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08-03-2011, 02:40 AM   #1
Volcom
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The waiting game

Hi All,

My name is Abby, I am 24 years old and i have 'suspected' crohns.
Two drs have said this to me and one surgeon yet I have not seen a GI ( as people keep mentioning) I am new to this as I have been trying not to look to close into it all.
Wasn't till my third dr said it to me and I thought hmmm I better take a closer look at this.
I had a big fissure since I was 11. I was always given creams for them by drs and told it would go away, yet it never did. I would bleed from them but to me it was normal... i lived with it.

It was after I had my second baby in Sept, that i noticed things happening more so.
My fissure was starting to hurt more, bleed more, having mucous, and i would get shocking stomach cramps and sometimes followed by blood ( but not from the fissure)
I seen my dr who sent me to a surgeon, He looked at the fissure, did a sigmoidoscopy, that was fine so all he did was give me cream.
After a few months of these cramps getting worse, fatigue, blood i went back and got sent to another surgeon who took one look at it and said he would do a fissurectomy and spincterctomy. We also chatted about my cramps, how uncomfortable it was, the fevers, nauseous , dizzyness, how sporadic it was and just the PAIN in general. He said he would do a colonoscopy as well.

I went in for my operation, but it wasn't till I was on the operating table that I found out I couldnt get the colononoscopy done due the drugs. My surgeon wasn't impressed but they did the fissure anyways. I even did the prep... yuck.

That was done in May, I re scheduled another colonoscopy to be done 23rd of august.Since then the pain has gotten worse, these episodes seem to be getting closer together, it's been affecting my life dramatically and even my relationship with my partner. I had tests the other day to show that I am severely low in iron which proves just how much blood i have been losing.

So right now I am waiting fr the 23rd, if i have another episode the drs are prepared to have me admitted to the hosp asap. Which is good. I never thought I would say this... but I am waiting for a episode!
I am so scared it will come back all normal. What if i am not having a episode when having it done and they find nothing?
All i want is answers because its ruining my life

So that is whats happening to me.
08-03-2011, 05:33 AM   #2
StarGirrrrl
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Welcome to the Undiagnosed forum

Quite understandable on all your fears, we've all gone through one or all of them at some point on this road!

Hopefully you will be one of the lucky ones who gets a dx quickly.

One thing that strikes me is that you've had no investigations around your small bowel. A flexi-sig and C scope alone are nowhere near enough to rule IBD out. Crohn's can occur anywhere from mouth to anus. The Terminal Illeum is where the large & small bowels join, and a common place for CD. That should be reached during your colonoscopy.

But if everything is normal on your scope, you Drs need to be looking at small bowel tests, such as Barium Follow Through or a Capsule Endoscopy (Pill Cam). The latter is in my opinion the best test but it can be hard for people to get- however with low iron i'm sure you would qualify, as one of the general criteria seems to be needing to meet that.

Or. you need to look for new Drs if they refuse!

There is lots of small bowel that can't be reached by the "probes".
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2014 IDA & low B12.

June 2014 admitted to Hospital 3 nights as emergency transfused 2 units of blood. Dangerous case of anaemia.
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Hoping to stop anaemia treatment soon & lower B12 daily dose!
08-03-2011, 06:16 AM   #3
Volcom
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Hi, and thank you for your reply.

My gathering is, that they originally thought the blood the pain and everything else was from the fissure. Which of course it was not. I knew it wasn't, far too much blood and my blood count shows that.
They have only gotten around to do the C-scope, and they are doing the one down the throat.
I am very glad you could give me those other test names. If this comes back fine, I will be demanding one of those even if that means i have to travel for it to be done. I have private health cover so hoping it covers those.


I was a little bit frustrated with the drs. Last week I went there after a bad 'episode' i lost a serious amount of blood, i was passing out and was all together unwell, he told me if it bleeds again to go straight to the hosp. Well on Tuesday night i had another episode, no blood but I was in a lot of pain, i had to get tests back. He said to me, i should have gone to the hosp so if i get it again i need to go. He said go to him first and he will send me, even if there is no blood. WHY didnt he just send me to the hosp right there and then and get this over and done with? I am really hoping ( never thought i would say that) for another episode before the 23rd, so I can go to the hosp and they can see the amount of pain I am going through and prehapes see inside that its now how its meant to be.
08-03-2011, 08:15 AM   #4
StarGirrrrl
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That's good you're getting the upper endoscopy. Again only reaches a tiny portion of the small bowel, but good that you're having it all the same, i've been ill for 5 years now and only just had the upper done!

