# Need IBS Hope!



## crimsonknight3 (Jun 28, 2012)

Hi there everyone,I've been suffering with IBS for almost 7 years now, it started when i was 17 and up until the last few months i've gotten no support from local gp's in 4 different town, I always go from very infrequent painful and small bowel movements with occasional blood and mucus to terrible convulsions in my stomach + cramps + diarrhea. This has totally ruined my life so far, it got in the way of my university education, it's seen me sacked from the only 5 jobs i've ever had, caused my relationships to fall apart under the strain of not being out of the house much and caused me so much depression and I want to know if there is any hope. I've tried modifying my diet every which way to no avail, trying to find a trigger by cutting things out, high fiber diet, fiber supplement (isphaluga husk) i've tried stool softeners and been put on different anti depressants to try and help my ibs. Up until now i've never had a single physical examination despite the fact the gp's could see what this is doing to my life but now im much more worried because i'm going to be a dad at the end of this year and i desperately want to be able to do all the normal things a father does but as the diarrhea attacks appear out of nowhere and if i try to hold it for more than a minute or two it comes out whether i like it or not due to the convulsions. Im seeing a gastroenterologist soon and i'm not even sure whether my symptoms are ibs or something more physical i've lost all hope of ever being able to lead a normal life. Its like every solution i try seems positive for a week or so but then i have a bad attack and end up back at square 1 more hopeless than before. The ONLY way i manage to get out when i absolutely HAVE to is to take anti-diarrhea tablets KNOWING that it will just make the next attack even worse. I kept thinking that it was all just in my head because i have attacks when i get anxious about going out but recently i haven't been getting out much for other reasons and i noticed that the frequency of attacks only slightly lessens when i'm in the house more. I hope people might be able to help. Thank you for reading.


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## mc123 (Mar 30, 2012)

I'm very sorry to hear that you have to go through this and that you have not found any doctors that have taken your condition seriously. I have heard from a few doctors that if there is blood in your stool that can be indication of something more serious than IBS, possibly IBD. You should definitely mention that to the gastrointerologist at your appointment and maybe suggestion a possible colonoscopy to see if there is something else going on than just IBS.My symptoms have only really improved over time by changing my diet completely and altering my lifestyle to fit my condition. I have read that hypnosis has worked for a lot of people on this site. I have yet to try it, but it may be worth a try! Congrats on soon becoming a father! I hope it all works out!


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## BQ (May 22, 2000)

Stop using the antidiarrheals as you can see the vicious cycle they are causing you.Instead treat the constipation _everyday_.Here is a great guide:http://ibs.about.com/od/constipation/a/SelfcareIBSC.htm


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## crimsonknight3 (Jun 28, 2012)

BQ said:


> Stop using the antidiarrheals as you can see the vicious cycle they are causing you.Instead treat the constipation _everyday_.Here is a great guide:http://ibs.about.com/od/constipation/a/SelfcareIBSC.htm


Thank you for your advice. I've already spent the better part of 3 years trying to fit a diet to suit my body but every time i seem to make progress my IBS symptoms creep back in until its just the same. I even tried varying my diet on a frequent basis but everything i try is in vain. At my colonscopy they didn't find anything, however i've watched a lot of colonocopy's online and i noticed they didnt examine the entire colon, only 4 points at which they took biopsies, they seemed to skip big chunks otherwise. I really am down to my final few options now. Councelling to help deal with stress and anxiety hasn't worked in the past. Not because i am unwilling to admit my flaws and deal with them, but because the anxiety is almost totally subconcious and it seems that no matter how relaxed i feel, my ibs still flares up. Im going back to the dr's soon and im going to ask if she can give me a trial run on some sort of anti anxiety tablets. Ive had to come off of my current anti depressants due to mainly an excessively fast heart rate but also because i am going to be a dad at the end of this year and my anti depressants put me in a pretty deep sleep and if i wake up early i feel very sick.The colonoscopy seemed like my last hope and now i'm barely sleeping because of stress and worrying. Up until now ive tried to just get on with my life day by day but after the colonoscopy results i feel completely devoid of all hope at ever having a normal life, or being a normal parent to my daughter-to-be.... I really am at a loss as to what my future holds now but what i do know is that ill probably end up alone. I can't expect my partner to work while im stuck at home because no employer will have me for more than a few months before my ibs gets too much and im asked to leave due to being 'unreliable' even if i work hard and get there early every day.


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## crimsonknight3 (Jun 28, 2012)

Just an update, ive tried a lot more things since my last messages and still nothing. Im due to see the gastroentorologist soon and i have written this letter to her, i was wondering what your thoughts are (it isnt the finished letter but what ive gotten so far.

