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04-18-2013, 02:02 PM   #1
Chocs
 
Join Date: Apr 2013
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Hi there :)

Hi,

I'm just starting being tested for IBD amongst other things and mostly right now I'm scared and worried and I found myself at this forum.

This may be quite jumbled up so I apologise for this in advance lol. My Dr phoned today with some of the results of my blood test that I had yesterday. My blood count is low, my liver and kidney function are ok, we're still waiting on my iron levels and celiac screening. I also did a stool sample and we're waiting for that too, oh also my crp and esf? levels were slightly raised indicating inflammation. She's referring me to the surgical people for further testing which I assume to be a colonoscopy.

My symptoms are about 9 months ago I had a change in my bowel movements, they increased in frequency, before I could have a normal bm about every 2-3 days, I went to going 2-3 times a day, a lot softer and very gassy and mucousy. When I needed to go I had to run! Sometimes I wasn't quick enough and I always struggle to hold it. I also had bleeding and quite often while I'm having a movement of just gas I'm pushing something down and not quite out, I believe this to be piles, I've had them with both my pregnancies and in fact 6 years ago after the birth of my first it took a year and a half for the bleeding with movements to stop. 2 years ago after the birth of my second the same thing happened again so when I had this reappear last year I thought it was a just a flare up, I went to the Dr told her all my symptoms, she did a exam with her finger and said she believed it to be IBS and to go back if it didn't improve. When she did the exam she couldn't feel the pile but she told me they could be high up.

Fast forward to 2 weeks ago when I had a contraceptive pill check and the nurse commented I had lost weight, the problem is that a year before I don't remember being weighed and I suspect I just told her what I thought I weighed but I never actually weigh myself so it was just guesswork really but this prompted me to go back to the Dr, also add in the fact my Mum passed away from breast cancer last year and I was a little freaked out.

Since my Dr visit last year my symptoms have actually improved, I go about twice a day and they are pretty soft, I still have the blood but I can still also feel what I believe to be the pile trying to escape lol. I'm still pretty gassy and there's always some mucous more often than not bloody, the Dr this time also did an exam and said she couldn't feel any mass and when I spoke to her on the phone today I think she's leaning towards IBD which she talked about last week and I hadn't really heard of before as I just thought it was IBS. She did say that she wasn't saying it was cancer but they like to start with the worst case and then rule out things from there and from playing at Dr Google the past few weeks (why do we do that?) it seems my symptoms fit the bill for several things, also I forgot to add that my Mum also had a stool screening and had a procedure done where it was found she had a polyp so it was removed and tested and it was found that the end not attached was pre-cancerous so based on some of my symptoms and my Mum they want to rule this out.

Right now I'm scared, worried, terrified that it could be cancer mainly because it ended so badly for my Mum so to me it means the end of the world, but I'm thinking the results I've had so far are pointing more at UC? I've also always been a bit anaemic my entire life lol and I'm thinking that the bleeding could be from my pile that never has a chance to get better due to my frequent visits to the toilet and this is what might be causing the low blood count. Anyone else here has lots of problems with piles? I guess I'm just wanting to hear if anyone else has a similar story to me or what you all think really with your experiance with IBD and it's many symptoms.

Thanks for reading, sorry for the novel but it's really helped to just get it all out there.
04-18-2013, 02:42 PM   #2
bozzylozzy
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Hi chocs - welcome to the clan! Though im sorry to hear that you're having to go through all this.

Your doctor seems on the ball by checking yoir bloods first and referring you for more tests. I know it sounds scary that they want to rule out cancer, especially with what happened to your mum. But hopefully you can have the colonoscopy soon even if to just put your mind at rest.

If you ever have any questions or just want to vent - we are here for you
Is there any family history of IBD in your family?

