Please Help!...It's Started Again!!

[Ellowyne]

Hello, some of you may remeber me posting here. My son is 19 and was diagnosed with Crohns in January this year. He was diagnosed whilst in hospital where he was very ill...His CRP was 376 on admission. To cut a long story short, he was kept in for 11 days, had a colonoscopy which diagnosed Crohns and was started on Pentassa 4000mg aday. Since coming home he has bee quite well. He has never missed his Pentass, takes Omega 4 daily and also Actimel. We have kept him on a good fibre diet also. However, over the past week or so his symptoms seem to be reappearing...His bowels are becoming more frequent and soft again, but no blood so far this time.

He was quite distressed this evening as he has had an accident in his underwear..He seems more full of wind and is tired again...Also, his toilets are quite smelly again. I am unsure of how long I should leave things until I contact his Dr?...Also, since being discharged he still has NOT recieved a follow up appointment at the hospital!!...I have phoned many times but they tell me thay have No space in the clinics!!...Should I start a Low Residue diet for him?....I just don't want him to end up in Hospital again, please god he doesn't!!...Please someone help me know what I should do befor ehtings get any worse.

Warm regards, Lolly x

 

[Crohn's 35]

Hi there, I am so sorry your son is getting worse. Smelly bm usually mean his crohns is active. You dont have to have blood to be active, I never have blood. I dont know what country you are in but I will guess US. He should be on a residue diet or bland anyways, just my thoughts. Unsweetened apple sauce and bananas help slow down the D. Stay away from fibre for a bit. If he gets bad pains then he should be in the hospital. Pentasa is for milder stages, it could be progressing. He needs rest and stress free for a spell. Sorry I cant help much but if he starts to bleed go to the hospital. NO one likes to be there but it is the best place to be...been there myself many times. hang in there, keep us posted.

 

[Crohn's Mom]

Hi there..I'm sorry your son is flaring again
I agree with Pen and you should start him on a low residue diet for sure, and stay away from the fiber right now...and also try and make sure he is keeping himself very hydrated ! it's very very important right now, especially if he were to need to return to the hospital.

If you are in the US can you take him to the local ER and have him checked out ? They may be able to administer iv prednisone, or anti biotics or both...run lab work, they could do a CT scan and see if he is in immediate danger, etc. If nothing else they could give you peace of mind even if only long enough until you can get into the clinic.

Hang in there and I hope he feels better quickly! Let us know where you live if you don't mind...there may be someone in your area on here that could point you in a better direction

:hug::hang::hug:

 

[Ellowyne]

Where to turn next!!!

Thank you for your kind messages. We live in the UK...I have contacted the Hospital and the GP today...So, it seems that, the Hospital say he should of been seen before now, but the hospital ward did NOT forward his follow up appointment through!!!!!...The Consultant can not see him straight away...The GP says 'He does not know enough about Crohns and synsequent medication that Danni should be put on!!!!!!' What's that all about?...So, I phoned the Hospital again, they asaid that Danni should be looked after by his GP until he receives an appointment!!!...This is just not good enough, he is being pushed from pillow to post!!!!....I asked the GP to arrange a blood test, just to see if his CRP is up, he said there is no point...'His CRP will be up anyway!' Well, yes, but surely to varying degrees!!!

Just at a loss!...I guess we will just have to wait until he deteriates further then!!!...What can I possibly do now? I will be starting Low Residue diet today, I just do not know where to turn next!

Please any advice?

Thank you....Lolly x

 

[beth]

His GP should be able to give him an interim course of pred to catch the flare before it gets too worse. Sounds like the GP is afraid of treading on a consultants toes, or just being plain awkward.
Try contacting PALS if it still exists?

 

[Misty-Eyed]

Hi there,

I agree with Beth about your GP. It's not unusual for hospitals to be a pain in the arse when it comes to making appointments. I'm frequently emailing my consultant's secretary to try and arrange appointments that I've been promised and nothing has been done about it.

