Megacolon+Megarectum

MegaMama

New Member

Joined : Dec 2013

Posts : 3

Posted 12/9/2013 8:49 PM (GMT 0)

Hey there - I am uncertain whether I have posted in the right section, but in for a penny! Apologies in advance for this long post. Skip to the end if you like - I have a question :)

I was originally diagnosed with IBS twenty-one years ago after suffering with constipation (only) for a good ten years prior. It never went away despite adapting my diet, lifestyle etc. All the things that you are meant to do. I have been to A & E a few times due to being 'backed up' (once for over three week) whereby they just gave me an enema. The times I visited the doctor is more than I can remember and I couldn't help but think that they were labelling me as a hypochondriac. The only things they gave me was laxatives and advice to eat more fibre. So, basically I suffered. A lot.

It wasn't until this year that I had surgery for what was then a suspected gallbladder infection. Long story short, what should have been relatively routine turned out to be a major turning point in my life. They found a few worrying things and managed to resolve some of them however, it was noted that I had a very long descending colon and extensive adhesions despite never having surgery.

So, after a colonoscopy and transit studies tests (amongst others), I have been diagnosed with megacolon, megarectum, slow transit and a rectal prolapse :( My consultant has said that as my colon and rectum are very large (one of the largest he has seen) it has to go. Hopefully, he may be able to save the rectum. I am having biofeedback and he has prescribed Resolor to see how it goes. I also have coloplast enemas to do (which doesn't shift it).

I have three options (which will be decided in March 2014). The first is to remove the colon and attach it to my rectum (pending on how the above goes). The second is an illeostomy with j-pouch (??). The third is complete removal of the colon and rectum and have a stoma.

To be frank, when I was advised what is wrong with me I felt three different emotions. Firstly, I was (and still am) angry that I had been dismissed/ignored by doctors (my consultant is the only one I will trust now as he did actually save my life). I then felt relief. Relief that I am going to be okay and relief that I am now believed. And finally, anxiety - which I suppose is understandable.

I hope that some of you can relate to this post. Much is misunderstood about IBS and the medical profession seem to 'pigeon hole' people.

Which leads me to my question - do any of you fine members have to take Resolor? How are you getting along with it? I have only been taking it for four days and feel like hell (not really doing anything, sickness, dizziness, hot flushes and palpitations).

Also, did you end up getting a different diagnosis from your original IBS? I would be really interested to hear :)

Many thanks for reading :)

kate-iona

New Member

Joined : Dec 2013

Posts : 2

Posted 12/19/2013 2:19 AM (GMT 0)

Hello! Hi, I'm new to this forum but am so so glad I found your post as I have been taking Resolor for 2 weeks now...

I have tried everything before taking Resolor - movicol, fibre gel, macrogol, ex lax, senna, lots of enemas and during my most recent hospital trip I had 4 or 5 doses of picolax and 5 jugs of Klean-prep (normally given to prep bowel before colonoscopy) and none of this worked AT ALL!
I've had countless X-rays which showed an impacted bowel literally full to the brim, also ultrasound and a ct scan which just showed distension in the bowel loops..

I was always told from about the age of 11 that I 'probably' had IBS, was then later diagnosed with polycystic ovarian syndrome and my distended stomach was blamed on that. Bowel problems run in my family (my mum was just like me and ended up with bowel cancer and my uncle had crohn's) so my mum and I just knew something wasn't right, she requested I see her own consultant as he is the only one she trusts, and have now been eventually diagnosed with chronic constipation and possible colonic dysmotility - started me on a Resolor to try get me moving - from what others on here have posted about this medication and the way my doctor described it to me, it seems to work straight away, and give violent headache, cramps and diarrhoea!

I have been taking it almost 2 weeks now, for the first 4 days I had no bowel movement with it nor any unusual pains however I did get heart palpitations (since found out this is an uncommon side effect) and also nausea/dizziness and hot flushes too... then it started to help somewhat for a few days and I actually went to the toilet about 4 times which was like a dream come true! my stomach seemed a lot less distended, however now it seems to have slowed down rather a lot and I haven't had any movement at all for 4 days even with this tablet, although I've noticed I've been getting bad stomach pains more frequently :/ not really sure what to make of it all!
I've only seen lots of success stories and it's left me feeling abit disheartened and wondering what will happen next - especially as my specialist described it as some kind of miracle cure-all drug!

I'm awaiting a colonoscopy when my bowels have cleared out enough to do so and also a transit study to determine just how slow my bowels are - but I'm in the UK and the NHS are painfully slow at getting the ball rolling with things like this! Been told that surgery may be an option but only when all other options have been explored.

I just think that because I'm so young nobody is taking my problems seriously and because it is inside my body (apart from the pregnant looking distended belly) they think there is nothing wrong with me. I'm sick of being given disgusted looks and rudely being asked outright if I'm pregnant or even when I'm due! Even some of the doctors I have seen have been convinced I was pregant! I feel like it is taking over my life as I can't eat or drink properly, I'm in constant pain and feeling sick and it's starting to affect my work and there's only so much time I can take off sick!

Thanks

Kate x

Post Edited (kate-iona) : 12/18/2013 7:23:00 PM (GMT-7)

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