Unfortunately I had piles during and following pregnancy.. which has now become a skin tag. But I know piles can be internal or external xx
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04-18-2013, 02:46 PM   #3
Cat-a-Tonic
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Hi Chocs, welcome to the forum. First of all, and I know this is easier said than done, but try not to worry too much about cancer. It's a scary word that doctors like to throw around way too much. Just before I had my first colonoscopy, my doctor said, "It would be very unlikely for someone your age to have colon cancer." I hadn't even been thinking about cancer, but just him saying the "C" word got me worried! And then awhile later, they found "nodules" on my liver during a CT scan, and told me that it could be cancer but probably wasn't - they then made me wait 6 months for an MRI of my liver to get a closer look! (Fortunately it's not cancer on my liver, but that was a long wait to find out for sure.) So I totally understand, doctors seem to love to throw that word around, and it can really get to you. But honestly, the best thing you can do is put that out of your head and try not to worry about it. Because honestly it probably isn't that.

Letting Google be your "doctor" isn't the best idea ever, simply because you tend to only find horror stories (nobody really writes about the good things) when you google a particular condition. You'll find some horror stories here on the forum too, so take everything with a grain of salt. You'll of course find some positive, non-horrific stories here too, so try to focus on those.

I wish you luck with the colonoscopy - make sure they take lots of biopsies, as certain types of IBD (such as microscopic colitis) can only be seen on biopsy.

Oh, and yes, I've had hemorrhoids, so I can relate. There are two types, internal and external - it sounds like yours are internal. Mine were external, so they didn't really bleed but they did hurt quite a bit. My understanding is that the internal ones don't hurt as much but do bleed. When you pass blood, is it bright red, or is it dark/black? If it's bright red, then it probably is from the hemmies. Your GP may be able to prescribe you some type of suppository or enema to help with the hemmies.
04-18-2013, 02:50 PM   #4
Chocs
 
Join Date: Apr 2013
Location: Cambridge, UK
Thanks bozzylozzy, yes my hospital appointment should be within the next 2 weeks and no as far as I know there are no cases of IBD in my family. I do have a cousin on my Dad's side that was diagnosed I think about 11 years ago with celiac and my niece was just diagnosed a month ago with it too. Yes my piles have always been internal and not really painful just annoying really lol.
04-18-2013, 02:55 PM   #5
Chocs
 
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Hi Cat-a-Tonic, the blood is a beautiful bright red so I know it's fresh and no they don't hurt. Thanks for the pep talk about cancer, even on the Macmillan website it says most o fmy symptoms at my age are more due to piles and IBD and IBS than they would be to cancer. Does everything I've said so far symptom wise sound quite typical for IBD? I can read up on various websites till my fingers drop off and they all say much the same but getting it from people that are actually dealing with it is more reassuring for me.
04-18-2013, 03:01 PM   #6
bozzylozzy
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The symptoms definitely could be related to IBD.. especially as your CRP amd ESR indicate inflammation. Did they tell you the exact numbers they came back as?
But.. again.. let them do more tests first before getting too caught up in the potential diagnosis.. (easier said then done)

But yes, the blood and mucous, bowel urgency etc can be linked to IBD.. I get the bowel urgency.. feeling sick too.. and I hate that! (Especially when you dont make it to the loo in time)
04-18-2013, 03:10 PM   #7
Cat-a-Tonic
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Chocs, it's so hard to say what's typical and what isn't. IBD is a little bit different for everyone - some people bleed and some don't, some get diarrhea while others get constipation and a few people get no change in bowel habits, some people lose weight and others don't, some have terrible pain and some have mild or no pain, etc. Because everyone is so different, it's sometimes really difficult to diagnose. I'm in that boat myself, I don't fit all the "textbook" symptoms myself either, so I'm still technically undiagnosed myself. It's frustrating! So, long story short, your symptoms sound like they could be IBD, but it could be any number of other things too. Having the colonoscopy will hopefully shed some light on things.

