What were your symptoms

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girlinterrupted

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what were your symptoms

Just curious to know what other peoples symptoms are, and main symptoms and what form of stomach disease were you actually diagnosed with?

Kay x :hug::ghug:
 
I started developing symptoms during the beginning of my 2nd trimester of pregnancy with my third child. Nausea, diahrea (20-30 times a day), exhaustion, severe urgency (went thru a lot of pairs of undies). Eventually, the diahrea had mucus and blood...then sometimes it would only be mucus and/or blood coming out. I complained a bit to my gyn, but he chalked it up to the pregnancy and said I should see a specialist after giving birth. Well, with a newborn and two other children and a full time job, I continued with ignoring it until my "baby" was three. At that point I had had enough with being sick and weak...I even fainted a few times at work (from the dehydration and anemia). I had lost about 40 pounds (still wasn't skinny, but was a very large drop in weight in about 4 months time) and had no appetite at all. I forced myself to eat salad (bad choice for IBD) and then would be pretty much tied to the bathroom the rest of the day and overnight too. I finally had a colonoscopy which showed like Crohns but biopsy was "inconclusive". So, the doc called it ulceritive colitis. Then, after being on certain meds and having a bout of something else (called epiploic appendigitis) and having 2 CAT scans, she is calling it Crohns. So, unfortunately, I have no idea what I have. What I do know is that I've been under a specialists care for a year, which means I've been in a flare for 4 years now without a break. Hope this helps!
 
My initial symptoms were vomiting, fever, diarrhea, unable to keep things down, constant weight loss, and chills. I was told it was just a flu, then given a blood test (they told me it was not crohn's). As I got worse and ended up in the hospital, with sever dehydration. That's when they preformed a colonoscopy and diagnosed me with crohns.
That is the short version of it. If you have any other questions let me know :)
 
I couldn't tell you my initial symptoms because I got diagnosed at 2 with crohns, but at my worst I've had symptoms of extreme weight loss, lots of canker sores in the mouth, loss of appetite/energy.

Currently my only symptom is diarrhea and I would like to change that somehow
 
Hi Kay,
I was diagnosed with Crohn' s disease. My symptoms were: stabbing pain in my right lower abdomen, severe fatigue( I felt like I coulda slept 24 hrs a day), and weight loss.
 
My first systom was the big D about 15 years ago, then I started to loss some weight very slow (i was about 190 5'10") over a period of 12-13 years I had "D"all the time and the Dr. said I had IBS, this all started when I was about 45 years old. I retired in 08 and was around 160lbs but was tierd all the time. I stayed at 160 till 2011 but along the way I always had heart burn "D" and belly cramps, the last 6 months before thewy said I have crohons I had really bad cramping after I would eat and then take a nap, when I woke up, within 5-10 min it was really bad I would take some Gas x and it would go away. In 2011 I lost 20lbs and got the nerve to go to the Dr. they did a colenostopy and found a small lump on my apendix but said my colin was fine saying it was IBS but my apendix had to go. The went to take it out and found a mass that was not seen on the CT of crohns right where my small and large ints. meet. They did a resection and 7 days later it came apart and I went septic, belly full of SH#$ and Puss, bask into the OR and came out with a ostomy bag. That was about 100 days ago. I went down to 121lbs but I'm now back up to 145lbs. I was not much fun but I do feel ALOT better. They will reconect me in about 120 days. I had a hard recovery because of my age,(61) I was in very poor health and didn't know it, and because being septic I got alot of absess but luck none of them had to be drained. My wound is all but healede. I have one area that is being a bit stuburn but it should be done in about 10-12 days. It's been a hell of a trip, mostly becauce of the 1st operation coming apart and going septic, the Dr. told me about 3 weeksw ago that they only gave me a 20% chance of makng it through the 2nd operation. Sure glad he didn't tell me that back then. LOL, that would have really freaked me out. In the back of my mind I think about going septic when they reconet me but the Dr. said thats not going to happen, I am going to be very healty, but it still makes one think crazy things sometimes. I try not to go there.

