Before I start I like the banter on here but I would prefer none on here as for me this is difficult to post.

 

13 years ago I went from a healthy 12 stone to 9 3/4's in about 6 weeks, I was diagnosed with indeterminate colitis and only survived by the doctors removing all of my large bowel and I ended up with an ileostomy (bag). At 24 this was sole destroying but it did save my life, once I gained weight and recovered I had 2 more ops to have things reversed and an internal pouch made from small intestine. I've had this ever since but it has never been right but put up with it as it was a better option. I probably get up 2-3 times every night and can count the number of times in the last 13 years I've slept through the night on one hand. But for the last 12 months things have been worse, I'm usually up 3 times a night and have bad stomach pains for 1 1/2-2hrs three times a day that co-incides with food and have to go back and for the loo every 15 minutes for these spells of time. Doesn't sound great and it's not but I preferred that to going back to an ileostomy. To cut a long story short the specialist put me on a 3 month course of 3 different antibiotics, 1 month of each but after only 5 days of finishing the problems came back. He has said there is no more he can do so I am left with a choice of life long antibiotics and the risks of long term effects or going back to the ileostomy. I don't want either but am a bit f@@ked really. At 37 I thought this decision wouldn't come for another 20 years, I always said I wouldn't go back as it made me feel horrible but I can't put up with the discomfort and pain either. Really am struggling to get my head around this and what to do??:sad:

Wow, i didnt realise mate, i cant imagine what you must have had to deal with through it all. I know what you mean about the bag, but will you not be in less pain with it? Are you able to control when you go with it, or is just whenever nature takes its course?

 

I dont think theres an easy answer, but im surprised theres nothing more to try, medically.

What are the long term effects of the antibiotics?

Christ mate,firstly sorry to hear about your condition!,sounds to me you alone are the best to choose,as you have the pain etc.All the best,

Daz.:wink:

Many doctors, and patients, raise concerns about the long-term effects or side effects of antibiotics

 

On the issue of side effects-

 

Many antibiotics, especially the tetracycline family such as the doxycycline used in most CAP’s or minocycline, have been used long term (i.e. for years) without harmful effects. They have been used this way as immunomodulators, in low dose protocols(such as for arthritis) and at regular doses

 

 

over use is a concern however from what i gahther the use of two anti-replication antibiotics which work on different proteins in the replication process (e.g. doxycycline and azithromycin combo) is done specifically to minimize the possibility of resistance. Additionally, these antibiotics are not the ones used to treat the dire acute disorders where potential resistance could be fatal

In theory I would be pain free if I go back as it is caused by inflamation in the pouch. Anti biotics are ciprofloxacin, augmentin and metrozidanole which isn't nice

In theory I would be pain free if I go back as it is caused by inflamation in the pouch. Anti biotics are ciprofloxacin, augmentin and metrozidanole which isn't nice

 

not a nice mix bud draining i bet!!!! ..........i can ask in work mate (or try to) shame you are not in are coverage area for the private clients we handle or i'd suggest a consultation :/

Sorry to hear this Anthony - I had no idea you suffered like this mate.

 

One of my friends suffered from a similar condition to you; having a 'bag in his early 20s. He went to the USA for a major op back in the early 1990s to have his intestines re-connected (much like you did).

 

I'm sorry I cannot give any conclusive advice but if it were me, I'd certainly seek a second opinion. Failing that I'd probably have to take the option that caused me the least pain and inconvenience.

 

I wish you all the best Anthony and sincerely hope you can get things sorted.

 

Richard

Bugger that - that's a place I wouldn't want to be. That's a difficult decision all right.

 

Whats the long term effects? You mean side effects of the meds, or probs due to the issue itself?

Bugger that - that's a place I wouldn't want to be. That's a difficult decision all right.

 

Whats the long term effects? You mean side effects of the meds, or probs due to the issue itself?

 

both buddy

Hey Anthony, really sorry to read this mate. It must be incredibly difficult. If you could, I would certainly try to get a 2nd opinion. I think you must to be honest.

I didn't know this mate...

 

May or may not help, but my mate has been suffering for about 18 months but they dont know what! Its like cromes (SP?) but im not too sure.

Anyway, whatever it is, his mom had when she was young.

She went through all sorts and went for the bag. He tells me she had he best health of her life after that.

He didn't want the bag, for the reasons you probably dont, but with getting worse, he's gone for it.

His having 3 op's to remove it, he had his first last week.

He's arely 30's.

So sorry to read about this Anthony I hope one day they can fix this for you permanently mate and go for the less pain option till they come up with something else.

sorry to hear that i didnt relise you had this condition. Is there no one else you can see?

This is when it makes you realise that when life is bad and gets you down, you feel at your lowest, and nothing can be as bad as it is...... until you read a story like this...

 

I had an image of you buddy, that you was a young guy full of beans, wanting to mod a 300zx to extreme, like you have in the past. Then a small thread, opens up a whole new world that shows us people what is really going on with people we get to know via the internet.

I am taken aback with this news buddy, and i hope you find the ending to this situation, in your life that, you alone want and need....

Best wishes to you my friend...

 

Al.

Thanks for the kind words and advice, I think I know what I have to do but not keen to do it. We do have private health cover so will go down that route 1st I think.

 

I will continue to mod the 300 so don't worry about that, I've had this for a while so tend to 'just get on' with this and push on.

i ahvent read all the replie's mate im a little hung over lol, my advice is shite with consultant's and doctor's, get some private cover and see a real specialist, wont go into it but someone i know had severe bowel prob's and all was a loss and resulted in a colostomy bag (think that's what it was called) for many year's and he got sick, his family payed for private care and they got to the bottom of the probs and all is fine now (i say now, havent seen him for many years)

 

i can imagine how it is as i get IBS and it's terrible

 

hope you get it sorted mate

I'll swap ya!....

 

Rich

Bags are okay the only prob is getting shoes to match.:wink:All the best and sorry to hear about your problems, only you can decide really.Take care ...Vinz

Well went to see the specialist yesterday....

 

Basically nothing more they can do so it's high strength antibiotics which may eventually wear off and stop working or under the knife! TBH I've had a couple of sh*t weeks and several nights of being up for 2 hours in quite a bit of pain so back on the tablets.

 

I think I have accepted it's tablets for a year or so and then accept my fate under the knife, man this sucks!!

Anthony ...you have my respect and sympathys mate.....i think you are doing the right thing under the Bio's for a year then take it from there....its all about quality of life at the end of the day .....whatever is right for you ....whatever makes you feel better ..whatever gives you the best quality of life regardless of Bag, tubes or whatever anybody else thinks about it so long as you are better in yourself..and pain free !! good luck fella

You have my full sympathy but at the same time your attitude and approach is truly admirable and I wish you all the best.

 

Time and time again we are all reminded of what really matters in life and moreover how much else is atually going on in people's lives, and it really humbling.

 

Can't say much on the medical advice front except do what's best for you.

 

All the best.

Hi Anthony, only just seen this thread. Stay away from the drugs if possible and go with the surgery matey. Your quality of life is more important.

Thanks for sharing your situation though, it's inspiring!

 

Andy