Give us a break

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positivemum

Joined
Mar 7, 2013
Messages
225
This illness is such a nightmare. Please could it give us a break just for a week??? Ben was doing well last week now we have bleeding again and fatigue and exhaustion form going to the toilet a sore mouth... do I need to go on!

I am tired of coping and feel the illness is ruling us instead of us being in charge. You sort one thing and another comes along or the original thing happens again 2 weeks later.

We have lives to lead and we are not managing it.

Sorry to rant - just better on here than lose it with family or Ben. It's not his fault.
 
Sorry to hear things are not going well. I hope this is just a short flare and he starts to feel better again asap!
 
Snap here PositiveMum waiting on IBD nurse for instructions. J not in school again today. Hate the not knowing and the not being able to plan.

You rant away, that's why we are all here, I've done my fair share of ranting this past week!!!!!

Hugs.

Xxx
 
So sorry Ben and you are having such a rough time right now. :(

Is he on maintenance meds? If yes, I hope he begins to seen consistent improvement very soon! If meds are not working or no maintenance meds, will you be seeing his GI soon to work out a new plan?

In either case, I hope Ben will start to feel better soon! :ghug:

Rant away... we all need to vent some frustration at times! :hug:
 
thinking of you both and hope things get better soon.
This disease has so many symptoms, and it is different for everyone.

I hope you are able to find the meds that help him to get into remission soon.

This is the place to vent all you need to.

It sounds like he is flaring again. How long has he been on his current meds?

The cortifoam helps with sigmoid bleeding and below, let me know if that might be an option and you have questions. It is a must for our daughters treatment right now.
 
Thank you so much for your replies; it really helps to have this forum. He is on meds: azathiprine 100mg and pentasa along with corsodyl mouthwash. He also has mezalazine suppositories. He can't use the predfoam so he has suppositories but he struggles to use them consistently. he meant to do a 2 week course and then cut down to 3 a week to get things under control. However, he can't always insert them and he has to time it right as he can't go to the toilet for an hour after. He has to use germolene first to numb the area a little so it all takes hours and to be honest where in the day is there enough time?

He is now going to have to take an iron supplement but can't swallow big tablets so we have found spatone water but it tastes foul. At the weekend i also need to get a VIT D supplement he can take. Being poorly is a full time job!

I have come in from work and he feels a little better now but has now missed 2 days out of 4 this week in school. He is Year 9 so the next 4 years are so important.

Thanks again for listening and I hope your children are all doing ok
 
My son basically failed 10th grade due to all of his absences, but if he goes to summer school, he can catch up, or he can graduate a year late. It really doesn't matter to me.
My oldest didn't graduate high school, but she now has two degrees and earns a VERY good living. (She also has Crohn's).
 
It is so hard not to feel the way are when caught up in a life of active Crohn's. It is like a never ending roller coaster ride and the dips and peaks are extreme and it saps the life out of you. :ghug:

I hear you Mum...my daughter was diagnosed when she was in Year 9 and missed a lot of school that year but things did eventually settle down and all worked out in the end. :) I hope it does for your lad too, bless him. :heart:

Above all else no apologies are necessary, you are among friends that understand. :hug:

Dusty. xxx
 
I understand the feeling. We are just [ hopefully ] coming through the other side of a very long flare. I understand the helplessness of it all and feeling the illness is in control. We have gone many months in not being able to do anything at weekends because Josh was just too exhausted to do anything.

With the Spatone, it can be taken with orange juice, that does make it taste better. I think it is recommended to do it this way as the iron is absorbed better with orange juice.
 
He has had the spatone with orange juice and tolerated it then he didnt feel well in general so he stopped it. So hard at 14. He will take his azathiprine regularly but I struggle to convince him with other stuff.

Any tips gratefully received for poorly teenagers with attitude!

He is an intelligent boy who knows it all helps etc but I can't pin him down.

Don't want to argue about it
 
You so have to choose your battles during the teenage years ay?

I had similar issues with daughter, it was no point telling her she had do it as that only elicited the opposite response! :eek2: I found the only chance I had was to catch her in a 'good moment' and explain to her why it was important in the bigger picture to take all the meds and supplements. I gave her information and showed her the blood results. I told her that I can't make her take them but since her health was the important thing I would be disappointed that she didn't. Ugh, it can just be so damned hard at times!

My son is the opposite, if there is a good reason he just takes them. I just hope I always have a good reason! :lol:

Good luck Mum, I feel your pain. :hang:

Dusty. xxx
 
My 16 yr old has been a nightmare. Won't do her Sitz baths. Eats bad stuff behind my back. Has bad perianal disease and won't take antibiotics when she needs them. Her older sister has Crohns and counsels her also. I try to turn some responsibility back on her, but she seems to regress more each day. Exasperating. Feel for all parents.
 
