Aarons Life So Far

[aarond]

Hi boys and girls,

I registered some time ago when I first got diagnosed but havent really made full use of the support available.

Well I got diagnosed around 5 years ago with Small Bowel Crohns Disease of the terminal Illeum via every test available!

sigmoidoscopy
small bowel barium meal
pill camera
white blood cell scan
colonoscopy
faecal calproctein etc etc some were better than others lol

during my time with the dreaded crohns I have faced many obstacles and had to have a lot of change in my life. was a happy 20 year old who could do anything on the drop of a hat, had my girlfriend , car, job etc andi couldnt ever want more until...... stomach problems arose.

Ive escaped surgery strangely enough but Ive never really settled down or remission as its called has never came.

I was first placed on pentasa granules and it seems I am intolerant of these as it made the bleeding worse which lead to anaemia. The only thing I could hand on my heart say that helped is the Steroids but with that came terrible mood swings, depression through the weight gain, and no sleep for 5 days at a time.

This dragged on for a few years and I was left unsupervised without a taper plan on the steroids and they have caused some damage to my bones and to be quite honest my mental health. I wasnt a very nice person a year or 2 back and without being so ignorant to blame it on the medication I will openly admit that I have struggled to come to terms having this debilitating illness.

Because of the way I now was my partner strayed which killed me when I found out but I dont blame her, just wish people could be brave enough to talk or end the relationship without all the hurt of cheating, but thats a different ball game for another day lol

My confidence was and still is rock bottom, im still with my partner and i havent forgiven but I have kind of forgot. I do think sometimes that is it because of my looks, stomach, weight, the way I get all nervous if there isnt a toilet nearby that made her do what she done or is she going to do it again if I have a major episode again ? I just dont know.

Ive got another scope coming up and at the moment I take codeine phosphate for diorrhoeah control and ive had to stop this medication for the scope.

unfortunately its too late, im dependent on the medication so I am going cold turkey, hence the seek for support and any similar experiences.

Well i'm going to stop rambling now and hope everyone is well.

Thanks

Aaron

 

[xJillx]

Hi Aaron and welcome back! What maintenance medication are you taking at the moment? Is it helping at all? Do you have a plan for the next step?

As far as your partner, I sorry if I am too blunt, but you should lose her. You deserve better. Your partner, if she truly loves you, should be by your side when you are ill and not off cheating on you. I think you might be staying with her because you confidence is low and you don't think you can do better. But I am sure you can find a girl who loves you, supports you, and treats you the way you deserve!

 

[aarond]

Hi Jill, thanks for the warm welcome.

A present I have just come off Mercaptopurine due to the side effects getting too much. Thats the reason for the colonoscopy , to try and find the next route of action. My gastro has mentioned the infusions but thats expensive , but thats just typical of the uk medical system.

Please dont worry about being blunt, I love bluntness and have had enough of mind games and reverse psychology lol.

I take what you say on board and sad thing is I think your right. Im looking pretty good now ive lost some of the roid weight and started to get the old muscle back BUT im so low on confidence its really strange. and its also weird how Im managing a team of engineers on a pharmaceutical building site and I have the confidence at work....

work that one out lol!

Aaron

 

[Crohny]

Aaron,

What kind of side effects did you have from Mercaptopurine?

 

[aarond]

Blake,

Well I was getting alot of dipping of the White blood cells which was making me feel very bad indeed. And the worst experience a few years back which the put down to 6MP was a Pulmonary Embolism (bloodclot of the lung) which nearly finished me!! just not meant to be i think lol!

 

[Crohny]

Oh wow...
Just curious, I am taking Mercaptopurine along with Pentasa- and I go through a bit of depression/bad moods.
Did you just quit, or did you slowly ween off?
Are you taking anything now?

 

[aarond]

well I went on pentasa as my first port of call but that made the bleeding far worse. The depression/ bad moods god yes , almost as bad as prednisolone I believe.

I was on 150mg , so I tapered 2 weeks at a time down to 100mg and then 50mg to nothing.

No im not on anything apart from trying to kick codeine phosphate so taking some diazepam to help ease the restlessness but after the colonoscopy we shall see. In some weird sort of way Im hoping things are looking pretty messed up inside so i get on a new treatment because I know damn well my gastro will want to start me on 6MP again!

What dosage of 6MP are you currently taking blake? also any sickness?