Is there any IBD nurses at the hospital he goes to? I always contact them if I am feeling unwell. They talk me through what i'm experiencing, offer me advise and if they can't help, they make me an appointment with my consultant asap.

Failing that, if you don't hear anything soon, I'd take him to A&E. It forces the hospital to actually listen to you and do something about it.

 

[Laura_123]

Try and get an appointment..i always think its better to be safe than sorry. even if i get slight symptoms im there straight away.

when my bowels start again i eat plain chicken with a jacket potato and butter for dinner and tea. and toast for breakfast. i stay away from fizzy drinks and only drink water

its very boring but helps alot
x

 

[Laura_123]

Thank you for your kind messages. We live in the UK...I have contacted the Hospital and the GP today...So, it seems that, the Hospital say he should of been seen before now, but the hospital ward did NOT forward his follow up appointment through!!!!!...The Consultant can not see him straight away...The GP says 'He does not know enough about Crohns and synsequent medication that Danni should be put on!!!!!!' What's that all about?...So, I phoned the Hospital again, they asaid that Danni should be looked after by his GP until he receives an appointment!!!...This is just not good enough, he is being pushed from pillow to post!!!!....I asked the GP to arrange a blood test, just to see if his CRP is up, he said there is no point...'His CRP will be up anyway!' Well, yes, but surely to varying degrees!!!

Just at a loss!...I guess we will just have to wait until he deteriates further then!!!...What can I possibly do now? I will be starting Low Residue diet today, I just do not know where to turn next!

Please any advice?

Thank you....Lolly x

ask to speak to the practice manager at the gp's. they should sort it for you because they will not want the reputation of the doctors to be put in mud
x

 

[Ellowyne]

Thank you for all your kind replies.

It seems we have progress!...After much complaining to the Consultants secretary, she said she would talk to the consultant about Danni. He has told her to 'Expediate' Danni's appointment!!...He was annoyed that he had not been seen in clinic weeks ago!!....Hopefully, I should hear in a week or so with an apointment date. In the meantime, should he deteritae, the consultant has said to contact the GP, oir, if it gets much worse to bring Danni into hospital. I have started Danni on the Low Residue diet and will see how things go oday and tommorow.

Thank you again for all your messages, I really do appretiate the support and help.

Hugs, Lolly x

 

[IAmTheWalrus]

I'm surprised that they just kept him on Pentasa . . . . . .

When I was diagnosed in January of 09, I was put on IV Hydrocortisone for 2 weeks along with Pentasa, and then discharged with 30mg of Oral Prednisone and Pentasa.

I'm from Ireland and our health board is very similar to the UK's. Really surprised they haven't given him Pred. Even when I'm in need of medication my consultant told me that my GP can prescribe me steroids or adjust my medication dosage as he see's fit.

The only thing my GP cannot do is start me on a new drug.

 

[Ellowyne]

Please help!...Just a nightmare!

I thought things were looking up, but today...More confusion over Danni's appointment!! Now saying that, although Consultant says he needs to be seen urgently...there are NO appointmnets available for him?...Now having to see about seeing him privately and paying £150!!...GP no use, asked ME what medication Crohns sufferes have?...This is like a bloody nightmare!!!! I told him that 'I am not medically trained as a GP...But, through reserch I know mostly that flares are treated with Pred' Ok, he said I'll get a prescription doen for that!!...Danni seems worse today, stools watery, opening bowels 6/8 times a dy, no pain or blood as yet. Now, now it is left in my hands to decide if I should go ahead and give him the Pred?...The fact that the GP asked my advice, instills me with no confidence at all, especially reading the horror stories here about Pred and the side affects...What should I do?...Maybe wait until tommorow to see if I can get advice from Consultant? Just so unsure what to do for my son...Please help?

Is the NHS Servises generally like this?...Or is it just the Isle Of Wight?