# New on the forum long time ibser



## williampwilkins (Sep 4, 2016)

Hi everyone. I'm new here; Although my problems started for years ago, and to be honest; my life has never been the same.

4 years ago, I suddenly started getting very sick. I was in pain all the time (the middle of my abdomen, and my right side.) I was going to the toilet 20 times a day minimum. I lost a lot of weight. I went from 79kg down to 60kg (Apologies for those of you in America i don't know what that is in ibs. lol)

Anyway, after countless visits to the gp i was told it was 'IBS'...A few weeks later the pain got so bad i had to force myself down to the GP and tell them something wasn't right. They wrote a note for me and i headed to A&E funnily enough; the note mentioned 'to rule out appendicitis.' Anyway after the 6 hour wait to see a doctor they finally analysed me. They instantly decided it was my appendix that needed to be removed. Fast forward post surgery....The doctor came to show me my appendix....(It looked completely healthy.) He gave me some excuse about how 'it was inflamed from the inside.' They also told me that i had way too much mucus in my system.

Moving on a month after surgery, I was still experiencing severe pain in my right side. My gp reluctantly (Yes, really...) referred me to a gastroenterologist. Where after a 4 month wait they finally did a colonoscopy. Which came back clear.' I started to accept that i'd have to live with so called 'IBS' I spent the next year trying EVERYTHING the lowfodmap diet, gluten free, anti diarrhoea medication, peppermint capsules etc. Nothing worked. The only difference was I was gaining weight again but i was still in pain. So much so that i spend most of my days lying on my couch unable to do anything.

Went to see my gastro again, and told him nothing was working. He referred me to a pelvic floor unit at Guys and St thomas's hospital. Where they concluded I have a condition called Animus. Where my rectum is constantly tensed...Yet again...to no avail. Although i was only going once maybe twice a day. My stools were solid but very painful to pass. I was having moments where i'd have the most excruciating pain I've ever felt just before passing a normal stool (this still happens now but we'll get there.) I end up waking up in the middle of the night sometimes with this same excrutiating pain before having a diarrhoea episode.

Over the past 4 years i've been to A&E so many times; to the point where they diagnosed me with Anxiety in the end. The only tests they ever do is a CBC...as soon as that comes back normal they tell you to F off. Honestly, since my diagnosis my life has been so crap. My g.i has told me my ibs is 'severe' whatever that means. My way of life is an absolute disaster at the moment, but i'm feeling positive that we're getting closer and closer to finding out what the real issue is.

To be honest with you i don't believe IBS is a 'functional' condition. I'm going to post some interesting research that i found later, which actually defends my thoughts. I'm sure a lot of you know how frustrating it is to be told 'There's nothing you can do, it's not serious; you just have to learn to live with it' I'm sorry but that's not acceptable in my eyes. I don't understand how something 'functional' can wake me up in the middle of the night in severe pain and have me crying on the toilet for the next half an hour.

I initially went to A&E yesterday and they took me seriously, in fact they felt bad that they couldn't do anything more. They even gave me a dose of prednisone to reduce the pain. and referred me back to my gastro to get an upper endoscopy and pill cam to make sure they haven't missed anything. Which makes me believe IBS is starting to be taken more seriously (I'll be going through more detail with this in another post.)

Has anyone else on this forum been diagnosed with a condition called Anismus, by the way?

To anyone out their who feels like they want to give up, keep pushing. Don't let your GP or Gastro tell you 'It's IBS.' push them to do more tests, or to refer you to even bigger specialists.

Thank you for taking the time out to read this.

regards,
Will


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## annie7 (Aug 16, 2002)

Hi Will

welcome to the board and thanks for your post about ibs and inflammation. very interesting. and yes, as you mentioned, i've read other articles like that one. it's encouraging to know that there is research being done on this.

and yes, you are right about how important it is to request tests and specialists. i was originally diagnosed with ibs-c but after reading here on the board and elsewhere online, i began to think i had more going on than ibs so i got a referral to a good gastroenterologist and asked for the sitz marker test (colonic transit study) that test showed that i had colonic inertia. based on the placement of the sitz markers, my gastro doc then ordered a defecography. that test dx'd pelvic floor dysfunction (anismus) . then i had an anal manometry to further explore my problem of anismus. this test measures the tone in the anal sphincter and rectal muscles. it measures resting and releasing anal sphincter tone, squeezing anal sphincter tone, muscle coordination, explusion of materials and sensation in the rectum.

did they do anything to help you at the pelvic floor unit--like send you to biofeedback training and physical therapy? that can be quite effective in retraining the rectal and pelvic floor muscles to learn to relax and coordinate properly. and there are other ways of getting the rectum to relax such as baclofen suppositories. anismus can be treated although unfortunately not everyone finds success with treatment.

it's a crime how your docs keep fobbing you off. i was lucky-- i was very fortunate in being able to find good, caring and proactive gastroenterologists. often gastro docs at university hospitals or motility clinics are more knowledgeable and proactive about treating bowel problems than other gastro docs.

good luck with your upcoming tests. have you been tested for SIBO? sounds like that might be a helpful test for you to have. i tested positive for it.

i do hope that either your current doctor (or else a new one) can get your sorted and can devise a treatment plan that will bring you some relief. take good care.


