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Crohn's Disease Forum » General IBD Discussion » Please help... upset, frustrated and very confused


01-08-2013, 12:42 PM   #1
xSophiexx
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Please help... upset, frustrated and very confused

So today i had a second Colonoscopy to see if infliximab has worked on me. In March my Colonoscopy showed SEVERE inflammation in there TI an MRI also showed stricture in those area. Other parts showed ulcers etc but TI been the main issue.
So since then re symptoms i have seen ZERO improvement still passing blood, several urgent watery bm a day and LRQ pain.
Now the Colonoscopy today has shown slight erythema in rectum and sigmoid (basically nothing) and other than a "wide open ICV" NO inflammation in the TI.
Im now verye stressed frustrated and confused
A) what is a wide open ICV - Im guessing ileo caecal valve but could this be causing symptoms?
B) why are the symptoms the same even though no inflammation???

So upset cried all through procedure lol as feel this is another step backwards - ANY help would be great.
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Diagnosed CD May 2012
Ileum and Jejunum

Ileocaecal Resection 12th June 2013

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01-08-2013, 12:46 PM   #2
xSophiexx
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ALSO ....
CRP has gone up over last few months!?
01-08-2013, 01:52 PM   #3
Ihurt
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Sorrry you are having a tough time of it. I have not been diagnosed yet, but from everything I am reading and also from being chronically sick for the last 9 years I can say one thing for certain, Doctors do NOT know anything!!!! I think the more I read up on this disease and other chronic diseases, the one thing I am really seeing a lot of is that doctors do not seem to really know what this is. I mean I think maybe there may even be more than one disease( IBD, crohns, etc,,,) that can cause bowel inflammation and issues. I honestly do not think they know.

Also is it possible that whatever is attacking your intestines is no longer attacking your TI at this time which is why they did not see it on the colonoscopy. Also, there could be micrpscopic inflammation that they did not see on the scope. Did they take biopsies?
01-08-2013, 01:56 PM   #4
Terriernut
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What is your CRP now Sophie?

The 'wide open' valve could certainly be causing diarrhea. I'm also wondering if they got all the way to your TI? Not an easy task.
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DX Crohns Feb 2011, symtoms 1997, 2009 and then WHAM! Emergency surgery for perforated sigmoid, fistula through fallopian tube, septic and near dead: Colostomy-Stan was born 22/12/10. Another parastomal hernia, his name is Ollie and he is MONSTER size!
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01-08-2013, 01:58 PM   #5
xSophiexx
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Thanks Ihurt i completely agree doctors dont really know what theyre on about i even had to tell the 'specialist' that a Sigmoid endoscopy wouldnt see my problem area!
No they didn't take biopsies which is frustrating also.. As you said potentially there could be underlying issues.. im also guessing i could have issues in small bowel?! Although MRI suggested otherwise. It just feels like im back at square 1 with unexplainable uncontrollable symptoms and i swear if the nurse says IBS one more time!! Thank you for your reply i just feel so deflated and lost now and fed up with being ill.
Anyone know about the wide open ICV?!
01-08-2013, 02:02 PM   #6
xSophiexx
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Terriernut just saw your reply well its gone from <1 to 36 in a short space of time - its never been massively high i think when i was admitted to hospital it was 45 and that was when i had severe inflammation.
From what ive read the valve is meant to be shut but mines wide open - what im worried about is they may say this is why i still have D and they Cant fix it. Theres so many different possibilities and im soooo frustrated because to them it must look as though im in remission when ive never felt worse
01-08-2013, 02:04 PM   #7
xSophiexx
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Sorry Terriernut the nurse said ahead got in my TI about 20cm and looked fine whereas last time it was like a crime scene in there. so frustrated!!
01-08-2013, 02:11 PM   #8
Terriernut
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You need to be seen by someone else! 36 is quite high, what about the rest of your bloodwork? Clearly there is inflammation somewhere, and it needs to be sorted.