*First of all, I've written this
letter simply because I find it hard to talk about my true feelings with
strangers and this issue has become SO pressing that I just need to convey how
much this is affecting me my partner, my daughter and our lives without
forgetting any details. The highlighting is something my partners mum told me
to do to simply to point out things with emphasis making it easier to flick
through, however I'd prefer you to read the whole thing if it's plausible to do it.*

*I would like to request that you
consider putting me through for a colostomy.*

I know that a
colostomy is a very drastic and serious procedure that has risks, and that people aren't given one just
because they want one & that your likely to instantly disagree with my
request however please take the time to consider everything I have written
thoroughly because your thoughts/decisions surrounding this will majorly effect
the rest of my life/my daughters life.

My life has
been gradually completely
taken over by my bowel troubles and it's at a stage now where I don't have any semblance of a normal life. I've had GP's repeatedly telling
me there is nothing they
can do and I just have to learn to live with it, but after years of trying I've reached a point now where I
can't stand it anymore. This isn't a whim before you think it is, I've
been considering this since I got my colonoscopy results last year. Recently
since my daughter was born however I've gone from just thinking about asking
you, to thinking of begging you for it. I was bothered by my bowel issues
however being stuck at home on benefits and without a job depressed me but I
never thought there was anything that could improve my life, until I discovered
colostomy's & now I feel is a prudent time to get it done, before my
daughter gets old enough to be seriously affected by a hospital stay/me going
through a period of learning/new stresses associated with learning to look
after a stoma.

My bowel troubles have been the end of all employment I've had in my adult life and also has been a massive
contribution to the end of all my serious relationships. I have been on
Employment Support Allowance now for over 2 years, and I've been on benefits
roughly 90% of the time since I was 18, I really want to get back to work but
my bowels are holding me back. I really wish I could do something with my life
and now I am a father and the issue has become increasingly stressful
and more important to sort out.

I can't live
with these bowel problems anymore because not only do they affect me and my
partner, but I do not want them to affect my daughter.

It's not the pain; it's not even the repeated diarrhoea and constipation
that is affecting my life so dramatically.
It's the fact that when I have an attack I lose control
of my bowel movements and in turn
it has caused me to become more and more reclusive, which is something I can't
maintain if I want to be a good father, and soon to be husband.

I know that having a colostomy will be difficult to accustom to but after researching stoma's for a
long time, I've watched videos of the procedure, people posting video
diaries after their ostomy, and the processes and problems with looking after a
stoma and changing bags & the options available to help care for a stoma
& I've read a lot of advice on the NHS websites and support forums. I've
also spent a lot of time talking about it with friends, family, and my partner, we all agree that unless something
drastic happens I will not be able to support my family more-so my daughter,
and lead a normal family life, they agree that a colostomy seems like the best option. I am
tired of not being able to work, I am tired of not being able to socialise, and
I'm tired of putting on weight because I don't get out of the house enough.

It's going to be a rough ride, but I can't
even bear the thought of spending another 8 years of trying one thing
after another, the thought of being refused a colostomy has given me
tears often lately, and worrying about your reaction to my request has kept me
awake many nights. I don't
want to carry on getting my hopes up with something new to try, just to get
depressed when I realise it doesn't work. My bowel troubles in the past have pushed me to attempted
suicide and while that will never cross my mind again for my daughters and my partners sake, I do still feel like I just can't live this way any longer.

I know that a colostomy won't
fix or change my bowel symptoms, but it's not the pain that bothers me so, it can be excruciating
at times enough to put tears in my eyes, but it's the losing control that has the most impact on my
life. I understand that emptying the bag poses new
issues to figure out, but at least if I get stomach pains, and I think I'm going to have an
attack it won't prevent me from leaving the house, I will just have to make
sure to plan ahead, which is good for me as I always try to plan ahead.

I know that a colostomy is for when all else fails however so far, nothing
has made any impact and I've wasted too much of my life aimlessly
getting test after test, drug after drug, trying to salvage my life and I think
that after 8 years the
chances of something improving to the point where I will have an improvement to
my quality of life is very slim and I seriously can't waste more of my
life randomly guessing on some drug that may or may not make a difference large
enough that I can resume a semi-normal life! The exploration of my condition
& the exploration of treatments is such a slow process that, now I just
can't do it. Someone else I know who also has IBS thinks that I will regret it,
but I've never been more
sure of something in my life, and also he has tried less than half of
the tests and drugs I have, and he has found something that has basically cured
his bowel problems (amitriptalyne). Some people have been extremely negative,
saying that although a
colostomy will improve my life dramatically, that the NHS would never allow me to be
put forward for an operation such as a colostomy unless there's something
seriously wrong with me (and because of my age).
The thought of being refused makes me wish there was something more serious
than just an uncontrollable bowel which I hate myself for thinking, because
during my research I've seen people who were seriously ill who needed a
colostomy.