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## williampwilkins (Sep 4, 2016)

Hi Annie,

thanks a lot for the welcome. No problem, honestly i've got to much time on my hands lol. From the looks of those articles i'm hoping that a definitive physical cause may be found in the next couple of years. 
That's the thing, we have to be persistent.

Right! I never formally joined the forums until now but over the last few years i read through a lot of them, and it's through that, and research that i insisted other tests be done. I did the sirs marker and defecography as well. They concluded i had a grade 4 slip of my rectal muscles.

Yes they did, i started pelvic floor retraining with them. Kegal exercises, stuff like that. It's helped in a sense because i was going to the toilet once a day, although i was still getting pain in my abdomen, and cramps. Along with the constant feeling of needing to go even when i've emptied. Just waiting on my consultant to get back from holiday (sigh) and they're going to refer to a colorectal surgeon, and another gastro (more specialist one.) I'm going to ask them about a botox injection because i've read that, that can be successful.

From what my consultant said, it can take a lot of time. Although Anismus is also very new, and still isn't considered a solid diagnosis. For example: there's only one consultant in the entire hospital for it.

Thanks, yeah i was tested for Sibo 2 years ago, the breath test was positive. I responded to the first round of antibiotics very well although after roughly a few months my symptoms came back.

Believe me; i've almost had every test under the sun.

I hope so too. So far literally nothing has worked.

Hope you're doing well yourself!


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## annie7 (Aug 16, 2002)

oh i'm so sorry you've been dx'd with a grade 4 slip of the rectal muscles (intussusception). that makes things complicated. i wonder if that is why you feel you still have to go even after you've emptied.

that's good that you'll be getting referrals to a colorectal surgeon and another specialist as well. hopefully they can help you.

yes botox can be very helpful for many people. i was unable to go that route because my insurance would not pay for it and also (more importantly of course) my c/r surgeon did not think it would help me due to my other problems.

that's interesting --and unfortunate--that anismus is considered very new in the uk and not a solid diagnosis. it's different over here. mine was considered quite severe. biofeedback helped me somewhat but i had other problems as well--colonic inertia, rectal hyposensitivity, megra rectum and a long twisted colon.

hope your consultant comes back from holiday soon so you can get the ball rolling.


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## williampwilkins (Sep 4, 2016)

I think my consultant made a mistake when she said that (She's new). My official diagnosis was Anismus as far as I know thats inability to tense and relax the muscles, which i believe is grade 1?

Sigh i hope so too. It's very complicated at the moment. I'm in pain. I went to my local ER and they said 'There's clearly a problem but i'm really sorry because we can't do anything, we don't have the means necessary, you'd have to see you're specialist' So until she comes back, i can't really do much.

Ah, that sucks! I guess there a pros and cons between both private, and free healthcare.

Yeah it's really bizarre here. They think there is a more underlying cause than just Anismus.

Lol. I hate that my guts have to be so complicated.


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## annie7 (Aug 16, 2002)

yes, you're right. anismus or dyssynergic defecation is the failure of the pelvic floor muscles to relax while having a BM. and yes, that's grade 1.

no, i didn't like being complicated either lol...

so sorry you're having so much pain. hope your doc come back from vacation soon...


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## williampwilkins (Sep 4, 2016)

Do you know of anyone who's had botox injections for anismus and found it successful on this forum?


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## annie7 (Aug 16, 2002)

yes we've had posts about it. here is one success story. you can do a board search to look for others.

http://www.ibsgroup.org/forums/topic/162885-botox-for-ibs-c/?hl=botox

also--more for info on the procedure:

http://www.ibsgroup.org/forums/topic/92283-my-experiences-with-botox-and-starr/?hl=botox

i've also read botox success stories on the Inspire forum (AGMD GI motility disorders support forum)


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## williampwilkins (Sep 4, 2016)

Thought I shouldd post here and update this: Turns out i actually have Crohn's of the small bowel. Doctors were just too lazy to bother checking there instead of just my colon.

Full story here: http://www.ibsgroup.org/forums/topic/332554-misdiagnosed/


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