• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

New member - hello

Keona

Keona

Hello everyone,

I'm not sure if I ought to be posting here if I haven't received a diagnosis of CD. I originally went to the GI a few months ago due to severe GERD and with all the questions I was asked next thing I knew I was being slotted in for an MRI to check for Crohn's disease, specifically the lower bowel.
I have had issues with my bowels for over 20 years and was told I had IBS and put on various medication for that. He is checking for Crohn's because I have right lower pelvic/hip pain that runs in to my right upper thigh. The pain isn't severe, just uncomfortable. I also have a lot of diareahha and gas and am exhausted most of the time. My brother has severe Crohn's but I don't know much about it as I don't have contact with him.
I see a psychiatrist for medication purposes as I have complex PTSD. I showed her my hand today that has little blisters on it and it is really red and scaly. I also have eczema on the back of my legs behind my knees. She told me that it is an indicator of Chrohn's as well, and the anxiety medication she has me on is supposed to increase energy - yet I am sleeping all the time.
I am frustrated b/c I am a student and it is difficult to get any papers done and eventually causes me more work as I have to make appointments with the prof's and dean etc to state why I am not getting my work done. I am at the end of my degree.
I had a laporoscopy done to see if I had endometriosis about 10 years ago that come up neg. I am wondering if anyone has severe menstrual pain (same right side area), vomiting, fever, etc and can this also be a symptom?
To date, I have had extensive blood work that took me 2 months to get done. On the monday I got it done, the MRI was booked. I have an endoscopy on April 12th for GERD and GI problems and MRI in June 5th. I live in Canada and although I understand the wait, it is frustrating as my life is only sleep, being in the bathroom and more sleep. I wish someone could tell me what is wrong with me :poo: My friends are constantly saying "oh, you'll be okay" (which I don't fell ok) and I have no family, so support is few and far between. I am glad I found this forum!

Thanks for reading and I am glad to hear for all the US suffer's that there is a health care reform signed today.

I wish everyone good health!
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C

Crohn's 35

Inactive Account
HI Keona!! Welcome, and like your name. I have suffered since I was a teen on my "days" terrible pain. Had D for a long time and then in my 30's dx with Crohns. It was a year of pain and agony for a dx. I have never had an MRI and both docs, know not to, because I would have to be out! My dx have mostly been successful with Colonoscopies.

I have sibs with UC and CD too, it runs in the family. Don't give up until you get answers ok? Glad you found us, great people here to help you out. Hang in there!
 
Jer's Girl

Jer's Girl

Welcome Keona! I hope you find answers soon. it is always frustrating when there is no formal diagnosis. You have come to the right place and will find lots of advice and support here. Good luck!
 
W

whysoserious

Hello Keona! I don't have an official diagnosis yet either, though I hope to recieve one soon. I too have severe menstrual pains. In fact, every cycle I have a flare-up. So not only do I have to deal with the sucky cramps, I'm stuck in the bathroom all day! Hang in there and welcome!
 
M

misscris

:welcome: to the forum Keona. Don't worry, even if you don't have your diagnosis yet, we're a welcoming bunch to help you get through this time. I too have eczema, but on my hands. In fact, right now I'm really hurting with it and I wish it'd stop busting open already. grr...

Before I got my diagnosis, I too had hip/pelvic bone area pain on my right side. Like you described, not painful necessarily but aches and irritating. You know it's there. Let me ask you this ... if you curl up and bend your knee up so your leg is squished up to your chest .... does it feel like you're somewhat full on that side by your hip as well? It's hard to describe, but I think you'll know what I mean. When I went in for surgery, they found an abcess down in my lower right groin area (almost by the thigh) it all came from a bowel perforation. My bowels were attached to my abdominal wall by my hip/pelvic bone causing the pain but then developed a leak causing the abcess. I hope you get your answers soon and of course hope it's no where NEAR what mine was.

Also .. I too was told I probably had endometreosis for a few years before that surgery and diagnosis. They never did do the exploratory surgery to find out, but found out that the pain was actually from Crohns, not endo. From what I've heard, it's fairly common for women to get wrong diagnosis. A lot of women on here have complained of getting pain around their periods and being told it's severe cramps or endo.

Sorry you're going through such a rough time. Just keep going and work towards getting your answers and the help you need. I know it can be a hard road. And of course we're all here to help as much as we can, even if it's just to read a vent now and again.
 
Keona

Keona

Thank-you everyone for your replies! Very much appreciated. I went to another forum a month ago and got the sense they didn't want me there b/c I hadn't been diagnosed. They were also questioning why the GI would do a MRI instead of a colonoscopy. I don't know the answer to that... they did mention a colonoscopy but I think by the look on my face, he decided to do the MRI. My friend who went with me had both a colonoscopy and endoscopy (for other reasons) and told me about both.

Whysoserious - I do think it sucks about the cramps - that is when it is worse for me, and I thought that I may have had endometriosis. I did go to the hospital for the pain once (Im the last to go to the hospital) and the nurse told me I looked like death warmed over. I think she accuratly described how I felt but they only gave me a needle of gravol to stop me from throwing up, did a pap test and sent me home. They told me to go see my family doc.

misscris - I tried lifting my leg up in a curled position and although it isn't described as pain it does make me feel my hip more. I was sitting on my friends couch awhile ago with my right leg bent under and my left leg dangling over the couch, in a half crosses legged position and I dropped my keys on the floor. When I went to pick them up I almost went through the roof with pain. I have also been writing a paper and when I lifted my arms in the air to stretch, I again felt a pull like in my pelvic/hip area..very painful for about 30 sec. and then it went away. When I am standing at the bus stop, it hurts to bare all my weight on the right side sometimes and it hurts. My family doctor told me I had arthritis and gave me meds. When that didnt help at all, I was sent for an xray of my hip...nothing. Then she wanted me to have an ultra-sound of my right ovary and again nothing. The tech person did a transvaginal ultrasound and her response was "no wonder you're in pain". When I asked what was wrong she said she couldn't tell me. I called my doctor and she said she shouldn't have said anything and it was normal. I suspect it was because I had an enormous amount of gas and had bad diareahha right before.

I called my GI today and my blood work is all normal. Does this mean I don't have Crohn's? How come they are still doing the MRI on my bowel??

So confused as to what is going on...it all makes me feel like I am losing my mind...
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Astra

Astra

Moderator
Hi Keona
and welcome

I'm so glad you found us, we're here to support you and help, You are no longer alone,
I would like to add to what Misscris said about misdiagnosis because this happened to me. I've had symptoms for 15 years and was told I had IBS. I started my periods aged 10, and by the time I was 14, I was in agony every month, vomiting and D, fever and fainting, I was put on the pill, and it eased.
to cut long story short, I had severe pain one day, 8 years ago, right side, hip, thigh, back, and got an ambulance, and a scan etc
was told I had ovarian cyst, had a total hysterectomy, cyst was a fibroadenoma, and my insides were full of endometriosis.
Three years later (2005) same pain, right side, hip, thigh, back etc, went to GP, screamed for a referral to gastro, got a scope, got a dx of Crohns! and the rest is history!
Maybe I've had Crohns since I was a teenager, I don't know, but I've told you my story so that you get your gynae to check again for cysts and endos because these aggravate Crohns and all 3 stick together like glue, and you're last one was 10 years ago, and this would explain a lot of pain every month

hope you get a diagnosis soon and put on some meds that will ease you, and remember, you can come on here to talk whether you have a dx or not.
lotsa luv
Joan
xxx
 
M

misscris

Keona said:
misscris - I tried lifting my leg up in a curled position and although it isn't described as pain it does make me feel my hip more. I was sitting on my friends couch awhile ago with my right leg bent under and my left leg dangling over the couch, in a half crosses legged position and I dropped my keys on the floor. When I went to pick them up I almost went through the roof with pain. I have also been writing a paper and when I lifted my arms in the air to stretch, I again felt a pull like in my pelvic/hip area..very painful for about 30 sec. and then it went away. When I am standing at the bus stop, it hurts to bare all my weight on the right side sometimes and it hurts. My family doctor told me I had arthritis and gave me meds. When that didnt help at all, I was sent for an xray of my hip...nothing. Then she wanted me to have an ultra-sound of my right ovary and again nothing. The tech person did a transvaginal ultrasound and her response was "no wonder you're in pain". When I asked what was wrong she said she couldn't tell me. I called my doctor and she said she shouldn't have said anything and it was normal. I suspect it was because I had an enormous amount of gas and had bad diareahha right before.

I called my GI today and my blood work is all normal. Does this mean I don't have Crohn's? How come they are still doing the MRI on my bowel??

So confused as to what is going on...it all makes me feel like I am losing my mind...
Click to expand...
We are a very welcoming bunch, so have no worries about not being accepted or allowed here. Keep posting and reading and trying to understand whats going on. Don't worry about whether you have a diagnosis or not. Either way you need support and understanding.

I didn't have a lot of pain moments in my hip area necessarily, just the discomfort and aches. Ihad noticed that when I would curl up, which I do often, it felt more full (for lack of better words) in that area. Which I would assume now that I know, it was my intestines/bowel since they were attached over there. I had an ultrasound and x-ray as well both showing nothing. With mine, they only found it all because they went in for a hernia surgery. I hope you get some answers. It could be nothing, it could be something. Hopefully you do find out soon though. Just keep pushing them to find out what is going on. Maybe you should pursue the hip pain a little more. I'm sure they'll look at that area in the MRI, but don't feel bad to remind them that's a trouble spot.

Everybody says they start to feel like they're losing their minds with this diagnosis process. On the doctors behalf, it does seem to be a hard disease to get a correct diagnosis on. Hopefully they'll get some answers with that MRI. I'm assuming they still want to do it so they can actually see whats going on inside.
 
C

Crohn's 35

Inactive Account
Keona said:
I called my GI today and my blood work is all normal. Does this mean I don't have Crohn's? How come they are still doing the MRI on my bowel??

So confused as to what is going on...it all makes me feel like I am losing my mind...
Click to expand...

NO, blood work can mean squat. I know I had every test under the sun, blood work and all always came back normal :confused2: . Their diagnosis ?? It was all in my head :ybatty: . Thank God my Gi kept fighting for me :)
 
ameslouise

ameslouise

Moderator
Welcome, Keona. I hope you get some answers soon, and start feeling better, too. Hang in there. And feel free to unload here - there are lots of really knowledgeable and friendly follks to lend an ear and offer advice.

-Amy
 
Keona

Keona

Wow, I am so glad I found this forum! I am feeling validated already.
When I had my laporoscopy for endometriosis (neg), the doctor told me to have children and that would take care of the problem. I was a little taken a back as I was not in a position to have children and I was young.
I have also had physio for my hip to no avail. They told me I had sacroiliitis..When I google sacroilitis and Crohn's it seems to be a correlation but haven't taken the time to read anything about it yet. I have read soo much on Crohn's that I googled myself in to a dark place...lol. I have decided to just wait and see what my MRI results are.
Thanks Jetta lady for your replies...a fellow Canadian! It is good to know that the blood work dont prove much if they come back okay. I started to think maybe it was all in my head... funny how I am getting the same message from my family doctor. My GI is great! It took me a year to get in to see him and I have an appointment for follow-up on March 2011! I do have the endoscopy and MRI and can speak to him then and also if there is anything on the results they will make a much earlier appointment. It is very difficult to not know what is going on...and it has been going on for a long time. I understand that doctors need to do process of elimination but it seems as if after they eliminate something, they drop the subject until I go back with continued complaints. My family doctor is really big on mind-body connection and since I have PTSD, she seems to blame everything on that... body memories, flashbacks or something.
Thank-you all for your encouragement to persist with getting an answer. This is the most sane and understood I have felt in a long time :)
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Astra

Astra

Moderator
That's great Keona!
Keep with the positivity, it will help to ease your anxieties, and you're not losing your mind, we've all thought that at one time or another
see you around the forum
xxxx
 
Dustin

Dustin

Hi Keona, and welcome.

I had a GI appointment yesterday, and was told that all of the bloodwork I had done recently, as well as the small bowel meal, came back "normal". I was doubled over in the chair while talking to him from the abdominal pain, I've had diarrhea quite a bit lately, not to mention the vomiting, abscesses, weight loss, joint pain... but everything said "normal", so it had to be in my head! Personally, I don't consider my current predicament "normal". As has been mentioned, don't put too much stock in blood test results.
I hope you feel better soon.

Good health and best of luck.
 
P

pcbgirl227

Hi Keona and welcome to the forum!!! There really are great people on here to listen and help, so glad you found them!!!

I too had the same issue. Severe periods, and after having a child was told I would immediately have to have a hysterectomy due to being so bad. Then about 8 mths later, started having severe pain in lower right side and they said I had a cyst on r. ovary, which they removed. After surgery, developed hematoma which wrapped around my small intestines at the illuem, had resection, but still not diagnosed with Crohns. Five years later, same pain in right side and in my right hip and was finally diagnosed. Now, anytime I have a flare up I have pain in my hip so bad if I am sitting for awhile I can barely walk. So trust us, sometimes it takes some leg work to find out what is wrong. Just hang in there, Stay Positive and hold tight - it is a long ride ahead!

- Candace
 
Keona

Keona

Thanks everyone. All of your input really makes me want to be assertive. I have a rash on my left hand that looks like this: (I also have ecxema on the back of my legs - have had ecxema my whole life but the hand rash is very new).
http://dermnetnz.org/dermatitis/pompholyx.html
looks like the top left pic. Not really bothersome in comparison to my burning stomach/abdominal area. When I tell friends about my doctor telling me to tell my GI doc, their response is "I get that too". Sometimes I think they are thinking I am making more out of it than it is. I don't say things like, "well, do you have pain in your right side and hip, too?" or "do you have a lot of diarreah?" "Do you have GERD?" This is the reason why I don't tell people and then when I do they say things like "it's probably not Crohn's b/c Crohn's is really dibilitating." LOL...not funny but I don't want to talk to anyone about it anymore.
I have done a lot of research on this since I last posted and came across some funny and some scary stuff! This may put a smile on some peoples faces:
http://www.toilet-related-ailments.com/crohns-disease.html

I have googled numerous pictures of the lower bowel (what the MRI is for) and went as far as googling, "what is wrong with me?!?!". To no avail..of course. I am counting down the days until I have my endoscopy on April 12th. I researched to see if this can view my lower bowel and it can't - only part of the large bowel. My MRI is on June 8th... so the wait is difficult.
Today has been a rough day. Just a lot of stomach problems - a lot of burning and feeling like my stomach is gonna explode. All I want to do is eat ice and very cold liquids. I can't sleep and only find little relief laying on my left side for some reason. 2 weeks to go for my endoscopy - sounds a little twisted being happy to have a tube rammed down my throat!
Until then, I will keep reading posts - some of them are quite funny and make me smile :)
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Astra

Astra

Moderator
Hi Wendy
hang on in there!
Did your doc give you some meds? to tide you over til your scope
Hey
that link on squatting is fascinating! however, I will NOT be squatting in my bathroom! but if I get the big C, I might consider digging a trench out behind the shed in the garden!
Take care
xxx
 
Keona

Keona

Hi Joan,
My doc gave me creme for my eczema on the back of my legs a long time ago so I have been using that on my hand. It is a steroid creme. The doc I told was a shrink who put me on anti-anxiety meds and she told me to go back to my GP but she is on sabatical and I don't like the intern. She did tell me to show the GI doctor as well so I will do that if I still have it.

HAHA... I read a lot of stuff that claims to cure Crohn's symptoms but nothing like a new toilet. Bizarre.
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LOSTnut

LOSTnut

Poopy
Hi Keona, I hope you will have a diagnose soon. Nothing is worse than not knowing. And, I totally agree abouut telling your GI about ANYTHING with regards to other medical or female conditions, meds and even private stuff, like school and love life. If he is the doc you need, he should be asking those questions anyways because (at least for me) stress is a major factor in my Crohn's symptoms.

LOL -- love the new toilet remark because it reminds of the shape of my butt on my toilet seat!
 
Keona

Keona

I went to see my GI about GERD so it was through his questions that I was informed that I may have Crohn's. If it weren't for him asking if I had ever had any surgery before (had the laporoscopy to look for endometriosis - neg), I would have never made a connection. He also knew enough to ask if I had any recent tests - which I had an x-ray of my hip to look for arthritis...again, neg. My doctors intern told me I probably needed a new bed and that was the cause. The reason why I like it here so much is b/c whatever is happening with me is starting to make sense a little more. Crohn's affects anything from the lips to the anus. I have major problems with my esophagus . I know not everyone with GERD has Crohn's but it seems a lot of people with Crohn's has GERD. It is difficult to know what to tell your GI when you dont know what the symptoms of Crohn's are. I would have never of thought that a skin rash could be connected to Crohn's....until I read it here.

HAHA... As a student, I don't think I would be able to afford a new bed AND a new toilet :)
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teeny5

teeny5

OMG...seriously so all we need is to squat when we poo, who knew!

Welcome Wendy! There are really great people here. I was diagnosed with Crohn's pretty quick but they ran more tests to see if it was anywhere else. Mine is only in the large intestine. I also have GERD.
 
Keona

Keona

"Only...?" That sounds bad enough to me :) So is GERD part of Crohn's if you have Crohn's since Crohn's affects anywhere from your mouth to your butt? I'm still confused as to how they know it is Crohn's or not...what do they see that tells them it is formally Crohn's? Anyone??
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Nancy Lee

Nancy Lee

Hello Wendy and welcome to the Crohn's Forum. :)

Usually when they do a colonoscopy they do a biopsy and it can confirm Crohn's.
But other tests can as well...please keep us posted...
and be persistent in getting a firm diagnosis...

Crohn's is one of the most misdiagnosed diseases in the world.

Make yourself at home...good to have another Canadian aboard.

Hugs~Nancy
 
M

misscris

hey Keona

I too have eczema, and I started getting bumps like you showed in that top left picture. I basically was calling it my frog hands when I got it. Question ... do they start out as bumps and then basically get more and more shallow then just kind of burst open to dry skin? Does that make sense at all? Well I have that as well and I was told by a doctor once that it's a 2nd form of ezcema. It's a long title adn I don't remember what the clinical name is at the moment. Does that sound like what you have?
 
Keona

Keona

I have had ezcema my whole life - on my eye-lids really bad until they bled and on the insides of my elbows equally as bad. As an adult it changed to the back of my legs and only recently my hands... literally only a week or two now. I cant tell you if they pop on their own b/c I pop them. Yes, it does turn to dry skin - looks like the 2nd row middle pic but only more red. I was told it was a type of ezcema as well. Looks terrible but at least it doesn't hurt much or itch like the ezcema Im use to (until I forgot about it the other day and used hand sanitizer!).
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M

misscris

Hand sanitizer. Ouch. I've done that. And of course once you do it, you can't take it back. You just have to wait for the burning to stop! My Doc at that time told me the frog ezcema (as i called it) was brought on more by stress. I still get both forms on my hands, but also get it on my feet sometimes and recently my elbow as well.
 
Emkat8

Emkat8

Hi Keona :)

I'm a newbie here too, and like you still waiting for a diagnosis. I get a lot of trouble around the time of my period too. It seems that that is the absolute worst time for me in regards to my stomach cramping, diarrhea, bloating, gas, etc... Pretty much just a bad week for me! So you are not alone.

But hopefully you will get a diagnosis soon-hang in there. I know how frustrating the wait can be. I've been trying to get answers since December and my first appointment with the GI specialist is next week. So a whole four months! Just not knowing what is wrong can be so frustrating....

Hang in there and may God bless you and help you through this rough time :)
 
Keona

Keona

Hi Emkat8,

I hope you also get some answers next week. It took me a year to get in to see the dootie doctor (his new nickname since all he hears about it poop). I think we have appointments around the same time. I hope we both get answers :)
I have found a lot of people on here have difficulty waiting :)

I hope to hear how it went at your appointment!
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Keona

Keona

I am just wondering something but not quite sure how to describe it. There are times that I get pain. It might be easier if I describe one experience. I was on the bus and I went to get up and I had this really bad pain. I don't want to sound rude but it felt like I was giving birth to a watermelon but only it was a lot of pressure pushing down and not exiting anywhere. I couldn't move and broke out in a sweat - on a scale of 1-10 it was a 9. I couldn't stand up and I couldn't sit ..almost caught in between feeling immobilized. It lasts anywhere from a minute - 10 minutes. I have had it happen for several years but never told anyone because when I think of how to describe it, it doesn't really explain very well.
So at risk of sounding stupid...anyone know what this is? It's not constipation and I don't know what else it could be.
One week until I see the G.I doctor.
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Nancy Lee

Nancy Lee

Hi Wendy...

You do not sound stupid!! :ysmile:
There are no stupid questions here...just odd symptoms sometimes.
I'm afraid I can't help you with this one...maybe someone else can...

But be sure and describe it to your GI doc when you go..
exactly the way you did here, okay?

Hugs~Nancy
 
W

whysoserious

Hi Keona! When I'm on my period and flaring I get a lot of pressure in my vagina too, although not to the extent that I feel like I'm birthing a watermelon. Sometimes it's bad enough that I can't even wear tampons and sometimes it's just an annoyance. I think it has more to do with my stomach than my vagina, though.

Sorry to all the gents who read that, LOL.
 
Keona

Keona

Hi Whysoserious,

I have the same period pains although it isn't around my period and there is no warning just comes out of nowhere. I can't even pinpoint where it hurts which is why I think it makes me sound kinda ridiculous. All I know is it is in my pelvic region under my bellybutton area. I'm not even sure if the pain is vaginal or anus..just in between and a lot of pressure. When it happens I am afraid to move and it is extreme pain when I try so I am sort of stuck in that position. When I am sitting I have to brace myself when it happens.

All I can say is I am so glad this is via internet as I would never have mentioned any of this. My GI is a male.
I'm sorry too for any guys who read this... I think they've run from this thread though.. I am hoping all of this gets a little less humiliating. I'm typically a shy person.
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Dustin

Dustin

Hi Keona, having Crohn's, there is really nothing that embarrasses me anymore - and it is better to tell your doctor and be slightly embarrassed for a short time, than to not tell him and find out it's more serious than you thought.

I have had severe pain where it started in the midsection in the front, and then radiate throughout my entire abdomen and chest area, from front to back. I couldn't move, or even breathe without it hurting more... it goes away after a minute or so. I have no idea what causes it, and my doctor doesn't know either, he said he pretty much won't know unless it happens when he is there (which of course never does). He has run tests, and everything came back normal (as per usual). I have just chalked it up to my body not being normal, and just hope it doesn't happen when I'm crossing the street!

Hopefully they find some answers for you. And I am a guy, and didn't get embarrassed reading the posts!
 
W

whysoserious

Dustin is right, it's better to let your doc know and be a little embarrassed than to not find out what's wrong. When I had my first flare I was mortified that I had to keep telling several male doctors and nurses that I was bleeding out of my butt--not fun but it's necessary.
 
Keona

Keona

Thanks Dustin and whysoserious.

I dont even know if I have Crohn's... and likely won't know until around June 8th when I have the MRI. The endoscopy is coming up in a few days and I don't know if they can tell that way. I googled it and they can see part of your large intestine. I know they put a lot of gas in to your stomach to view but seriously, I don't think they will need to. My stomach and under my sternum is plenty bloated to where it is painful.
You guys are right... I have to tell the people who have access to the tests.

.. thanks for your reply Dustin.. I am the kind of person who would walk around the entire block to avoid crossing the street just so I wouldn't have to tell my doctor :)....guess this will be a lesson in humility for me.
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Nyx

Nyx

Moderator
You get over the 'humiliation' pretty quickly with this disease! Your GI has heard everything, don't be shy telling him about what's going on in your butt! It's hard at first, but as others have said, it's better to let him know so he has all the facts and can diagnose you quicker, and easier. Btw, the most humiliating thing that happened to me was when my ET nurse came over to show me how to change my flanges and bags...omg....I took the bag off, took the flange off, and wouldn't you know it, Oscar decided he had to go! lol She just said "don't worry about it, I see it all the time" Well, la-di-da...lol

It's not that bad :) Can even be funny....
 
Keona

Keona

Hi Nyx...lol..that's pretty funny.. seems like it usually is when it happens to someone else :) I can see how it would be easier the more you talk about as I am finding quickly it is easier to discuss things in here. I think it is easier to discuss it with people on here b/c everyone on here has either experienced it or something similar. Face to face is a lot more difficult I'm sort of "hyper-private" about myself. It is true that they can't help me with things they don't know about.

I think it is hilarious you named your stoma. Why did you pick the name Oscar..any reason in particular?
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Astra

Astra

Moderator
Hiya Wendy

We leave our dignity on the doorstep when we see our docs!
I've had that pressure feeling down there too, many years ago, like everything was gonna fall out! I got myself genned up on where everything is inside, and our lady bits sit right behind the small intestine, low down, but behind, so during a flare, everything inflames including our lady bits, I don't have it any more, cos I had it all removed! YAY!
Anyhoo, my advice? get checked by the gynae too, to rule out any endometriosis or fibroadenoma, I was full of it, and they were 'glued' to my bowel. hence the pressure pains. Having a hysterectomy defo reduced my Crohns symptoms.
hang on in there Wendy
xxx
EDIT oh sorry Wendy, think I've just repeated myself, mentioned all this last time!
 
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Keona

Keona

YIKES... the more I hear about Crohn's the more I wish I have never heard of it! Your post is helpful b/c it is someone else who have had that feeling before. It is few and far between for me when it happens but it just comes out of nowhere and stops me in my tracks...afraid to move.
My Family doctor does all my pap tests except for biopsies, etc (I use to have dysplasia but have had 5 neg tests in a row so I'm good). I didn't have a gynocologist - do I just ask my doctor for one? Will the MRI see those "bits" (LOL) if they are right behind? (I'm getting an image of my small bowel). I had an ultrasound and transvaginal ultrasound done just before all this all started and it all came back neg.

I'm so confused...
5 more days until my endoscopy!
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Astra

Astra

Moderator
Hi Wendy

Yes ask your GP for a referral to a gynae, not sure about a MRI showing gynae bits?
I had an ultrasound and then a laparoscopy, which showed endos and a cyst.
This is what my gastro told me, don't know how true it is, that Crohns is 'gluey', that the small intestine becomes blocked and narrowed because they stick and glue together, endometriosis are also adhesions that stick to the outer cavities of the pelvic area from the uterus etc, so combine the both together, and every month when you ovulate and come on, serious pain and pressure!
Having said that, my gynae wasn't even looking for Crohns, never mentioned anything if he saw it during my op, just pushed all my bowels out of the way, and got rid of the lady bits and endos, did a clean sweep, then put all the bowels back in, then sewed me up! Done & dusted!
But I still had the pain! Then a gastro found the Crohns.
Two different specialists, two different diagnosis.
Process of elimination!
Ask to see a gynae Wendy and alleviate your monthly pains, best thing I've ever done!
xxx
 
Keona

Keona

I was put on birth control to see if it would help and it did a little but some months it did nothing. Now I just usually load up on the advil. I'm still in pain but it is manageable but I'm pretty much useless for 2-3 days.
I will ask her when she comes back off sybatical in June!
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Lisa

Lisa

Adminstrator
Staff member
Location
New York, USA
whysoserious said:
Hello Keona! I don't have an official diagnosis yet either, though I hope to recieve one soon. I too have severe menstrual pains. In fact, every cycle I have a flare-up. So not only do I have to deal with the sucky cramps, I'm stuck in the bathroom all day! Hang in there and welcome!
Click to expand...
Interesting - as I have suspected that happens to me too! Nothing too major, but a definite change in habits for that week or so!
 
Keona

Keona

I find for me it is major... at times wish I were dead... seriously. The advil takes the edge off. There must be a connection somewhere pasobuff. I have read a lot of women post the same thing on here. Did you try birth control and did it make a difference?
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Astra

Astra

Moderator
Wendy!

Watch the Advil, it's an NSAID, Ibuprofen, a big:nonono: no no for a Crohnie!
Honestly, I nearly killed myself taking Ibuprofen, cos I didn't know.
xxx
 
Astra

Astra

Moderator
pasobuff said:
Interesting - as I have suspected that happens to me too! Nothing too major, but a definite change in habits for that week or so!
Click to expand...
There is a connection girls, trust me
Speak to your gynae
xxx
 
Lisa

Lisa

Adminstrator
Staff member
Location
New York, USA
Keona said:
I find for me it is major... at times wish I were dead... seriously. The advil takes the edge off. There must be a connection somewhere pasobuff. I have read a lot of women post the same thing on here. Did you try birth control and did it make a difference?
Click to expand...
I haven't been on BC for a few years now (since I got pregnant while ON BC!).....can't remember if that made a difference at all before.......oh- my hubby stepped up to the plate so I don't have to worry about taking BC either......bless him!
 
Keona

Keona

So when I get my period what do I do? If I don't take anything I need to go to the hospital (throwing up, fever, immense pain) - what do you take instead? Isn't tylenol just as bad?
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M

misscris

I actually asked Dr about this. My question was why is it bad since it's an anti-inflammatory. The reason why Ibuprofen is bad for Crohnies is it thins the blood, and since a lot of Crohnies have bleeding issues... that can be bad. That is why they give us things like Pred, because it's a steriodal anti-inflammatory so it doesn't thin the blood. Make sense? :) Tylenol is ok.
 
Lisa

Lisa

Adminstrator
Staff member
Location
New York, USA
Welcome to the forum from another 'newbie'......

I too have developed some type of ezcema on my hands and feet - although I'm not sure what type exactly - I went to a dermatologist and they were'nt too concerned about anything......I'll maybe start a new thread about it!
 
Keona

Keona

Didn't they even give you anything to get rid of the rash?

Misscris, yep - makes sense why they don't want anyone to use advil or the like. My family doctor was the one who told me to take it. I know better now until I find out what is wrong.
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Lisa

Lisa

Adminstrator
Staff member
Location
New York, USA
A couple different cremes to try - which really don't work.....the one on my hand looks like it is clearing - I was hoping it was something (like poison ivy) in the hay I was feeding my horses!

Tylenol is definitely OK to use.....keep away from the advil- my dr scolded me a couple weeks ago when I told her I took some by accident - I was sick and that was what hubby gave me -
 
Keona

Keona

well, have my endoscopy tomorrow. I read on the pre. papers not to take aspirin for 5 days...figured advil was the same - makes sense about the bleeding Misscris. I thought because if something was inflamed, they didn't want aspirin to reduce the inflammation so they could see where the problem was. I will be happy to get this test over with and figure out what is going on. I was wondering if they could detect Crohn's with an endoscopy and they can't - guess I still have some waiting to do. Also, 2 weeks and 2 days since I quit smoking! (had quit for 10 years and started up again last Aug.)
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Astra

Astra

Moderator
Good Luck Wendy

Hope you get some answers soon, and some peace!
Well done for quitting the fags too! I can't, it's too hard, I just end up eating more!
xxx
 
Keona

Keona

Thanks Joan.
It is an easy test so no worries. Just want answers.
Have u tried the patch?..although it doesn't help with the eating part. They should come out with a patch that makes people lose their appetite. Then smokers can wear both.
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Astra

Astra

Moderator
Ha Ha Wendy good idea!! love it

No I haven't tried anything yet! still faggin away blissfully!

Let us know how you get on wontcha?

xxx
 
Keona

Keona

Still flyin on versed.... gotta get me some of that!
My endoscopy confirmed GERD as suspected and I have a hiatal hernia as we thought and inflammation in my esophagus and stomach. He took biopsies for H.pylori and for dysplasia. I told him about the rashes and he thinks on the back of my leg it is psorosis and thought the one on my hand looked odd.... blisters.
The stuff they spray your throat with is NASTY! but at least it wasn't a colonoscopy. Have to wait 7-10 days for the biopsy results and the next step is a PH test to prepare for surgery. (Nisson Fundowrap.) He is such a nice doctor - and is eager to find out if I have Crohn's.
Thats all....I remembered the entire test (I think)...
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Astra

Astra

Moderator
WOW WOW WOW
God I bet your head is cabbaged Wendy, all that in one day!!
Nissen fundo should hopefully give you lots of relief!
lotsa luv xx
 
Keona

Keona

Have to have a tube down my nose (mabe 2) for a day or two - A ph test. Anyone had one and what should I expect. Maybe its the versed but Im fine with all of it so long as they can fix whats goin on.
I feel awesome.
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Nyx

Nyx

Moderator
Keona said:
Hi Nyx...lol..that's pretty funny.. seems like it usually is when it happens to someone else :) I can see how it would be easier the more you talk about as I am finding quickly it is easier to discuss things in here. I think it is easier to discuss it with people on here b/c everyone on here has either experienced it or something similar. Face to face is a lot more difficult I'm sort of "hyper-private" about myself. It is true that they can't help me with things they don't know about.

I think it is hilarious you named your stoma. Why did you pick the name Oscar..any reason in particular?
Click to expand...
I had a contest on here - Help Me Name My Stoma...farm picked the winning name! He's named after Oscar the Grouch...aka Oscar the Pouch....lol It just seemed appropriate :)
 
Keona

Keona

Wow...you really ARE in to polls.... that is clever...Oscar the pouch! Well, at least you have a great sense of humour about it.
I saw a photo of my brother who I haven't seen in about 16 years and noticed he has a stoma. Not sure if it is temporary or permanent - Crohn's as well. I can guarentee he is miserable (along with making everyone else's life miserable with it.)
Like several have mentioned, if it ever came down to it I would't be as afraid after having read your posts.
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W

whysoserious

Astra101 said:
Anyhoo, my advice? get checked by the gynae too, to rule out any endometriosis or fibroadenoma, I was full of it, and they were 'glued' to my bowel. hence the pressure pains. Having a hysterectomy defo reduced my Crohns symptoms.
Click to expand...
Keona, I went to my gastro yesterday and he said the exact same thing!
 
Keona

Keona

To go to your gynae?
Thanks for letting me know - I will ask my doctor about it!
Wendy
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B

bethyd78

Keona
I have had the ph test done. I did not have anything during the test infact I drove home. I remember they measured pressures and phs during the test. I had a tube into my esophagus. I had the neissen fundiplication. I think that was in 2001 I remember I had to follow a special diet for about 6-8 wks after the surgery it wasn't too bad. I had it as an outpt. Just make sure you get pain meds. to take home. I thought I would be fine and had to call the Dr. the next day. I would probably get them filled ahead of time and have them waiting at home. I believe I would do it again. It fixed my symptoms I still take nexium everyonce in the wild. Remember you can't ever throw up after the surgery. That is the one thing I wish wasn't stuck with. B/c sometimes I wish I could throw up. I take phenergan regularly.
 
Keona

Keona

You had it as an outpatient??? WOW! Where do you live? I think you have to stay in hospital here for about 2 days. I don't know when I'll be getting that done but it has been mentioned as the PPI's don't work at all. Yes, I was told that I won't be able to throw up but it might be worth it - I don't want Barrett's esophagus or the pain anymore. Since Crohn's affects anything from your mouth to anus, do you attribute this to Crohn's or something completely separate?
Thanks for the information bethyd
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Dustin

Dustin

I had a ph test done a dozen years or so ago... I went into the office, they handed me a glass of water, and told me to drink the water as they fed the tube up my nose and down into my stomach. Once it was there, they wrapped the tube behind my ear, and attached it to a mini computer (the size of a MP3 player), and clipped it to my belt. I then got to go home. I kept it in there for a day or two, then went back into the doctor's office and they pulled it out. Wasn't a bad experience at all - just felt a little weird when swallowing, as I could always feel the tube at the back of my throat.

Good luck and best of health.
 
B

bethyd78

I had continued bronchitis they believed my stomach was emptying into my lungs and I was aspirating. I had it done laparoscopically. I had it as an outpt. I live in Mandeville, La.
Bethyd78
 
Keona

Keona

well, Im just glad some people have good G.I's. I hear a lot of the frustration with people not liking theirs :)
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Keona

Keona

STILL struggling with hip and pelvic pain. Went and bought a thermometer and I sort of have fevers at night, but nothing over 100. Hurts to stand for more than 5 minutes and I shift weight to the left side. All I do is sleep and when I told a doctor she gave me Wellbutrin. Wendt and bought the drug and when I got home I read you shouldn't take with the patch...which I am on (3 weeks, 4 days smoke free). This drug is supposed to give me lots of energy (but so was the last). The doctor wanted me to make another appointment for tomorrow because even though I wasn't able to scream for help like some suggested, I was persistent. I'm not sure what a general GP can do tomorrow (my GP is on sabatical so it is someone I have seen once several months ago.) My GI doc suggested if it got "bad" enough to go to the hospital but I don't feel it's "bad" enough (and I hate being a patient). The pain is bareable so long as I sleep all day and don't walk/stand for too long. I do feel it just "resting" but it is just a nagging pain.
I am getting so frustrated.
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Keona

Keona

okay, so just going to babble because I am very frustrated. I went to a new GP today (saw her once before) and she told me the same thing... the cant move up an MRI unless it is a medical emergency..i.e: I'm in hospital. What she did help with was she told me she isn't convinced that it is Crohn's and asked for permission to call the hospital where I need to get the MRI done to see if she can have other pictures taken as she thinks I have endometriosis. So, I am going to have more than the small bowel imaged so if it isn't Crohn's, I won't have to wait another 3 months for another MRI. I didn't have to ask to see a gyne as she wants me to go see one once my MRI are back. I suppose it is a step in the right direction after what people have suggested to me. I also think doctors don't really know what they are doing. I am disillusioned by the entire medical system. I just want to know what is wrong with me!!!!
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K

kristenmickel

Guest
It's really good to see you all..
Just wanted to say hello!
From new member...
 
Astra

Astra

Moderator
Hi Wendy

Yes it is a step in the right direction, you might have to go down the route that I did to find Crohns (if u do have it) first the gynae, then the gastro!
If there are endos there, they might be able to remove them using a laporoscopy, and hopefully this will ease your symptoms dramatically.
If it's anything else, and they talk about hysterectomy, you can always PM me for advice.
take care
xxx
 
Keona

Keona

I guess the part that bothers me is that the entire time I have been complaining about my hip and pelvic area/abdomin, my GP told me things from it is probably arthritis to get a new bed. The worst part is she told me to take advil for my pain 'knowing' I have acid reflux/ GERD. In patients with GERD, advil can cause gastritis....which I was just diagnosed with the endoscopy. Joan also told me that advil is the worst to take when you have Crohn's. I even told her a few times the advil is hurting my stomach and she said there is nothing else for me to take. The same doctor labelled me anorexic about 5 years ago. When I said I didnt have it they told me I was in denial...that anorexic's have distorted body image.
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Astra

Astra

Moderator
OMG
time for a new doc Wendy, this one IS NOT LISTENING! New bed my arse!!
how about an ibuprofen heat pad! or ibuleve, which is a gel containing ibuprofen (Advil) these wont enter your stomach but are great alternatives, and you can take paracetamol and dihydrocodeine with the gels.
or codeine phosphate? diclofenic is good too (voltarol) or co-codamol
There are loads of good painkillers out there, your doc is an asshole!
xxx
 
Keona

Keona

Thank-you for the suggestions Joan... I have no idea what they are but i will definitely take the list I wrote down to my pharmacy. I was also called with the results of my biopsies today..no cancer, no celiac disease, no candidas or H.Poloryi. They scheduled me for a colonoscopy and the 24 hr PH test after I have the MRI..so either way, I have to wait until after June 8th.

going to the pharmacist...
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Keona

Keona

What about back pain? I experience some lower back pain but it comes in waves (not every day). This is also new to me. I am okay once I am up and moving, but once I sit down for a period of time and then try to stand-up ..well, let's say it is very difficult and painful (if I am able to). I now know what the term "spasms" mean... my body literally shakes a bit. When I wake up it is sore as well until after I shower.
Is this common?
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Hedgehog

Hedgehog

Hi Keona,
I get low back pain some days which I think is related to the Crohn's. Like yours it goes into the hip/back and front pelvic area. Mine goes away if I do some exercise - it's gotta be aerobic though...I think it's because it gets the synovial fluid pumping! Works better than pain killers for me. I read that sacro-iliac pain is common with Crohn's and that the way to tell that this is what it is, is to see if it goes with exercise. I try and do a bit of Pilates every day to keep my back strong. I found that if I exercise every day I get much less back trouble. Hope you get some relief soon,
Gail
 
Keona

Keona

I try to do yoga and although at first it is painful, I find that it does go away.
When I went to the doc about hip pain they sent me to physio and they told me it was sacroiliitis - thats when I was told to get a new bed...lol.

I will stick with the Yoga (I go tomorrow).
Thanks for the link Joan. I will read it and search for the connection.
Thanks for the replies.
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Keona

Keona

I am sorry for all the questions but when I google it - i google myself in to a dark place :(

When I woke up this morning I had a canker sore on my tongue and this white stuff on my tongue. I noticed the white stuff as it peeled off my tongue like a layer of skin. I have had this before.

I also just pooped after 6 days and it looked like there was toilet paper in it. I can assure you I did not eat any toilet paper. It was white tissue -like. This is the first that I have ever noticed (i never looked at my poop until all of this.)
Any thoughts? It wasn't painful.
I'm starting to really wonder about my body.
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Hedgehog

Hedgehog

Hi Wendy,
It sounds like you're run down...although I haven't had the toilet paper in the poo thing so not sure about that.
I feel for you at the moment as you're still waiting for a diagnosis. It really really did my head in wondering what was wrong. I didn't want to have Crohn's but it was a relief to know what my symptoms were. I've also googled myself into bad places many times....but I have to say that I think my imagination is always much worse than reality. Even if you have Crohn's, it's not the end of the world. There will be good times ahead.
I also started with the hip pain the same time as my bowel symptoms. I too had a laporoscopy and saw a gynae. He found cysts on my ovary but he doesn't think they should be causing me pain. I'm pretty convinced that the Crohn's is causing it. I read that inflammation in your pelvic region can be difficult to pinpoint because there are lots of nerves in there which supply the same bits - and inflammation can spread around a bit. Anyway, like I said, I do aerobic exercise (hill walking) most days and a little Pilates. It helps a lot.
If your MRI doesn't show anything, how about asking for a pill cam endoscopy. That's what found my Crohn's - all other tests came back normal.
Hope you're feeling a little better now. Try not to worry too much. You will get there in the end. Sending you a hug!
Gail
xx
 
Keona

Keona

Thanks Gail
I am feeling run down as I have done very little the last several weeks - no energy and my hip and abdomin always hurts. I am going to attempt yoga tomorrow though.
I am freaked out as I have spent a year in hospital. I don't mind working in one and visiting but not as a patient. I went in due to a trauma so it is completely unrelated but I have very bad experiences. Everywhere I read most people are admitted or has had surgery of some kind. I don't mind the tests if they are in hospital as a day thing.

I am on cymbalta and now just started wellbutrin (will help with smoking and is also an amphetamine). Hopefully this will give me some energy as I am completely depleted. I don't want it to be Crohn's but the more I read posts here, the more I wonder.
Thanks for the hug :)
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