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Grumpy now - Bleeding Somewhere, Help!

Had my scope today (the 4th this year) . . . I refused to take steroids before this one, because they keep finding nothing much when they scope me, so I figured if they get to see me without meds, it should show the full extent.
Heres the problem, the full extent is NOTHING . . . no inflam, no obvious sign of bleeding . . .
Yet I've been bleeding LOTS, morning jellyfish, bleeding through the day with and without b/ms.
I have a 10year old diagnosis of Crohns, but it would appear this ISN'T crohns. Any support/ideas?
xxx
 
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Jennifer

Adminstrator
Staff member
Location
SLO
Just a scope done? I had bleeding where the scope couldn't reach in my ileum. It was quite a lot and bright red. Have you had other tests done such as endoscopy, barium swallow with x-ray, MRI, CT scan, ultrasound or even a pill cam? Tell you doc to get out of your butt and look somewhere else.
 
Hahaha, thankyou!
Apparently, I was screaming them to stop today and they had to give me extra sedation-I don't remember this- but surely if it hurts under sedation its bad right??
Yes, I had an MRI entero-something-or-other done in March, showed nothing in small intestine. Now, just a curveball to throw in here . . . . I've been in flare for 4 months solid, pretty much since I had a contraceptive implant put in-it's not settled yet and consequently I'm bleeding there too . . . Any link??
xxx
 

Jennifer

Adminstrator
Staff member
Location
SLO
First thought is fistula. There's gotta be someone on here who knows more about that than I do. Does your GI know you're bleeding there too? Have you seen your Gynecologist? Sometimes they can get more done if you mention possible fistula.

Edit: It hurts with or without sedation. They are rough when they're in there. They want you in and out so they can scope the next person.

Edit 2: Perhaps you could give this a read: http://www.aafp.org/afp/2001/1115/p1725.pdf It was posted in the females and Crohn's section.
 
Thanks, I'm reading . . . .
My crohns is atypical too :( I know I'm complicated but I was so hoping today would show bad things inside and mean I needed Inflix or something obvious. Now I'm no further forward . . . .
xxx
 
Thanks
I phoned the docs secretary today, best she can do me is an appointment on 23 march... Thats ages away...
Plus my boss phoned, because I'm sick again I need a referral to occ health... This is where they haul me over the coals for being sick and assess if I'm capable of doing my job...
So, I really need to make the next appointment wih the doc count... Please help! Advice? Questions? Tests? Any ideas what this is??
 
When you go in for assesment - go looking like you are sick!! No make up, hair in a scrunchie, loose comfortable pants ask to be excused once to take care of pads.

People always say crohnie's never look sick as we are masters at trying to pretend we are not as sick as we really are. So don't try to look your best or it just gives them ammunition to say you can't possibly be as sick as you say.

I am a "never go out of the house without looking my best" person. So I would work hard to not look sick when I went to work. So when I had so many abcences, no one really beleived I could be that sick and therefore must be faking it. It wasn't until I started looking like something the cat dragged in at work - I gave up trying to compensate for the ravages of being sick with makeup - did people ( ie nosy coworkers and bosses) really beleive I was that ill.
 
I don't know anything about fistulas, but if she is bleeding that much and also vaginally I hope she at least is taking some iron supplements...I do have experience with a mirena iud that produced such intense hemmoraging vaginally that when I had it removed I went in 12 hours later for an emergency d&c. Sometimes, these devices make trouble and a person only knows that it is not for them in retrospect. She should feel better soon!
 

David

Co-Founder
Location
Naples, Florida
Hi Monkey,

I'm sorry you're having so much trouble :(

What color is the blood? Bright red? Very dark? What did your GI say after they weren't able to find the source of it? Are you on any medications and have they proposed changing/adding to them as a result of this? Have you had any blood tests? Are you scheduled for additional tests?

I do know that IUD's and Crohn's Disease often don't mix. :( Have you considered having it removed? What brand do you have?

Sorry for all the questions, I just want us to be able to help you as best we can.

All my best to you!
 