Hopefully now they've decided your problems don't stem from the fissure, they will get you some help.

Also, if you're very unsatisifed with your current Dr then you can always see about changing.
08-03-2011, 08:20 AM   #5
Volcom
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Right now I am very happy with my Dr, if anything it is the hospital staff.
I changed surgeons for that reason as my other surgeon was brushing it totally off.
So I will wait and see. I live very rural, we only have one hospital out here and that is all. 8 hours to the next. But I am more than willing to travel for any testings because the pain and the life changing is getting me down so much. All i want is answers and I am sure many of you feel the same.
08-03-2011, 12:46 PM   #6
Cat-a-Tonic
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Hi and welcome to the club and the forum. I have had small fissures here and there over the years, but nothing like what you described! I hope the colonoscopy finds something, but try not to get too depressed if it comes back normal - like Star said, if this is Crohn's, it can appear anywhere from mouth to anus and frequently manifests in the small intestine. Sorry to hear you've already had to do prep once without getting a scope, that must have been miserable! The prep is definitely the worst part of the whole thing. The scope itself is a breeze in comparison! Good luck on the 23rd, I hope you stick around the forum and keep us posted.
08-04-2011, 01:21 AM   #7
littlemissh
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Hi,
You should read Hannah-Roses thread as she has had a big and painful fissure for years and still no diagnosis but they think crohns and are considering infliximab to treat it.
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Diagnosed Crohns small bowel 2010,Gastroduodenal crohn's Jan 2012. Gastroparesis june 2014.
Duodenal perforation/peritonitis nov 2011. Portacath placed Nov 2013. Gastric pacemaker 2015.
Perforated jejenum/peritonitis oct 2015, PEJ for enteral feeding nov 2015

On Humira every 7 days, intermittent iv iron, regular blood transfusions :faint:
On TPN since March 2016.
08-04-2011, 06:24 AM   #8
allieinwonder
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Hello, and welcome!

Your story just shocks me that they didn't treat that fissure properly for years! I am so sorry that you have had to go through that. I really hope they find the issue during your colonoscopy! The prep sucks no matter how many times you do it, but the day after it is a distant memory.

If you have an episode before your scope, I hope they figure out right then and there! One doctor I have spoken to about my situation said something that makes a ton a sense: when IBD is at an early stage, it can come on and go away so fast that you can't get tests fast enough to find proof. And if the tests are in between episodes, they can show nothing because the illness is too "young" to show scars and damage. Its one of the many reasons IBD patients can wait years for a real diagnosis!

Hang in there!
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08-07-2011, 11:53 PM   #9
Volcom
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Hi guys, Sorry I haven't replied in so long.
My son got put in hospital of all things, he hasn't been to well at all.
My mum has come over to help out due to sickness and my grandmother arrives mid month to help out with the kids as my partner is a shift worker in the mines.
Since my son was put in hosp I have had mild 'flare ups?' I think you would call it. But I have been so concerned with him incase anything happens so I have been just staying at home.
I just read a post that another sign of it is skin tags near the anus? That i have too. and I not long had a abscess drained when I had my fissurectomy.
I am starting to get the nerves on for the colonoscopy .... ok more like the results.
09-08-2011, 05:48 PM   #10
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Hi Guys,

Well Scopes have been done and gone.
One thing that annoyed me, I only had a flare two weeks before it ( grrrr) Had it done.
Went to recovery where i asked what they seen and they said... everything looks clear.
All I could do is Cry, i balled my little heart out. I had SO much hope they would find SOMETHING. The lady turned around to me and said ' oh are you that happy' I said no... I am that SAD. She couldnt understand why? Like I said to her.... I just want answers now

Anyways they had taken a heap of biopsies as well, which I couldnt find out right away.
Two days after... what happened. I had a huge flare and again three days later. I called up my dr for an appointment ( relating my low iron). The night before I had a big episode with a lot of blood and mucous so I took samples so they could be checked out.

Went to get biopsies results only to find out, they found nothing either. They said my stomach was inflamed but that was it. I was not impressed especially when they said, well this is it from us you have to find somewhere else to get your answers from, but you should be happy you are healthy and fine ( IM NOT).
Same day I got back my stool results, they came back positive for blood and mucous.
My iron keeps dropping, Im on iron tablets and liquid. I need a transfusion but until i get iron studies done i cant. SO THERE HAS TO BE SOMETHING.