It is your right to go to a different hospital and consultant. Your GP can sort it out for you. I would certainly do so if I were you!
01-08-2013, 02:18 PM   #9
Ihurt
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Hi Terriernut,

Wow, see this is why I get so frustrated with doctors. I have had elevated sed rates and C-reative proteins levels on and off for the last 9 years. I have had my sed rate up to close to 30 and was told by a rheumy doctor that that is not high at all. They also told me that your sed rate and c-reative protein levels can rise from even a simple virus. I just dont what to think anymore...Every doctor seems to have their own opinions on this. It is frustrating.





You need to be seen by someone else! 36 is quite high, what about the rest of your bloodwork? Clearly there is inflammation somewhere, and it needs to be sorted.

It is your right to go to a different hospital and consultant. Your GP can sort it out for you. I would certainly do so if I were you!
01-08-2013, 02:26 PM   #10
Terriernut
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I can only hope you get some help soon luv...cause:
01-08-2013, 02:27 PM   #11
xSophiexx
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Terriernut .. yeh the truth is my GI is good and he hasn't said anything about todays results yet seeing him on 24th .. i think il wait to see what he reckons and if that isn't good enough il most definately seek a 2nd opinion.
The rest of my blood work varies im just getting over effects of azathioprine poisoning me so white blood cells low but im also anaemic and have low neutrophiles also.
I feel im at a disadvantage as i still don't really know what im talking about so feel like i have to go along with what they say. im on infliximab at the moment too didn't think it was working but perhaps it has been! but now they think im okay will they pull this?! and if they do i have no clue what theyll do with me re maintenance meds as i Cant take thioprines. too many qs wish my appt was sooner!
The colonoscopy was traumatic v painful i cried the whole way through lmao
01-08-2013, 02:36 PM   #12
Terriernut
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Try our forum wikki if in doubt about things, it's brill. I wouldnt think they would pull you off of infliximab no, it's supposed to be for maintenance.

Fingers crossed your GI can get you sorted!
01-08-2013, 03:44 PM   #13
bigtruck
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Sophie try and calm stress isn't going to help, a crp of 36 is not high at all and the fact the nurse told you that things look improved are encouraging, can you get another appointment with your doc and explain to him what your concerned about and what treatment he has in mind,in the meantime try not to work yourself up over it, this disease takes time and various treatments to get it under control and on the big scheme of things it sounds like your heading the right way.
01-08-2013, 04:28 PM   #14
xSophiexx
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Bigtruck .. i know its not that high in general but last time i was this level i was hospitalized. i know stress isn't good just a worrier i suppose!! ive got to get used to the ups and downs i guess its fear of the unknown!!
01-08-2013, 04:33 PM   #15
bigtruck
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Indeed I know it's easy to say but try and not worry about what you've no control over, remember worrying is like a rocking horse it'll give you something to do but it won't get you anywhere. P.s I'm the biggest worrier ever!!!!
01-30-2015, 04:35 PM   #16
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You should look into closing your icv! I hadn't even heard of it until I went to an amazing chiropractor. He helped teach me how - it's really simple. You basically put pressure on it for as long as you can tolerate (be gentle if you have a lot of inflammation - he started with a few seconds, worked his way up to ~30). I started being able to feel it open and would massage/press there until it felt closed again. Now it stays closed except when it needs to let things through. It took maybe 2-3 weeks to train it to function properly and has helped me feel a little better.

Having an open valve can cause bloating, discomfort, etc. because toxins that aren't supposed to be absorbed by the small intestine are being absorbed from the backwash from the large intestine.

Seeing a chiropractor that really knows what they are doing is incredible. By re-aligning the spine you are allowing nerves to fire properly, allowing your body to start healing itself. I'm not saying it's a cure by any means, but it does make me feel better than anything else I've tried (combined with the lifestyle/diet advice I've been given).
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Crohn's Disease - Significant Narrowing in Ileum - 25 years old - Diagnosed '07
Lactose/Gluten Intolerance
Myofascial Pain Syndrome

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Whole foods multivitamin
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