I'm now becoming
more resistant to Loperamide, which means I have to
take more and more to try and stop an attack happening if I have to go out I
have to try and plan ahead and take some before I leave otherwise if I try to take them after an attack has
started I end up having to take more and more and the attacks take longer and
longer to subside, leaving me often stuck in difficult situations. I
think my record amount of loperamide taken was 18mg over 3-4 hours, and now
that amount is becoming increasingly frequent due to attacks not subsiding.

If you would argue that there are still more avenues to explore before
even thinking about surgery, below I've listed all the tests and things I've
tried over the last 8 years, some of them I've tried more than once,
however it's hard to make people understand that it is just too much and even if there could've been a
treatment that I missed because I pushed for a colostomy, I still wouldn't regret it, because I know that the
colostomy gave me the ability to enjoy my life, and my daughter's life, to the
fullest!

I've had a colonoscopy,
a LOT of blood tests, x-rays,
a ridiculous amount of gp
appointments with a lot of different gp's
and it's just all been for nothing so far. I always just get given the "There's
nothing we can do" or "You will just have to learn to live with it"&#8230;. This isn't living,
this is existing!

I've been
tried on increasing doses
of sertraline, up to 200mg, which have
made no difference, and I'm now at 100mg.

I'm having
to take amitriptyline to help with the pain
and I was solely on amitriptyline originally to try and help with my bowels, and now to help with the
insomnia sertraline brings.

I've been tried with *isphaluga husk(fibre supplements),
peppermint capsules, pro-biotics, vitamin B supplements, multi vitamins, aloe vera juice, giving up caffeine, high fibre diets, low fibre diets, exclusion diets, CBT, hypnotherapy, glucosamine,Lactulose, macrogol
(laxatives), Citalopram, Fluoxetine, anti-spasmodic's, and Toilet and food diaries/schedules
galore!*

* I've also tried **kegal exercises**, bowel retraining
& exercise itself*, I lose my appetite frequently when
I go through a period of frequent attacks and I end up not eating well for a
week or two after because of it. The stress it puts my partner through is very high as well, as she isn't used to being stuck
inside so much, yet she has her issues and she doesn't like going out on her own which puts strain
on both of us.

Now with a
little one in the picture these issues have become more important. The way I
see it, a colostomy is my
only option if I want to regain any semblance of a normal life before it is too
late. If I have a colostomy now, I won't miss out on much of my daughter's
life, I know there's a
long recovery period and a steep learning curve but any way I look at it, the
pro's, especially more freedom, always outweighs
the risks/cons of a colostomy.

I'd do anything to get back to work and start
living my life and I am sceptical that spending another
few years trying to figure out something that may or may not work that
doesn't involve surgery but that
is time I do not want to waste away because I will never get that time with my
daughter back.

I'll never be able to forgive myself if I miss
even a second of my daughters development because I'm stuck on a toilet for an
hour or can't go out with her to a theme park etc.

As
it stands, the family are having their annual holiday in April and it will be my
daughter's first holiday and my anxiety is utterly through the roof because
it's going to be a 5 hour car journey, I know that in order to travel such a
long journey/be on holiday away from toilets for long periods of time, that I'm
going to have to start taking 1 loperamide a day 2 days
before the journey, then 2/4 on the morning of the journey then 2 a day for the
entirety of the holiday. It means that when I eventually
get back I get an EXTREMELY painful attack that makes me wish I never
went on holiday, and this is the biggest issue with my bowels, it creates a dilemma. I can choose to miss out on my daughters first holiday, and have a
stress free but very depressing week, or I can put my
body through hell just so I don't miss out on my daughters first
holiday, and it's this same dilemma on an almost daily basis that is making me
so strong willed about a colostomy


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## Dennis N (Feb 5, 2013)

For your diarrhea, please try some colloidal silver. See my story here ... I think what I did can help you, too.

http://www.ibsgroup.org/forums/topic/160314-i-think-i-kicked-my-ibs-pi-symptoms-to-the-curbside/


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## crimsonknight3 (Jun 28, 2012)

After my appointment with the gastroentorologist she decided she will send me for one final test, an MRI of my small bowel. She told me that if that comes up clear then there are no other tests they can do, and she will consider putting me through for a colostomy, however she also said she would like to talk to the rest of her team and a surgeon first. Whilst reading my letter she seemed to look very bemused and skeptical and didn't seem to take me very seriously, but after talking to her after she read the letter she started taking me a bit more seriously and even complimented me on the depth of the research into colostomies i have done. I guess its just another waiting game.... story of my life. The MRI is on the 1st march and my next appointment with the gastroentorologist is 17th April, more waiting


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