 

[Crohny]

yeah, when I was on prednisone I made my wife cry on a regular basis.
Ok, I will consider doing the same... I can't remember what dosage I'm on. But I'm tired of feeling blah all of the time, so I'm going to try a taper off and see what happens.
It would also be nice to have a functioning immune system again (even if it is a little out of control).
I've been loading up on supplements and eating well, and haven't had a flare since.
At least the meds are available, should we ever need them. I just want to try something different.
Keep us posted on what your treatment will be after your colonoscopy. Good luck man!

 

[aarond]

wow same situation blake, hence the want to come off them.

Wish you all the luck in the world too!!

Aaron

 

[xJillx]

Hi Jill, thanks for the warm welcome.

A present I have just come off Mercaptopurine due to the side effects getting too much. Thats the reason for the colonoscopy , to try and find the next route of action. My gastro has mentioned the infusions but thats expensive , but thats just typical of the uk medical system.

Please dont worry about being blunt, I love bluntness and have had enough of mind games and reverse psychology lol.

I take what you say on board and sad thing is I think your right. Im looking pretty good now ive lost some of the roid weight and started to get the old muscle back BUT im so low on confidence its really strange. and its also weird how Im managing a team of engineers on a pharmaceutical building site and I have the confidence at work....

work that one out lol!

Aaron

So, are you not taking any maintenance meds at the moment? Not good! I know Remicade (I assume that is what you mean by infusions) is expensive, but what is more valuable than your health? However, there are other options. Have you tried Imuran?

Mind games, huh? I bet your partner is filling you head with loads of garbage, and making you feel so bad about yourself. And she is probably doing this to remain in control and keep you from getting the confidence to pack up and leave. It's time to move on my friend. It sounds like you are a really nice guy and have a successful career. I any other girl will treat you like the catch you are!

 

[aarond]

jill,

yes apologies i meant remicade when I said infusions. I think because it works differrently here where we dont pay for each treatment we dont really get a say in what treatment we receive not good but at the same time I know the USA have it alot tougher with cost etc.

thanks so much for your kind words, it sounds kinda sad how I have to resort to the net to try and get a bit of confidence and make some like minded friends hopefully even if they are 10,000 miles away (not sure exact distance to usa lol)

once again thanks, words have meant alot.

Aaron

 

[Goldfish]

Hi Aaron. Just remember it doesn't matter where you find friends. Friends will be there for you and its good to know where to find them. I cant give advise like everyone else besides this as I am so new to Crohns but I would like to wish you the best. :thumleft:

 

[Astra]

Hiya Aaron
and welcome back

It's a shame but it happens, and that's why I kicked my ex into touch!
Anyway, you're better than that and I think it's time to move on my friend.
And even tho your arse is touching the floor right now, self esteem wise, it will pick up.
So, first off, if you're having problems with mercap then it's sister Imuran is no better, I was allergic to both of em!
NICE guidelines say that once you've exhaused all other meds you will fit the criteria for Infliximab (remicade) so don't give up on that one!
It is very expensive, but it won't hit your pocket!
Can I recommend Amitriptyline? Knock the Codeine phosphate on the head and ask for the Amitrip. This med is my Godsend, I'm loving it! Lovely blissful sleep.
I take 25mg at night and slip into a coma til the alarm goes off!
At these low doses it blocks out pain, cramps, keeps you calm on Pred, eases joint pain, headaches and restless legs!
At high doses it's an anti depressant, read up on it.
I wish you luck and when You've dumped the girlf, can I also recommend Match.Com? It's where I met the love of my life! At a stage in my life where I was at rock bottom!
lotsa luv
Joan xxx

 

[aarond]

I know I keep saying it but Really, thanks for the kind words.

Astra thats some brilliant advice and just the type of advice i need to hear especially regarding the meds. Codeine is really a double edged sword. i Use it for the diorrhoeah but obviously side effects outweigh the good points.

Hope everyone has a good weekend, im preparing for my last supper before my scope on tuesday lol.

Aaron

 

[Dexky]

Welcome back Aaron! My son was on 6mp for a little over a year and he too would occasionally find himself crying for no apparent reason. When an 11 yr old boy, especially one who has always been so happy-go-lucky, asks his father why can't I stop crying, you know something is up. Kids don't have the emotional baggage we adults carry around so it's a definite indication of 6mp side effects. He's been on Humira a few months now w/o problems. I hope you find your mojo soon Aaron! Good luck!

 

[aarond]

Thanks Dexky for your kind words! All the best Aaron