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Crohn's Disease Forum » Your Story » I'm New, My Story - Crohns and Prolapse


04-06-2011, 08:47 AM   #1
KitD
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I'm New, My Story - Crohns and Prolapse

Hi,

I have been diagnosed with crohns disease for about 5 years now. However it took the dr's almost 1 year to diagnose after many tests. They have found the crohns in my terminal illium which is quite common apparently.
Whilst waiting for the dr's to diagnose my condition I lost over 3 stone, I dropped to just 6 stone, was malnurished and had very achey and sore bones due to this, along with the other ailments that come hand in hand with crohns.

I've been on various different types of medication for this, but currently I am not on anything. However, I had surgery last year. The problem with having crohns caused my bowel to prolapse. I had a ball the size of a grapefruit pretruding from my back passage each time I tried to go to the toilet.

I tried telling dr's about this and eventually got to see my specialist nurse, after waiting a few weeks.....uncomfortable weeks! The nurse suggested I had piles, I told her the size and even showed her a picture as I didn't feel she quite understood. I was then referred to a surgeon.

After a number of embarrassing tests the surgeon confirmed my bowel had fully prolapsed and that I would need keyhole surgery to attach (staple) my bowel to my back bone. The surgeon also informed me this was not a permanent fix and that it would eventually prolapse again.

The surgery went well, and I was back in work after 2 weeks recovery. 1 month after the surgery my back was aching and feeling like something was tugging, very heavy also.

I called my nurses constantly, worried. They eventually got back to me and I asked for a follow up appointment to discuss my concerns and find out if it was normal. They got me an appointment, 2 months away, then, 2 weeks before the appointment wrote to me to say they had to cancel it!

2 months after the cancellation notice I am still waiting for it to be rearranged. Last week I was in agony with the same feeling of dragging and heaviness and also aching. I was also vomiting after I was eating. Worried I may cause more damage as I had not 'been' the toilet in 2 days I called my nurses over 15 times and left 3 voice messages and even emailed them. With no response I called my specialists dr's secretary who advised I would need to speak to the surgeons nurses instead! She very kindly chased this different nurse for me and they are now trying to re-arrange my appointment.

Sometimes I feel so alone and stuck with this problem. No one can answer my questions or re-assure me, and my close family worry so much as they cannot help either.

Has anybody else had a prolapsed bowel due to the crohns? I would love to be able to talk to someone who might understand?

Thanks

Kit
04-06-2011, 08:53 AM   #2
xJillx
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Hi Kit! I don't have any experience with a prolapsed bowel, but I wanted to welcome you to the forum. Also, I want to strongly encourage you to not give up and continue to be persistant! I am floored you haven't been able to get a hold of your doctor. If things continue to remain so bad or get worse, I wouldn't mess around. Get yourself to the ER!

I hope you can get in touch with your doctor soon and start to figure out what is going on. Please keep us posted.
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04-06-2011, 08:57 AM   #3
KitD
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Thanks Jill, very kind of you to welcome me.

Best Wishes
x
04-06-2011, 09:52 AM   #4
Crohn's 35
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HI Kit, I too have had resections of the Ileum but not prolapse. My first keyhole resection was good for 7 years, my second, it came back almost immediately and have suffered on and off, mostly on since 2003. I am avoiding a 3rd resection, and when I have my first bowel obstruction I will have it done. I know some of your pain, and no one should suffer, I think sometimes the doctors avoid us, because they are rubbing their heads too, wondering why it is so bad. Take care, glad you found us, keep us posted ok?
04-06-2011, 11:44 AM   #5
Astra
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Hiya Kit
and welcome

where are you?
Anywhere near me?

I find that totally unacceptable that they're not returning your calls or getting in touch.
Hope it's not at my hospital!
Anyway, you're no longer alone with this horrid disease, we're all here to support you.
lotsa luv
Joan xxx
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04-06-2011, 05:39 PM   #6
KitD
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Hi joan, yes not too far from you, I've just moved to liverpool from the wirral, the main hospital I get seen at is arrowe park. A lot of the staff are really nice and friendly just donr think they have the time or resources.
Thanks for replying
X
04-06-2011, 06:34 PM   #7
ameslouise
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Hi Kit and welcome!

No experience with prolapse, but just wanted to say that I think it's crap the way the dr's office is treating you. Can you get to see another GI? Can you go to the ER to get immediate care? It sounds like your situation is urgent and you shouldn't have to wait 2 more days, let alone 2 weeks or months!