Glad its almost over. Then I can get on with my retierment. I own a Production Co. and book bands on US tours. I can't wait to get back on the bus and tour with some bands again like I did in the 70's and 80's. Se ya.
 
My symptoms were ,sharp stabbing pain lower right abdomen ,sleepless nights sweats, and really tired all the time. A lot of D and sometimes C aswell.Blood and mucus in stool. Aching joints and now pain has spread to past my naval. Dizzy when eating is a new progression.
have a review in hospital next week with GI but as yet undiagnosed.
I feel it has progressed sugnificantly since Xmas.
 
Sarah's symptoms developed over an 18 month period and mainly consisted of upper abdominal pain, headaches, vomiting, sore eyes and aching knees. Other than the aching knees the other symptoms would occur all at once for about 24 hours and then go away for about a month, then they became fortnightly, then weekly and finally in the last 10 days or so before diagnosis they were consistent. Emeregncy surgery was what gave her her diagnosis.

My son on the other hand only had a week of obvious symptoms which were a couple of random vomits and nausea/loss of appetite. He was diagnosed within 2 weeks. Sarah's legacy no doubt.

They both have Ileal Crohn's.

Dusty. xxx
 
My symptoms came on very suddenly following a viral infection and copious amounts of ibuprofen. Incredible stomach pain and vomiting every night. And sudden weight loss. I ignored it for a week figuring it was a stomach bug. But when I went to the local walk in centre late at night because it hu too much to lie down, they thought it might be my appendix and got me admitted. Several tests and a discharge later, a diagnosis of Crohn's.
 
I started out with infections that took very long to heal for minor cuts. Then, after one meal, I had diarrhea that lasted 4-5 weeks with weight loss causing severe dehydration, combined with other problems (ovarian cyst, heart problems due to lack of potassium). I was finally hospitalized and after a barage of tests diagnosed after a colonoscopy and endoscopy.
Weird, but besides the ovarian cyst, I cannot remember any major pain.

Reading some of the stories on this forum I am just glad that I got dx'd rather quickly.
 
I started about a year and a half ago. Had D&V, pain in lower right quadrant of abdomen, frequent bowel movements, mouth ulcers and sores, bloating and erm...gas. They first put it down to IBS and gave me buscopan and colpermin. Finally got referral to gastro. Had ultrasound, gastroscopy and colonoscopy. They found granulomas in colon and diagnosed colonic crohn's (terminal illieum clear). Put on Pentasa and steroids. They didnt work. Then I was put on prednisoline, azathrioprine, ferrous sulphate, ad cal, and higher dose of pentasa. Still symptomatic and now have fatigue. Just had a barium meal and follow through and I am off for the results on Monday. Wish me luck!!
 
Symptoms started Dec/11. Very painful bowel movements, blood in stool, canker sores in mouth. Was treated for hemorrhoids. Ended up in hospital January/12, after passing so much blood i passed out on the floor. Was then diagnosed with Crohns after my colonoscopy. Had no diarrhea, just no appetite.
Current meds:
Imuran 100mg
Prednisone 40 mg
cipro and flagyl
paxil 10mg
birth control
 
I had D every day for over a year, severe abdominal cramping, weight loss. GP diagnosed me with IBS without even testing, but I didn't feel that he was right. So found a G.I. in the phonebook and went to him, he scheduled a colonscopy and took a biopsy. Had no idea why he did a biopsy so spent a week freaking out wondering if he thought I had cancer, but was told the biopsy was to determine if it was just a normal ulcer in colon or Crohn's. It was Crohn's.
 
Everyone seems to have such similair symptoms .. Blood in the stool is one thing I keep hearing, is this meant to happen with crohns? I have never noticed this myself before only when it has been sore to go and when wiping. (Sfti)
 
Not everyone has blood as a symptom, especially if your Crohn's is higher up. Neither of my children have ever had blood as a symptom.

Dusty. xxx
 
Yeh dusty, this is what I'm starting to determine, as my pain and problems are in the duodenum. How are both your kids doing at the moment?x
 
Its such a strange situation, as when I'm not having a flare I pretty much feel fine, except tiredness, the pain is at bay etc, I feel as though I can do anything, but when I'm having a 'spell' I'm sooo ill, I shake, tremendus pain, sickness, diarhhea, and a general feeling of feeling completely shit!!!
 