My dr has sent me to get a CT scan, i get that done in 9 days. HOPING they find SOMETHING. From there I will be sent to a G.I, however he is 900km, so we are saving for that trip already.

As many of you would know how I feel... I am giving up hope, giving up on being so positive. I have been nothing but positive since this all started but everything keeps coming back fine. I started to believe it was all in my head, till my grandmother was here and witnessed it too... Then my results came back positive for blood and mucous.... there has to be something.

It's really starting to rule my life as much as I am trying to stop it from doing so. So hard
09-08-2011, 06:14 PM   #11
StarGirrrrl
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We all understand exactly what you're feeling- been there, done that and bought out the t-shirt shop!

I think you need to get in and see a GI asap. A surgeon is not a specialist in GI issues and they have limits where those issues are concerned. Stool samples positvie for blood is a HUGE alarm bell. And the low iron levels. I am sorry the scope and biopsies did not show anything, but there is alot of small bowel still to be looked at, Pill Cam and Barium Follow Through would be the ideal next stage should the CT also be normal.
09-08-2011, 06:40 PM   #12
Volcom
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When I spoke to the Surgeon, he said oh no Crohns or colitis don't form in the small bowel? I just walked out TBH.
Can you explain to me what the Barium Follow through is?
09-08-2011, 06:44 PM   #13
StarGirrrrl
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When I spoke to the Surgeon, he said oh no Crohns or colitis don't form in the small bowel? I just walked out TBH.
Can you explain to me what the Barium Follow through is?
#

Ditch this Dr quick!!

Colitis is confined to the large bowel so he is correct.
Crohn's however can occur from mouth to anus and often hides in the small bowel. Both reasons why it can take many many tests and years to get a dx

A BariumFT is where you have a special drink (barium) and then they x ray you over the morning. It highlights your small bowel as barium is not water soluble so a great testing medium (not so great shifting out of toilet after though lol).
09-08-2011, 07:03 PM   #14
Volcom
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Hes ditched me.
I don't want to go back there anyways.
Keeping with my regular GP until he sends me to a G.I down in Perth, Australia.

Oh sounds lovely.. not lol. Although i rather have that than prep for a colonoscopy haha
09-08-2011, 07:07 PM   #15
StarGirrrrl
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It's ok really, just a bit of a hassle afterwards. It was such a hard job for me since no-one had told me to be aware of the toilet issue, so by the time I realised what was going on it was quite bad.

Yep, anything has to be better than prep!
09-08-2011, 07:12 PM   #16
Volcom
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Oh man, I think if I ever have that done ( will be in perth) I will make sure I will be booking into a Motel very close by to the hospital haha.
Have you ever had a CT scan? what does the drink taste like?
09-08-2011, 08:13 PM   #17
StarGirrrrl
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Don't worry, I meant the toilet blockage from the barium, actual bowel movements were totally normal for me after the test!

I have had a CT but only with the dye they inject.
09-08-2011, 09:24 PM   #18
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I am meant to get the contrast dye but I happen to be allergic to it =/
09-25-2011, 11:41 AM   #19
Volcom
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Well CT showed nothing
My Iron levels are dropping A LOT!!! Within 20 weeks my iron lvels went from 9 to 5.
They are putting me on iron injections, has anyone had these before?
I'm also being sent to a GI in Perth, I need to call them up tomorrow, need to choose if I want to go private or public. I may see how long the waiting list is for public and decide from there.
AGHHHHHH I feel like I am going crazy, and as if its all in my head. But then i get an episode and i turn to myself and say abby this is NOT in your head!!!
Two nights ago i had a bad episode where i was passing blood clots

Im so used of these now. I know the hospital will send me home with nothing.... should i just go to the hospital so they know how serious i am about getting results?

I cannot handle losing so much blood. I can't handle all the pain. But in between flares ... i mostly cannot handle my lack of motivation!!!! I am a Mum of two very young kids. This is insane.
My low irons have been the reason why i haven't been back to update as much, im just so tired and out of it. I can't even walk around a department store without feeling like I am about to faint.
09-25-2011, 12:43 PM   #20
littlemissh
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I have iron infusions. Had no problems with them. Time to sit and relax in the chair !

I know what you mean about no energy and having 2 kids, but the iron infusions work reasonably quickly to get your haemoglobin levels up....nothing like a blood transfusion to perk you up quickly though!!
Passing blood is a bit frightening , I think part of it is knowing when to do something about it. I always worry I'll end up bloodless..lol!
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