Good luck - please keep us posted. Hope you get some relief soon!

- Amy
04-07-2011, 07:01 AM   #8
Astra
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Hiya Kit

Listen, you've got to get yourself over here to Whiston Hospital, the gastro dept is second to none, honest! No so far from you.
It is your right to choose your own hospital and specialist, you've just got to ask your GP, and he has to comply.

http://www.nhs.uk/choiceintheNHS/You...ahospital.aspx

good luck
xxx
04-10-2011, 12:29 AM   #9
crushingcrohns
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I just read your story and i'm so sorry you had to go through all of that which you had to bear. The waiting and not knowing and the worst part is the not knowing what you can do to help yourself. I know that feeling, the out of control feeling of not knowing wtf to do.
A suggestion for you is to find a good doctor. That really really matters so much how your quality of life will be. I think you've personally are waiting 2 long to see your doctor. Shame on them for taking 2 months to get you in!
Don't be just a number and do some research for yourself because it does matter and you'll also feel more confident and knowledgeable about your condition.

Best of luck to you.
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04-10-2011, 01:06 AM   #10
Keona
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Hey!
Im no expert but I think it is a red flag that you are vomiting after you eat. Every time I see the doctor and specialist, they tell me if I start vomiting after I eat, fever and pain then to call 911 (ambulance, fire and police)... personally, I'd likely take a cab but I get their sense of urgency.
I'm with everyone else... you deserve better and it is unacceptable that they havent followed up with you.
Hope you get some help soon!
WElCOME TO THE FORUM!!
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04-10-2011, 03:39 PM   #11
KitD
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Hi,
Thanks all for the advise. I have received my re-appointment letter.
Bear in mind I first asked for an appointment last year, they gave me January then they cancelled it, now, after nagging constantly I have another appointment for...........JULY!!!
????
I think it's gonna be a change of docs, maybe Whiston as Joan suggested?
Thanks again for the advice and the push to do something about it.
x
06-05-2011, 07:24 PM   #12
bonbonbowen
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Hi,
this is terrible, I thought it was only me who gets completely ignored by the Dr/hospital/nurse. Obviously I was wrong. The NHS don't seem to have a clue what they are doing any more (especially with IBD)
I was not diagnosed till I was 18, 7 years after my symptoms started. I was told I had depression/eating disorders and IBS despite my numerous times at the doctors. This impacted my education very much, and is now
impacting my employment- no one wants someone who is sick all the time GRRR! (sorry I don't know where that came from).
Anyway my rectum is prolapsing now and I've even started having accidents! I rang the hospital and they said its probably piles. Useless bunch of......
So I'm going to change hospital, perhaps you should look into this too, and go to a and e at that different (better) hospital.

Good Luck X
06-06-2011, 05:32 PM   #13
KitD
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Hi, sorry to hear that you are also experiencing a prolapse. I completely understand what you are going through and it is embarrassing, especially the questions they ask like 'is there any other activities going on down there' i.e. anal sex!! So embarrassing for someone.
I have moved house now so I am actually now closer to the 'better' hospital and will be asking to transfer this week
I do hope you get yourself seen and sorted. DO NOT LET THEM FOB YOU OFF BY SAYING IT IS PILES!! They tried this with me, and its very annoying, you know when something isn't right.
Let me know how your getting on.

Take care
xxx
06-06-2011, 05:48 PM   #14
bonbonbowen
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Thanks KitD, at least we're not alone in this. I went to hospital today and they have finally believed me about the prolapse (I showed them a lovely photo) and the dr said it defiantly was not piles. It's so annoying being fibbed off by nurses and staff who haven't got a clue. I'm not looking forward to the surgery for the prolapse, that's going to sting!

Stay strong! (to the point of being a nuisance to the doctors)

Toni x
06-06-2011, 06:00 PM   #15
KitD
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Dont panic about the op, its quite quick and is quite routine, even though it doesnt sound it!
I had minor keyhole surgery, 4 little scars that have healed lovely. You will be in bed for a day as the surgery is on your tummy. But after that you can move around, but dont lift anything for a few weeks.
They stapled my bowel to my back bone so it is now suspended instead of drooping. I feel fine now, the only thing I noticed is a slight tugging when my bowel is full, it just feels a little heavier than normal.
The op is not as scary as it sounds, I promise
xxx
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