Hello People

[ketts199]

Hello guys and gals, my name is Ben and I am 18, 19 very soon I live in the UK in Mansfield which is in Nottinghamshire, I would like to say thank you for accepting me into this community.

So lets start from the very start, I was diagnosed when I was 15 I was pretty normal, before then but i did have slight bowel problems, it all started off with really bad stomach pains and I stopped going to school, my mum got very angry as she thought I was skipping school because I didn't want to go. I eventually decided that enough was enough and went to the doctors and before i knew it I was rushed into hospital with suspected appendicitis. that night I had key hole surgery and my appendix removed, the recovery went well and I was home in 2 days. As all was well I decided to go down to my dads for 2 weeks, A week later I was rushed into hospital again after spending about 2 hours in agonising pain they gave me some painkillers and I was rushed into surgery, when I awoke I was told I had had a bowel resection, this was due to an ulcer in the hip. I was also informed that i nearly died during the surgery.The recovery went well spent two to 3 months out of school because I couldn't get around or upstairs.

Everything seamed OK for 4 or 5 months, then I was rushed into hospital in agonising pain again at this time they didn't suspect anything going on, I had a couple of test x rays and a barium meal they saw some narrowing and referred me to a gastroenterologist (who was one of the best doctors i have ever met) after leaving hospital i was home again for a couple of months and it all happened again, this became a frequent thing (still is in the to this day), . I had about 3-4 endoscopy's till they finally diagnosed me with crohns, I was put on pentasa and prednisolone I was stable on a high dose but every time they kept reducing the prednisolone I ended up in hospital so I was put on azathioprine this helped a little, so the decided to put me on infliximab. Being in frequent pain,having loads of tests done and being in hospital regularly took its toll on me and I became severely depressed, suicidal even, this had been going on for 2 years now, I ended up in a child's mental unit for 7 weeks and put on strong pain killers to keep the pain away and antideprsents.

I turned 18 last year and was bumped up to adults and moved to a new hospital, and got a new gastroenterologist (who I dislike and with now), again being in hospital, pain and all the tests still made me depressed and I attempted suicide and again was put into a mental unit, around this time I developed more mental issues, psychosis which is stable now but is very scary. My parents decided during this year that enough was enough, the psychotic episodes and frequent hospital stays took there toll on them and while i was in hospital made me homeless, so the rest of this year has been spent in recovery units/mental units, I have just got a place on my own which is a supported housing, so if I become ill there is help just down the hallway.

So that's my story, any questions feel free to ask.

Ben

 

[braveheart]

Ben,

I think that Crohn is not the end of the word, but it complicates everything.

Apart from Pentasa and Predinsone you already mention there are many drugs to treat Crohn Disease nowadays. You may want to talk about this with your doctor. Everyone respond in a different way using the same medicines. You‘ll find something suitable for you.

Welcome to the forum

 

[woops!]

Ben, Welcome. I am sorry you are having a rough time of things. Please know that this is a place where you can come for support any time you need it. There are alot of members on here who have helped me with many issues. Good luck

 

[Rebecca85]

Hi Ben, I see you are very near me! Sorry you're having to go through all this. Is there any chance the psychosis etc is linked to the prednisolone? And if you don't like your gastro is there any way you can request a transfer (either to another hospital or another doc in the same hospital)?

 

[Dexky]

After all that, your parents thought what??? You were making it all up!!! Ben, I hope you can overcome the pain and get your life on track. Then you can rub it in the faces of everyone who has turned their back on you!! Good luck!!

 

[Tacykakes]

Geeez --you have been through the ringer too. I'm with the statement above BEAT this and rub it all in their faces. The beauty of being 18 is you have more freedom to choose your care and just because they assigned you to one GI doesnt mean you need to stay...you have many friends here and I hope this forum helps you as much as it helps me!

 

[Tacykakes]

By the way what antidepressants are you on? I'm on a few and can see how younger fragile minds may get messed up from either high doses or them or a change in them. I fight the saddness a lot and when I was your age I was put on them for frequent migraines (turned out to be wacky horomones) and because anorexic....(however who knows if maybe my buddy Crohns was around then too!)

 

[Guest]

aw Ben i am heartbroken for you.... i have a son your age and there is nothing, short of premeditated murder i guess, that would make me turf him out of our home and our family.

i am glad that you've had the strength of character to ride through everything, and get yourself into a place that is safe and has resources nearby.. as has been said, you're an adult now so i guess in one way that's good - you're in control now.

i'm also glad that you've found and joined us - you'll find good friends on here, and people to reach out to at all hours of the day and night.

have you tried contacting NACC in your area at all? they have meetings, and might even have a one-to-one service.

it's true that you don't have to stay with the same NHS gastroenterologist - you can shop around, ring other hospitals in nearby towns and see if there's anyone else you could see instead. if you have a social/support worker, maybe you could enlist their help on this.