positivemum, I totally understand the feeling of helplessness. You are so right, at his age you CAN'T pin him down. Even Devynn who is 11 (12 in Aug) is a nightmare sometimes when it comes to taking meds. Our family dr wants her to start probiotics again (trial) and she said "I am NOT taking more pills and I am NOT drinking a disgusting yogurt drink, and you CAN'T make me!" I have told her that she IS starting it weather she likes it or not, and its her choice weather we choose a pill or drink (at this point). She is still deciding. I've told her we are starting them at the beginning of the week so she either chooses, or I choose. But in reality if she refuses, I am in the same boat. You should have seen her doing the bowel prep at the hospital when she was only 8. THAT was like something in a horror movie! ((((hugs)))) I hope he starts feeling better real soon. You never have to appologize for venting here (((hugs))))
 
Hugs
One thing we have tried in order to convince my oldest ( non crohns)to take his medsmeds. I explain "doc xyz prescribed these for you to help you.
If you feel you "know" better because we know at age ( fill in the blank here) . You definitely know more and went to medical school right. ( insert child eye roll)
Then you need to call the office of doc and explain to them why you know more and are not going to take what they thought was best to help you."

I am sure it will stop as they get older but neither child wants to have to explain to the docs . Plus some of the specialist we have seen for years so the kids really trust them. I think that helps alot .

We also give some form of control . Since that really what they want.
They don't get to pick what meds they take but can determine the order or the route ( if possible).

We also try to include them other choices ( non medical ) as well.

Hugs
 
Thank you so much everyone for your support. My breaking point broke today and we have had lots of tears here today. However, he has now taken the Vit d and is going to do a suppository tomorrow (we'll see). I have hit the wine when I am trying to diet - not good- but I am only human. We visit Florida in 5 weeks and I CANNOT wait! Just be good to get away form everyday. My teaching job is stressful as I teach Y6 here in England - age 10-11 and they have exams in 3 weeks!!!!

Bubbly - my son is in the same year as yours - just chosen GCSE options
 
PositiveMum - I so understand what you are talking about! Because Alex has been in remission, and the memory of the 6 week hospital stay is fading - except the part when Washington National baseball players came in and played cards with him - I think he forgets his disease is chronic and he *is* sick (even if he doesn't feel like it). Hence, he skips taking his meds. After trying everything to keep him on track, I'm not opposed to crying! I have sat him down and told him his life story - from the time I decided to have children... I've told him that if ANYONE tried to hurt him, I would take action against that person - EVEN IF the "bad" guy is him. NOBODY gets to hurt my kids... Then I share stories of some of the kids who are more sick than he is... and how blessed he is for all he has... It's a tough conversation - but I got my best results from it.

Good luck!!
 
GCSE options, what a mind field! We are still waiting for a meeting with the school this week to discuss dropping some so he can concentrate on the core subjects and also receive learning support. He will hopefully drop a language then take maths, english, sciences, art and drama - the last two while not particularly academic he enjoys and find them a release, he is supposed to choose a language; french, german or spanish followed by another subject; history, geography, media.... Just got to get the school to agree, at the end of the day we are paying school fees, even when he hasnt been there so i think they need to support and help us and Callum along this very tricky field.

Hope he feels better soon and enjoy a glass or two of wine, sometimes it is needed and deserved x
 
Very happy! The hospital opened in October and we started seeing the GI there in December. Such a difference from the hospital we previously used in Tampa.
 
Positive mum,
You are soo right teenagers (urrgh). MLP had some good advice. I might try some of her suggestions. Just sending you some hugs. We also live in Florida. 2.5 hours from Orlando. I hope you guys have a great time.
 
Bubbly said:
GCSE options, what a mind field! We are still waiting for a meeting with the school this week to discuss dropping some so he can concentrate on the core subjects and also receive learning support. He will hopefully drop a language then take maths, english, sciences, art and drama - the last two while not particularly academic he enjoys and find them a release, he is supposed to choose a language; french, german or spanish followed by another subject; history, geography, media.... Just got to get the school to agree, at the end of the day we are paying school fees, even when he hasnt been there so i think they need to support and help us and Callum along this very tricky field.

Hope he feels better soon and enjoy a glass or two of wine, sometimes it is needed and deserved x
Click to expand...

I hear you! Ben' school have been amazing the whole way; I just worry that now he will be unable to keep up missing 50%. he is taking maths eng double science spanish history ict PE and 1/2 RE/citizenship. He is able and is set 1 eng and maths so that should be fine. ICT and PE are 60% coursework and history can be researched at home if needs be. He is so hit and miss. Yesterday played football match came home said he was tired and then got bad headache did some homework then couldn't do any more. Slept but got up 5.30am for the toilet(unusual) and now can't getup for school so will go in at lunchtime. Last week 2 great full days and then 2 bad days off.

Wish we could find some pattern or know when it is going to be like this. Will it improve is the big question? Bloods good. Think it is because inflammation in low down so pressure for toilet etc Hope callum is ok today
 
It is sooooooo hard with teens, J is older now and up until now has been pretty good and suffered in silence, although has refused to go to see Doctor or to A&E when she has needed to!

Massive meltdown this weekend in hospital, saying she doesn't want to take meds that don't help, she wants to eat what she likes, because it makes no difference anyway! Hard, when she has a point!

She calmed down once home. I guess you have to pick your moments, there's no point in even trying when emotions are high.

Good luck :ghug:
 

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