My story so far and its so hard to continue on....

Hi Everyone,

This is very hard for me. So here goes... in an ideal world i would get a response like: "oh my gosh thats exactly what happened to me and this is how i got better...". But that is unlikely.

4 years ago i started running to lose weight as i was about 17 stone (i am 6ft3 also, so am a big lad lol). When i started exercising i got constipated, so started taking laxtives (on and off) to help my bowel movements. I done this for roughly 4 months, at that point i thought it was getting out of hand so i stopped taking them and just handled the constipation.

For the last 3 years i have had faecal urgency and diarrhoea EVERYDAY. At first it was just the morning and was very gradual. When i get up at 7am, i have to go straight to the toilet to empty my bowels. I was usually ok for the rest of the day.

My symptoms then get progressively worse. Every morning i need to stop at the tesco 2 miles from my house to goto the toilet cos i can't last the journey to work. At this point i decided to try and take something to help me. I trawled the Internet and i tried the following:

• Acidophilius capsules- these started to have an effect for a few months. But I grew tolerant to them.
• Calcium- no effect.
• IBS tablets from Tesco- no effect
• Fybogel sachets- made my symptoms worse
• Psyllium Husk- no effect
• Loperamide- This started working for me. Then my body became more and more tolerant to this and eventually it had no effect
• I have tried cutting out dairy and wheat at different time. No effect.

At this point, I was sort of losing the will to be honest! I cant travel on buses as they don’t have toilets. When I travel on the motorway sometimes I need to stop at the hard shoulder and do the toilet by the road!!!
I then decided “enough is enough”- I need to goto a doctor.

After 3 years of all these symptoms I finally went to the doctors. Embarrassed. Drained. I didn’t mention the laxitives that I mentioned at the start as I didn’t want to introduce a red herring and for just to put it on that.
He initially did a prostate exam which came back fine. I done a faeces sample and a blood sample to apparently check for Crohn's disease and other conditions. They all came back negative. The GP has given me lomotil (Diphenoxylate and Atropine), which is SORT OF working. When I take it, I can have normal bowel movements for like 3 days. Then on the 3rd day I go back to runney bowel movement again!
The GP has referred me to a gastroenterologist on 13th Nov.

I am just getting to the end of this. I really can’t do it anymore. My fear is if the specialist does the scopes and other tests and doesn’t find anything and just puts it down to IBS.

I hope someone can give me some feedback or opinions…

Hi, welcome to the forum!

Are you having symptoms other than the frequent BMs? Pain, nausea, fatigue, anything at all? Any rectal bleeding? Other than wheat and dairy, have you tried cutting anything else from your diet? Have you noticed that anything in particular makes things worse?

SarahBear said:

Hi, welcome to the forum!

Are you having symptoms other than the frequent BMs? Pain, nausea, fatigue, anything at all? Any rectal bleeding? Other than wheat and dairy, have you tried cutting anything else from your diet? Have you noticed that anything in particular makes things worse?

Click to expand...

Hi!

Thanks for getting back so quickly! I suffer from fatigue but not sure if that's just from me working! No rectal bleeding... I have tried cutting all sorts (one at a time) to see if there are any difference-nope! Nothing in particular makes me worse, it's just constantly bad- sorry to be graphic but my bowel movements are like a playdo consistency. The urgency get unbareable. If I feel I need a bowel movement, I need to go within a couple of minutes. Sometimes I have to run! If it wasn't so embarrassing it would be funny!!!

Hello and welcome to the forum

Whilst not the most pleasant of things it is good to see you getting a colonoscopy so they can have a look at what is going on inside, usually biopsies get taken as this can help towards a definitive diagnosis. A blood test can certainly not give a definite yes or no on whether you have something like crohn's but can check to see if there is any inflammation going on in the body. You may find the GI doc also orders a few other tests as the scope can only reach roughly as far as where the colon meets the small intestine and if the problem is 'higher' up they will not see it. Hopefully though they will be able to get some answers for you soon.

Please keep us updated on how you get on.

AB
xx

had_enough1980uk said:

Hi Everyone,

This is very hard for me. So here goes... in an ideal world i would get a response like: "oh my gosh thats exactly what happened to me and this is how i got better...". But that is unlikely.

…

Click to expand...

I CAN say oh my gosh that's exactly what happened to me LOL but I'm not better yet. I have found a doctor who is helping manage the diarrhea, cramping and pain (somewhat) but no cause has been found yet. All of my testing and scopes have been normal. I currently take levbid, lomotil, and amitriptaline and just started a 10 day course of xifaxan. I have seen a slight improvement. I hope you find some answers and some relief!

So much sounds familiar. Whatever mine is, it started in about '83. Recently I substituted Almond milk for real milk - some improvement. The rest of my diet is pretty bland with rice, well cooked vegis, baked chicken(small portion breast) and pealed fruit. I just started trying humus in very little portions - not bad yet; sounds like it would taste bad but it is actually pretty good stuff. The one thing a doctor suggested years ago is Metimucil - it has been huge benefit - one teaspoon in water twice a day. It could make you a little gassy so break into it slowly.

Best of luck to you- hang in there.

edit: and vitamins A & D, probably will add more later.

Metamucil is Psyllium Husk? I have tried that with no effect...

The hard thing is that as a job i work at repairing and servicing the very endoscopy equipment that will be used on me. I hear people in discomfort every day.

Even just the prostate examination was VERY uncomfortable.

Thanks for everyones reply's, its much appreciated!

What works well for me for loose stool is cholestryamine.

Since I had my ileostomy reversal my stool is not normal and the urgency can be unnerving to say the least. When I returned to work I needed to control this to some degree. The cholestryamine helps a lot.

It is fairly harmless and even beneficial in other respects. It does reduce cholesterol as that was its original use. Not something I wanted to do, but not terribly worrying either.

Good luck

Dan

Be upfront with your Dr on the laxative use. When I worked for a GI Dr he never recommended those for patients. A stool softner yes- laxatives no.

I think it could cause some on the problems you are feeling. Also with a family full of runners- add even more water into your diet- it helps things move along.

Scopes are not so bad. You are medicated so you really wont be aware of whats going on.


Lauren

I remember my dad had bowel problems before he died (he died of lung cancer). I asked the GP if that could be related, and he said no. I also asked if I should find out what bowel problems it exactly was, and again he said no! I remember my dad always saying he didn't want to be too far far away from a toilet! Which sounds familiar!!

Really feel for you, I hid those symptoms for over 2 years till I keeled over I was so weak! Very glad you went to the doctor. The scopes really aren't that bad, I have had 2 Sigmoidoscopies and 4 Colonoscopies, I was sedated for them and honestly don't remember anything about them, they are well worth it to get a diagnosis. I agree a blood test alone cannot tell you if you have Crohns or Ulcerative Colitis. Although after initial tests I was started on treatment for Crohns they did not give me a definite diagnosis for a further 2 years, after more scopes and a barium meal. Iam surprised the GP wasn't interested in your Dads problems, my GI doctor wanted to know all about family history of any bowel problems, 8 years after me being diagnosed my sister has just been told she has Crohns, so it can run in the family. I really hope you get some answers and start getting better, I understand how embarrassing the symptoms can be, I was only 19 when mine started and couldn't bring myself to tell anyone.

Diet wise I haven't really found anything that bothers me apart from really greasy food which I avoid and alcohol kills me, I'm still young so obviously still enjoy a night out with my friends but I limit my drinking to once every 4-6 months my insides just can't cope and I'm on the pan all the following day!

Your dads dx really won't lead them to a dx one way or the other

It can run in families but, there are many like me who is
the only known family member with IBD.

Your scopes should be able to tell you more. But remember
if you don't get the answer your looking for keep going back!


Lauren

Its pretty rare in the UK to be going under general anaesthetic for a sigmoidoscope/colonoscope (and even a gastroscope).

I suppose I need to go through these things to get to the bottom of it. As you said, the thing i am most worried about if they just come back with "you have IBS-D as we havnt found anything conclusive"

A dx of IBD would be conclusive. No one wants a dx
But, at least they can begin to treat you.

In the US they don't put you under for sigmoidoscopies,
they do medicate you for a colonoscopy and upper
endoscopies. By the time I had mine done i was in so
much pain I welcomed the meds!


Good luck

It really isn't that bad.



Lauren

Got my specialist appointment tomorrow...

Wishing you lots of luck hun, please let us know on how things go.

So the specialist referred me onto the endo unit to get a gastro and a colon.

That was today... The gastro was horrendous! I kept on gagging and wanted it over with straight away! The colonoscopy wasn't too bad, just abit uncomfortable.

On the report sheet they gave me it said "diagnosis: proctitis" which was found during the colonoscopy. The bowel nurse specialist afterward has prescribed me Mezavant 1.2g and Pentasa suppositories 1g. She explained that its more than likely to ulcerative colitis and steroids will help but I would be on these for the rest of my life.

Still need to pick up the prescription to see if they work. She said to try the suppositories for a week first to see if that works. Not sure if I am comfortable with doing that everyday for a week...

Still trying to take all this in... Anybody's thoughts/feedback would be much appreciated!!

Thanks for the update hun, I hope this meds can do the trick for you. I have not been Mezavant or suppositories but our sub forum for the 5-ASA's should have some helpful info for you: http://www.crohnsforum.com/forumdisplay.php?f=125.

Thanks, will post a thread in that section of the forum.

Cheers for your help