I think that's the thing hun. For many people remission means a blessed return to normality, what those without Crohn's, or any other chronic disease, feel every day of their lives. Then you flare and the pain and feeling crap comes back with a vengeance. :voodoo:

Dusty. xxx
 
DustyKat said:
They are doing fine thanks! Both in remission and me wishing it never ends!

Dusty. xxx
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That's really good to hear. Is IBD in your family or just your children? The reason I ask is my sister has been getting the same problems as me for a few years, nowhere near as bad as mine but she seems to get these flares where she says to me she feels sixk or her tummy don't feel right, that's it, once she has said that she has D really bad, sickness, screamin with pain (same place as me) but her 'attacks' last for only a couple of days an ware off, whereas mine can go on for weeks and after each one I never quite feel right.xx
 
Other than my two the only other person in the family that we know of with Crohn's is a first cousin to my husband.

As you know everyone is different and it can affect family members differently both in symptoms and severity. My daughter, for most of her undiagnosed period, was like you sister, symptoms for 24-48 hours and then nothing, back to normal for 2 or 4 weeks.

You having IBD means there is a 30% chance your sister has it too.

Dusty. xxx
 
DustyKat said:
Other than my two the only other person in the family that we know of with Crohn's is a first cousin to my husband.

As you know everyone is different and it can affect family members differently both in symptoms and severity. My daughter, for most of her undiagnosed period, was like you sister, symptoms for 24-48 hours and then nothing, back to normal for 2 or 4 weeks.

You having IBD means there is a 30% chance your sister has it too.

Dusty. xxx
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I've had these symptoms for 11 years and I had colonoscopy an endoscopy when I was 15 and they said it was just gastritis, put me on the meds for it but I'm still getting these flares, so now they are refering me back to the GI and prob more cameras so I'm still "undiagnosed" but with me having this and my sister for a while too I'm not convinced of gastritis. Bearing in mind when I had the cmeras at 15 (now 25) they said everything was normal it wasn't a year or so later that they said its 'probably gastritis' the hospital are not thorough at the time also they were saying its more than likely physcological! Right so I wake up telling my body I want diarrhea and severe pain to the point where I'm rocking back and forth on the floor? Lol :yfrown::yfrown:
 
Oops sorry, I didn't realise you were undiagnosed. :(

Scopes will only ever show a portion of what may be happening, they effectively leave almost all of your small bowel untouched and that's a helluva lot of bowel!

I know it's hard hun but keep pushing for answers until you get the right one. It wouldn't hurt to have repeat scopes but they should also do some imaging either with a enterogram and/or a pill cam.

Psychological, what a bunch of :quack: 's!

Dusty. xxx
 
DustyKat said:
Oops sorry, I didn't realise you were undiagnosed. :(

Scopes will only ever show a portion of what may be happening, they effectively leave almost all of your small bowel untouched and that's a helluva lot of bowel!

I know it's hard hun but keep pushing for answers until you get the right one. It wouldn't hurt to have repeat scopes but they should also do some imaging either with a enterogram and/or a pill cam.

Psychological, what a bunch of :quack: 's!

Dusty. xxx
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Haha, don't be sorry I obviously didn't say! Sorry to be blonde but what's an enterogram? So many ppeople say scopes don't show much but I dont get why when they go into your insides!!!!!
and. I remember people saying before that they don't like doing pill cam incase there is a blockage or abstruction as it could be dangerous if it gets stuck? What did your children have and how long did it take for a diagnosis?x
 
But they only reach so far. A colonoscopy is able to see all of your large bowel and into the start of your small bowel from that end and an endoscope can see down your oesophagus, into your stomach and through to the start of your duodenum. Your small bowel is approximately 7 metres long so that probably leaves at least 6 metres of bowel that can't be seen.

An enterogram is a type of CT/MRI scan that is specifically designed to visualise your small bowel due to the type of oral contrast that is used. It is very sensitive at picking up inflammation and some types of abnormalities. With the pill cam you can have a dummy run if they suspect you have strictures (narrowing). If you had an enterogram first then that should pick up if a pill cam was contraindicated. If the pill did get stuck it would have to be surgically removed.

My daughter was never suspected of having any form of IBD as her symptoms were atypical so she never even had scopes. She did have repeated blood and stool tests and a CT scan plus ultrasound but they all returned normal results. She was diagnosed on the operating table after 18 months of symptoms.
My son was diagnosed in two weeks, Sarah's legacy no doubt. He was "off" for 1 week, that was it. I asked for inflammatory markers to be done and his CRP was elevated. They repeated it a week later and it was higher again. That day the GP palpated his right lower abdomen for about 10 minutes and said he could a mass and he thought he had Crohn's. An ultrasound confirmed thickening of the terminal ileum, that was followed a few days later by a colonscopy/endoscopy that confirmed he had Crohn's in the terminal ileum. The GI didn't want to push through the area so he had an enterogram the next day that accurately determined the extent of inflammation.

Dusty. xxx
 
Oh I see. Well where I get the pain is epigastric, that region. Rarely do I get pain lower down, but I do get pains down the left side. So really it would be the stomach and duodenum area that would need to be checked first I would think. I do get cramps lower down sometimes.

Why was your daughter on the operating table, was she that bad? Tbh I don't know how you have coped. I would be rushed into aNe so many times years ago my mum used to say she didn't think I would get through the night sometimes ....... ( As we openly talk about it now) I would have fits and seizures because of the pain, my god the pain ...... Something I wouldn't wish on anyone!

Do they even do the pill cam in the UK? I thought they only really did it in america, at the moment I have asked my gp to check pancreas as that's the kind of area I get majority of pain so will see what the bloods say. To be honest, the blood tests in UK are rubbish and never seem to show anything to we will see, by the way I dunno if I mentioned over 10 years ago when I was in and out of hospital all they ever did was try and manage the pain they NEVER did any testing to find out why I kept getting these spells of pain diarhhea and sickness. It was only one day my dad got so fed up he demanded the cameras to be done that's why they did it.

If I get bloods done for inflammation markers what should I ask for that's most specific for IBD? And do they only show if your having a flare up? Xxx (thanks for your help and sorry for all the questions) x x
 
She was septic and because they could find no other answers and it was urgent they opened her up. They then found her bowel had ruptured. Because her disease is in the terminal ileum I feel a scope would have found the problem.
Until the last 2 weeks before surgery all of Sarah's pain was in her upper epigstric region and never anywhere else. In the last two weeks it became constant and at first over her right kidney and down that side and finally became generalised over her abdomen.

I have read on here that they do but there is quite a long waiting list or maybe it depends on what trust you are in???

That's awful that wouldn't do any testing all those years ago until your Dad kicked up a stink! Grrrrrrrr.

The blood tests for inflammation aren't specific for IBD but a CRP and ESR will show if you do have inflammation happening, unless you are like Sarah and they never did! :eek2: They should only be elevated if inflammation is present but again, they are not specific to IBD so potentially any inflammation in the body could cause elevated results.
There is also a stool test that can be done that is specifically used to indicate the presence of inflammation in the bowel and is used by some as a diagnostic tool for IBD. It is a caloprotectin test.

Ask all the questions you need hun. :)

Dusty. xxx
 
Oh god .... How is she now? Does she cope ok? Did they have to remove any bowel or anything? Yeh the pain I get is epigastric, its awful, its pretty much there all the time but when it flares I know about it! Sometimes it feels like its burning an I have to hunch over pretty much all day, I have a 1 year old son so when it starts its really hard work as he is into everything haha! And I'm single so don't live with his dad although his dad sees him he works and my son is with me 24/7 so I need to be ok! I relapsed when he was 6 weeks old and did everything I could not to be in hospital again as he needed me and I was breast-feeding, I need this sorted once and for all enough is enough. I think the problem with the uk is the nhs system is reluctent to pay for any tests so they fob you off with pills unless ur about to die! Sorry to be blunt but that's how it is! Did you say your childrens pain was upper? Where mine is? Xx
 
But what's strange is if her crohns is terminal ilium how come she has upper abdo pain? Wouldn't it be at the bottom? This is what's annoying about crohns nothing matches up! Lol x
 
She has been in remission since her surgery in July 2006. They did have to remove about 70cm of bowel. She had her issues post op but over the years she has worked through them and now seems to have everything under control. :) Matt's pain wasn't epigastric but Sarah's was. God I hope I'm not scaring with this!

It must be so difficult having a little one to take of. :hug: Pancreatitis, whether it be acute or chronic can be a extra intestinal manifestation of IBD. Sarah was diagnosed with that one week before her surgery but it was a red herring, in the sense that it was secondary to what was really happening. Another thing you should look into is your gallbladder.

Dusty. xxx
 
Sorry just saw your last post. I think it had more to do with the extra intestinal manifestations??? I don't really know to be honest, just another of the enigma's of IBD! Ugh!
 
Girlinterrupted - I know your looking for a diagnosis and this can be very difficult because there isn't a simple test to confirm or rule out the disease. The diagnosis is made through the combined results of a number of tests. The first thing you should do is get referred to a good GI specialist. I then had a gastroscopy, ultrasound, blood tests and finally a colonoscopy. The gastroscopy was clear, the U/S showed a thickening in the transverse colon, the blood tests showed a high C reactive protien (CRP - Indication of Crohns) and the colonoscopy showed granulomas in the colon. Putting all these results together a diagnosis was made. I suggest that you speak to your doctor about having these tests. Upper gastric pain might not me Crohn's. There might be something else causing your condition. You need to get it either confirmed or ruled out. Im now having tests to assess the extent/severity of my condition but its taken a long time to get here. I hope you get somewhere soon!! Good luck.
 
Hellwell said:
Girlinterrupted - I know your looking for a diagnosis and this can be very difficult because there isn't a simple test to confirm or rule out the disease. The diagnosis is made through the combined results of a number of tests. The first thing you should do is get referred to a good GI specialist. I then had a gastroscopy, ultrasound, blood tests and finally a colonoscopy. The gastroscopy was clear, the U/S showed a thickening in the transverse colon, the blood tests showed a high C reactive protien (CRP - Indication of Crohns) and the colonoscopy showed granulomas in the colon. Putting all these results together a diagnosis was made. I suggest that you speak to your doctor about having these tests. Upper gastric pain might not me Crohn's. There might be something else causing your condition. You need to get it either confirmed or ruled out. Im now having tests to assess the extent/severity of my condition but its taken a long time to get here. I hope you get somewhere soon!! Good luck.
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Hiya thanks for your reply, useful info, well I was diagnosed with 'inflammation' over 10 years ago an they said it was mild, but wasn't sure what was causing it so they just said it must mean gastritis, but I am on the meds (double dose) for gastritis, and still 'flaring' every now and then, I'm just not sure what else could cause what I'm going through, they didn't do many tests 10 years ago, infact one thing they did tell me was I had a high white cell count, that was it and when I was in and out of hospital all they did was try to manage the pain (which wasn't even done very well). So now I'm going to fight it as this is affecting my life and now my sons as I can't do much with him due to the pain, x
 
It shouldn't be the case but you really do have to keep at it!! Sometimes it feels like your pestering but its important that you get yourself sorted out.
Keep going!!!
 
Stomach pain. Then very quickly I had diarrhea, blood in stool, pale, and losing weight fast.
 
My first symptoms were abdominal pain and diarrhea with blood and was diagnosed with Crohns Disease in the terminal ileum with has since spread to the large bowel as well
 
Don't honestly know when my symptoms first started, I started getting symptoms as a kid. But, I do remember running to the bathroom during & right after dinner. Always was the last one to finish eating. I was first diagnosed at 18 with Ulcerative Colitis/IBD by my original doctors with inflammation in the colon.

When I changed insurance last year in 2013 my new GI did his own grope/grab & diagnose along with a medical test. I still have Ulcerative Colitis/IBD, but now the direct diagnosis is Ulcerative Proctitis and the inflammation is actually in the rectum.
 

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