Thanks guys...
Its not an IUD its one in my arm... I had an IUD for 5 years and no flares at all in that time, when it got old I started bleeding and flaring, so I had it changed... I would have it removed if I thought that was the best thing BUT the reason I have one in the first place is due to excessive monthly bleeding-i was in so much pain and my body would go into shutdown for 2 days a month so I had to consider something to ease this...
The blood is either bright red or like BBQ sauce coloured... It is sometimes kinda congealed into lumps, often slimy and sticky wih mucus...
It was the nurse that did my scope, she never gave me any info after! Im on aza 125mg, I dont think it's made a difference to me. The doc said before that i could have inflix if the inflammation was bad, its not bad :( No bloods for about a month now I'm settled on the aza. No other tests scheduled, I had to beg him to scope me... What should I be requesting? Also, I'm on no suppliments no nothing, they just say my bloods are 'fine' but unless I actually am built like a carthorse it must show something??
Thanks again xxx
 
Hi Monkey

Sorry you having such a hard time. I remember I was flaring some years ago and I had a scope which simply didn't look far enough. I had 'pockets' of infections/inflammation in the looped bowel/adhesions which produced all the usual suspects, blood, mucus etc but it took them to open me up because of strictures and fistulas and a blockage, for them to see the extent of the flaring. Have you had an MRI/CT recently?

I agree with kllyeve on the assessment - go looking sick!

Good luck :)
 
I try my best to look sick and I take my Mum . . . mums are good at fighting your corner :)
I had an MRI entero-something or other in february last year. Never had a CT. I think they worry about radiation, I'm 26 and female . . . .
Also, I have big ridges on my nails and my tongue is swollen, broken and has blister type patches on it . . . I read somewhere this can be iron deficiency? Any thoughts?
Thanks again!!
xxx
 

David

Co-Founder
Location
Naples, Florida
Monkey,

The ridges on your nails. With your hand flat on a surface in front of you, are the ridges going left to right or front to back? I hope that makes sense. :) If front to back, is there a predominant center ridge? And if there is, is it raised or a depression?
 
Okies, the ridges are front to back, it kinda goes downhill from my nailbed then theres an upward bump, like a curb, then a halfway down again bump (doesn't go as far down as up) then staight, most noticeable on my thumbs but also 3 fingers on my right hand and 2 on my left
 

David

Co-Founder
Location
Naples, Florida
Hi Monkey,

Hmmm, I'm having a little trouble picturing that. Are you able to see this article? If not, signup for an account (it's free) as it's very worthwhile. It showcases how various vitamin and mineral deficiencies (also check out this link) and certain diseases manifest in the nails.
 
Thankyou for that link :)
Hmm, not really like any of them . . . perhaps Beaus . . . . I definately have speed bumps on my nails . . . odd, but it's not causing a problem, just curious!
 

Jennifer

Adminstrator
Staff member
Location
SLO
May not be causing any problems but your body is showing visible signs of problems by your nails being affected in the first place. Ask to see the blood work. Ask them to check your vitamin levels like iron, B12, folic acid, vit D, calcium, everything. Have them check your blood sugar, inflammation in your body, blood count, every blood test under the sun and ask to see those results and ask what the normal range is for each. If they don't have time to answer your questions, get a copy of those tests and find another doctor (keep seeing the current one until you find someone else).

You may still be technically in the normal range for everything but your body is obviously showing signs that you're low on something and probably multiple things (even being low can cause unwanted symptoms). Iron for sure because of the bleeding and supplements alone may not help but you can always try. There are slow release iron tabs out there but the milligrams may not be enough. You have to know how low you are cause you don't want to take too much. The supplements themselves wont be too much but you need to know how many you should take at a time and how often. It takes 650mg of iron everyday just for me to be in the mid normal range. Blood work needs to be done before and after you start supplements and then again many months later to see if you're still within normal range.

I'm 29 and female and have had more radiation than Chernobyl (jk, not that much but you get the point). Can't fear radiation when you're well being and life may be in danger from uncontrolled bleeding. A CT scan with and without contrast may be in order along with an ultrasound, pill cam, barium swallow and enema with x-ray (stuff I listed in my first post basically). Still need to speak with your gynecologist as well.
 
Unfortunately, I don't have a gynae . . . I have to get referred via either my GP or my GI . . . . the system here sucks because I can't either just rock up and ask for tests and stuff. Thankyou for the ideas, I can talk them through with him next time. I'll get an appointment with my GP to discuss bloods and nutrition etc etc
xxx
 
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