lil bit thick!!

Janie xxxx

 

[DustyKat]

Hey Janie,

It sounds like he thinks it may be an extra intestinal manifestation then, which isn't unusual. My daughter also experienced joint pain, particularly her knees, and I put it down to growing pains as well. It's not hard to explain away many of the symptoms of CD is it?

In perianal disease they generally do but higher up in the bowel they often don't. They either remain blind, end in an abscess or go from bowel to bowel or bowel to another organ.

I know surgery is a big step but just so you know...My daughter had emergency surgery 5 years ago, that is how we finally got a diagnosis, and she has been in remission since then. Matt had his surgery in April and is now in remission also. He has now regained 13 kilos, so heavier than when he was diagnosed which was extremely fast due to Sarah, is back playing soccer and I truly can't remember the last time he looked so well.

Aww, you're not think hun, it's early days for you and Josh and there is so much learn. I'm 5 years down the track and I'm still learning!

Dusty. :heart:

 

[Josh's mum]

Josh's joints that mainly are affected are knee's, ankle's, hips, neck and fingers. I'm hoping surgery will be done just so he goes into remission after what seems like months of him being ill. I'v much admiration at how strong you are with two children with crohn's.....I seem to be nervous wreck every time he touches his stomach, goes to the toilet too often etc!
Did Sarah or Matt ever pretend to be well even though they were in pain just to avoid the liquid diet? Josh is convinced that whenever he feels ill and has to see the specialist he'l be put back on it so pretends to feel fit even though he's not...............I must admit I have tasted his Fortisip and couldnt have had 8 a day myself to be honest! xxxx

 

[DustyKat]

Hi Janie,

You're not alone with being a nervous wreck hun, I still am! :lol:

Sarah wasn't on a liquid diet and Matt was only on his for about a week in hospital, but I know what you mean. It can be hard finding the right balance and keeping the lines of communication open. You want and need them to be able to tell what is going on but not think that in doing so will always end up in a trip the doc or more tests. It's so hard not to be like a cat on a hot tin roof when things are so new unfamiliar, it's normal and natural to be like that Janie, he is your baby and it kills you to see him suffering.

BUT...what happens over time is you develop...the stealth look! I spend a lot of my time looking at my kids without really looking at them...:shifty-t:...you can pick a lot up by silent observation and in doing so you don't drive them crazy by asking every 5 minutes...are you okay? :wink:

Dusty. :heart: