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Sh*t Happens!

Hello,

I am a newbie, so I thought I would introduce myself.

I have read with great interest lots of your posts and I must say you really are an inspirational bunch!

Well where do I start? I am worried about "oversharing" but everyone else is searingly honest so here goes!

I have always had a funny tummy, as a child I was dreadfully constipated and this was deemed to be due to my parents being divorced so we got sent to dreadful family therapy groups to discuss "my issues". (You know the ones with grubby rooms and two way mirrors - endless silences and a tangible air of desperation in the room which seemed to be mainly coming from the professionals).

Personally I don't think I had issues, I was well aware that life with mum was infinitely better than with an unreliable dad around. (Don't get me wrong, I dont think Psychologists are quacks - I have two psychology degrees! I just dont think I had issues!)

Then when I was 21 I came down with some kind of evil stomach bug and was hospitalised. After an endoscopy I was diagnosed with celiac disease. Being 21 I thought I was totally indestructable and so a few years of abusing my body with pizza ensued with obvious side effects.

What changed was when I had my kids. We struggled for four years to have a child - I could get pregnant, I just couldnt stay pregnant. When I finally got past the 12 week mark with Thomas I was the healthiest gluten free eater you have ever met. I was blessed with a blissful pregnancy, and a huge healthy bundle of joy. I had barely finished breastfeeding when I fell pregnant with Paddy. Paddy turned our lives upside down!

Paddy was premature and desperately sick, if anyone so much as farted near him his lungs would collapse, and we spent his first three years in hospital. They decided he had gasto-oesophageal reflux disease. Basically this is the worst acid you can get, the acid was coming up and going into his lungs, burning holes in them. He had an op to tie a knot in the top of his stomach and immediately his lung disease improved - yey!

Unfortunately then came the poo... he pooed every ten minutes, everything that went in came straight out again, he ended up being tube fed for a year because he was so thin, and after many more operations and investigations we are now managing what has been diagnosed as allergic colitis. Nowadays he has a very special diet including complete nutritions, has to eat every hour, and continues to have diarhoea ALL the time, with lots of blood...

You think this story is about Paddy don't you..it's not... but I think Paddy could be relevant. In the past I have researched Crohns and UC wondering if this could be what Paddy suffers with, but his last colonoscopy showed bleeding and inflammation, but not Crohn's.

Back to me then... in May, I got an evil tummy bug. (Overharing alert). I had been in a meeting at work, and as I left the office I felt a suspicious crampy grumble in my tum.... you guys probably know more than most know how it is when you just know you need to get to a loo and quick. There was no way I was going to assualt the toilets in the office, (I hate poo stand off - you know when you sit in the cubicle praying the toilets have emptied and no one will know it was you that just murdered the facilities) so I jumped in my car - I only live ten minutes from the office. At the risk of grossing you out, I didn't make it home. I blame a dithering cyclist at the lights round the corner from my place. I was so close to home it was untrue. Suffice to say it will be a long time before I have the nerve to put on the heated seats in my car.:eek:

Thank god I was wearing tights and there was no one in the street when I went in, but as I got in the door I started to vomit all over the place. Then I fainted and my wonderful husband swooped into action on a major clear up operation (me, the car, our hallway, the bathroom, all my clothes). He's a paramedic (how lucky am I?) But I was still utterly humiliated at the state I had got into. As I lay sweating on the bed in a pair of his pants (his idea - better capture for any follow-on activity), I wailed at the fact that he was cleaning up my poo. He said, "don't worry I deal with sh*t every day". I cried "But this is MY sh*t!"

Well, although the violence of the tummy bug subsided, it just wouldnt go away. After eight weeks I had got to the stage where I was refusing to eat if I had to go anywhere, and was generally avoiding any non-essential journeys...

Also, I was TOTALLY exhausted. I haven't been working but couldnt fathom my new requirement for afternoon naps. The housework was piling up and I seemed to be completely unable to cope with even the most menial daily tasks. I thought I was going nuts - I was totally useless.

Finally my mum's nagging got the better of me, she had seen me dart off to the bathroom 15 times in an afternoon. (Has anyone else developed the juvenile habit of clutching their bottom as they make the frantic dash - like it makes any difference - I must curb that behaviour in public). So after an allnighter in the bathroom I made an appointment at the Dr's. To be honest I needed to do something because it was getting a bit shirty at home between Paddy and I. We only have one bathroom, and we had both had accidents waiting on each other to finish visits.

My GP is a legend - the most lovely man you could meet - he has been amazing with Paddy over the years. He had a prod and a poke.. including rectal:eek2:

Then he said my blood pressure was a bit high. I pointed out that his BP would be high too if someone had just inserted a digit in his butt. He immediately said he suspected Crohn's and sent me off for some blood tests and a poop sample.

Poop came back with no infection and I was gutted - I had been hoping for a dose of bacteria which would be cured with a short course of antibiotics. What the bloods showed though was a B12 deficency, and elevated inflammation. So he sent me off to a Gasto Consultant who booked me in for Endoscopy and Colonoscopy. Amazing speed - I saw this guy on Wednesday and had the procedure done on the Friday. It wasnt as bad as I expected, although the bowel cleansing ritual wasnt great fun. An hour after the procedure the consultant came to see me and told me I have Crohn's and gave me Entocort to start taking.

So I have been on Entocort for about a week now and I am hoping for an amazing improvement.... no sight of it yet, another accident in the car yesterday, and fell asleep in a puddle of my own drool on the sofa in the afternoon - I have no class any more!

I am seeing the Gastro guy next week to discuss next steps, and my GP has given me a leaflet, but I have learnt so much from this site. The week after Paddy is seeing his Gastro guy so I am going to let him know about me in case it sheds any light on my little poop monster of a son.

I believe I have mild Crohn's, and I suppose what worries me is, if mild Crohn's can be so debilitating what if it gets worse? I start a new job in September and I am praying I can get my bum under control by then! I haven't told my new employer yet - thats gonna be a fun conversation.

I had to sign on at the job centre yesterday (redundant - I am sure the stress of that experience contributed to the Crohn's flare up). The advisor told me I had to commit to travelling up to an hour on public transport for any available job. I told her it was impossible becuase of the Crohn's so she brought up a screen entitled "barriers to work" and ticked the "incontinence" box. Yes, I know it's true - I have just admitted to you guys that I can be spectactularly incontinent, but to have a stranger tick it on a box - I could have cried!

Ah well, as I said in the title, Sh*t Happens! In a way it's kind of a relief to be diagnosed with Crohn's, I have felt ill for so long, and guilty for being so incapable of doing anything - although I am still having funky days, I dont feel so bad about it now.

If anyone has any tips for me - I would be really grateful!

Thanks for listening and sorry for oversharing - it's been quite cathartic to get it all out!

Off to spend quality time in my bathroom now!

Lishyloo x
 
:welcome: Lishyloo, I think we've all BTDT with accidents and the like. As for tips... read this site and ummm inwardly digest I suppose :ylol2:
 
Hi Lishyloo, welcome to the forum. Stress and crohns don't mixed very well and it seems that you've had an awful lot of stress, especially with Paddy.
I've got the "incontinence" box well and truly ticked at work, in fact it's a good marker to ensure you're covered by the Disability Discrimination Act (DDA). Not sure how that works with brand new employers, but you may wish to research the DDA... just so you know!
 

My Butt Hurts

Squeals-a-lot!
Hi Lishyloo - welcome to the forum!
How old are your babies now? Hopefully the entocort will kick in quickly for you. When you aren't flaring, your incontinence should go away hopefully. I was crapping my pants last summer, and now so close to remission I haven't in quite a while.
Good luck with you appt next week.
 
Jeeeezzz Lishyloo! I feel for you girl....you have been through a lot. Your family sounds wonderful and my hat goes off to your husband for helping you the way he does. If there was any doubt as to wether or not he loves you I think you know now he does very much. Love kicks in during the bad times. I wish the best of luck for you and your family and I hope things with Paddy begin to improve. :ylol2:

Are you having any problems with insomnia on the Entocort? I had to stop taking it due to that side affect.
 
Thanks for the welcome!

:) Wow! Thanks all for your warm welcomes - I feel like a part of the community already!

I will definitely look into DDA, was also checking out the Blue Badge scheme for urgent calls of nature now that there of two us in the car needing them! Luckily we already have a radar key for Paddy so no queueing for public facilties!

My babies are not really babies any more! Paddy is 8 and Tom is 9 now! But Paddy will ALWAYS be my baby!

Re the Entocort - no problems with insomnia at all - still snoring on the sofa at regular intervals, however I do have a heart condition and take some pretty strong stuff for that just before bed so I think I would need rocket fuel to keep me awake at night!

I'm looking forward to remission and getting my life back for a while!

Thanks everyone!

Lishyloo x
 

fenway1971

Sports Crohnie
Hi Lishyloo -
Welcome to the group. We're an odd but helpful bunch. Quite a story - and hope Paddy recovers soon too!
 

fenway1971

Sports Crohnie
vshirey317 said:
On this board? Never!
You've got that right. Glad you shared your story...you have a way with words and I hope the meds get you back on track. Keep us posted on lil paddy!
 
There's no oversharing here my dear. And you are quite funny! Hope things begin to start improving for you soon. Welcome to the forum!
 
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