You mentioned having some family members with Celiac disease, and you also mentioned having the blood test for Celiac. That blood test is notoriously not very accurate. Are they going to do an upper endoscopy on you when they do the colonoscopy? That is the best way to test for Celiac, have an upper endoscopy with biopsies - that's the gold standard. I would definitely ask about that. Even if it turns out you don't have Celiac, it's a good thing to rule out - and if you do have it, it's easily treated with diet.
04-18-2013, 03:15 PM   #8
Chocs
 
Join Date: Apr 2013
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The CRP was 16 and I can't remember the ESR I'm afraid, I have no idea if I will be having more testing for the celiac but I will bear that in mind when I find out the results for that too, thanks for that
04-22-2013, 10:25 AM   #9
Chocs
 
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Hi, it's been a bit of a stressful weekend, each day I'm just feeling more negative about everything. I phoned the Dr's to see if they had the rest of my results and she went through them again, my blood count was about 9.7 so just under the normal and I asked if that was bad and she said it's really minor and my iron count was bad and that was just under and to be expected I suppose with the result of the hemoglobin being just under. My celiac test came back as normal. Is this small amount of blood loss typical in IBD cases? I'm also wondering if some of this can be attributed to my piles? I know that I'm clutching at straws but I really need to refocus my mind that what's happening really could be just down to IBD and not neccesarily something worse.
04-22-2013, 10:41 AM   #10
Cat-a-Tonic
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With regards to blood loss - what my GI told me was, it varies depending on the type of IBD. People with UC do tend to bleed. People with Crohn's may or may not bleed, it varies person to person. People with microscopic colitis tend not to bleed. So you could have something like Crohn's or MC if you're not a bleeder or are a mild bleeder (or are bleeding from something like hemmies, as opposed to bleeding from something like internal ulcers). As I said before, when you have the colonoscopy, just make sure that they take a lot of biopsies. Things like Microscopic Colitis can only be seen on biopsy, so biopsies could mean the difference between you getting a diagnosis or not. Do you have the colonoscopy scheduled yet? I hope it doesn't take too long to get that appointment. Good luck!
04-22-2013, 12:48 PM   #11
Chocs
 
Join Date: Apr 2013
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Hi, my hospital appointment is in May but I'm not sure what it will entail as apparently I'm awaiting info from that dept. I did ask for a Dr to phone me back so I could talk some more and she did today which was nice and she said it's because I've been bleeding for a while as shown by my anemia even tho I've been anemic in the past that I've been referred so not as a result of all the tests like I've been worrying. I did ask if the results also still point to IBD and she said yes but the investigation at the hospital is still the same in both cases. Also I can't remember how we got there but we talked about my piles and she did say that it may even be chronically bleeding piles that are causing the anemia, this had crossed my mind but I wasn't sure if this was an option but I think due to my history with them it's definitely something to consider isn't it? Now just to try and keep myself from losing it until a week on Thursday
04-22-2013, 05:23 PM   #12
dannysmom
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Hi. I am sorry to hear about your mother, and also sorry you feel so stressed. I'd like to say try and relax, or take your mind off it as much as possible, until your appointment ... but I know that is hard. I hope you get some answers.
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04-22-2013, 05:37 PM   #13
nitty
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Hi!
Just seen your thread.

Your symptoms sound almost exactly like mine were, and I had the same fears as you, too.
At first sight with a proctoscope it was thought I had ulcerative colitis, and the symptoms suggested that, too. I then had a colonoscopy which concluded that I had Crohn's Colitis, as the affected parts of colon were clearly separated by healthy tissue. As far as I know the disease is currently only in the colon.
After a few different treatments I am now settled on Mesavant and Azathioprine and am pretty much back to normal, apart from going to the loo a little more often than I did before (1-3 times a day, as opposed to once every one or two days).
05-21-2013, 01:35 PM   #14
Chocs
 
Join Date: Apr 2013
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Hi, so I thought I would come back and update. Yesterday I had my colonoscopy which I don't remember at all as the sedative appeared to work really well I have ulcerative colitis and he took 3 biopsies. The only thing is that he didn't go all the way round the colon, he stopped at the splenic flexure due to severe colitis. He did say that he found no tumours or polyps and that it wasn't cancer but if he didn't go all the way round the colon I don't know how he can be so sure? So now I'm referred to the gastro dept to start my medication and so now I wait again
05-21-2013, 03:20 PM   #15
Cat-a-Tonic
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Congratulations and condolences on getting a diagnosis! I hope you can get on some meds that work really well for you and that you feel lots better very soon.
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