 

[ketts199]

Thanks for the warm welcome guys, Rebecca85 I have met the other gastro who is the head of gastro at kings mill and again he is not the best even worse than my current one in fact and I don't drive so getting to QMC but to be honest it might be worth doing. They also took me of the prednisolone to see if that was the cause of the psychosis but the psychosis symptoms still remind for months till I was put on a anti-psychotic.
Tackakes the anti-depressant I take are Fluoxetine - 20mg (to stabilise my mood) and Nortriptyline - 30mg

 

[Rebecca85]

I go to the QMC. I have not had a problem with the consulting team that I see as an outpatient, but the doctors I saw as an inpatient left a lot to be desired! (though now I have been assigned a consultant I should see him if ever I get admitted again, before I was undiagnosed and got all sorts of docs sticking their oar in). But I like the fact that the QMC is linked to the University of Nottingham, and they do research into IBDs. It would be quite a trek for you though!

 

[Sandy]

Welcome Ben,
I too had some bad docs in the past. You have to push to get one you can really trust, but there are good ones out there.

I can really sympathise with your problems: I attempted suicide at 24, and had a hospitalization back in 2000 due due to a combination of budesonide (which I'm still on) and an antidepressant called Effexor (which I should never have been put on). I still get depressed and so I'm trying to get off the budesonide. A friend of mine had to go on heavy doses prednisone for a different problem and she had suffered severe psychosis -- she couldn't even speak.

But Crohn's can be such a miserable disease sometimes that it causes its own mental effects. For all I know it could be it directly causes mental illness due to inflammation in the brain! I'm just guessing, but it's known that it can cause eye inflammation and joint inflammation.

So try to keep in mind none of this is your fault. Good luck to you and I hope at some point you can reconnect with your family. Till then you got family here.

Best,
Sandy

Dx 1963
Now on:
Asacol
Azathioprine
Rowasa
Budesonide (sprinkled lightly in Rowasa, shaken, not stirred)
Folic acid

Other stuff for:
Seizure disorder
Hypertension
GERD
Depression
Glaucoma
Osteopenia

 

[Melliejay]

I really feel for you and your story and I admire your strength in working through everything you've had to tackle with little real support by the sound of things.

I am not sure if it's the same in UK but in Australia some doctors are not overly familiar with how different drugs interact. I would recommend you find a qualified pharmacist to consult with, develop a relationship so they know your history, and check with them regularly to make sure the drug combination's your docs prescribe (and anything you buy over the counter including vitamins) are not introducing more issues. Just a precaution I would recommend as you already have so much on your plate it would be terrible if more health issues were to arise due to combining drugs. Good luck!

 

[sinful777]

Hi Ketts,

I am so sorry what your family did to you. I can not take prednison either due to mental issues. I have found out that the steroids makes it so much worse that what it normally is. I also found out that dealing with the pain and everything that comes from Crohns makes the mental problems a lot worse because I spend so much time worrying about the pain and what not.
Also recently I had a problem with my old GI..he sucked and did not tell me anything that was wrong with me. His favorite thing to say to me was, "oh yeah, it is the Crohns", but would never explain it. I switched to a different doctor in his office, hoping this guy is better.
I do hope you get everything under control and get a great doctor who can assist you with all the help you need. I also hope you do not need to go back to the hospital. Keep us informed and thank you for joining the site.

Angie

 

[carrollco]

Oh, Ketts, I am so sorry you are going through this. I will not take Prednisone because my mother went totally mental when they put her on it for back pain. Stuff scares me to death.

Hang in there. Crohn's is not worth dying over.

 

[Astra]

Hi Ben
and welcome fellow Brit

This story is so sad, and it angers me that your parents disowned you in your hour of need.
Someone's already mentioned the combo of drugs, I gotta agree, you never know what each one is intereferring with, there are so many complications with lots of meds. Try and do your own internet research, and get yourself armed with ammo to fight.

some questions - why are you on 2 anti depressants, one's a tricyclic the other's an SSRI a serotonin reuptake, isn't fluoxetine sufficient enough? These 2 could be screaming and fighting each other!

what happened to the Infliximab (Remicade)?

If you were my son (my kids are 19 and 16) I would take you back to the GP and start questioning, and start weaning you off this cocktail of mind blowing drugs.
Worried about you
Also, as a UK citizen you have the right to choose were you go to be treated, and your GP has to comply.
I hope you find the courage, strength and determination to fight this, we're all here to help you, you're no longer alone with this
lotsa luv
Joan xxx

 

[ketts199]

I am on two antidepressants one is to stabilise my mood and the other is for the chronic pain, the pain specialist did said there wouldn't be a problem with being on the two, also my pdoc can only change those fluoxatine I believe.
I am still on the infliximab every 6 weeks been on that for about 2 years now, personally I don't think it helps me, as nothing seams to change on it but my GI seams to think differently. I know I need to get of this cocktail of drugs if I dont take the fluoxatine I become suicidal, if I dont take the anti psychotic, I get psychotic episodes, I am weaning off the pain killers but the only downside to that is that I am in more pain, and I cant do as much as I used to.

 

[Astra]

Hiya Ben

Ok hun, really hope you can get something sorted soon with your pain.
Just remember we're all here for you, whenever you need us.
xxx