IBD presentation

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Med
New Member


Date Joined Mar 2008
Total Posts : 13
   Posted 3/21/2008 1:18 PM (GMT -6)   

I am a medical student from the UK and am finding it really hard to understand the nature of Crohns and ulcerative colitis. Basically, I have been to a lot of clinics, seen lots of patients and there seems to be a big variation in presentation but I am trying to understand and differentiate it from IBS type symptoms, which can be difficult and therefore mistaken for [I don’t want to miss something if I can help it]. I am aware that some ‘red flags’symptoms such as weight loss, fever, and blood are not seen in IBS but I have seen drastic changes in weight even with IBS patients so sometimes presentations may not be classical. I really wanted to know how people presented when they first went to their GP with their symptoms. From the questions below I am mainly concerned with first presentations to the doctor and what happened at this stage before any special tests such a colonoscopy were performed and a diagnosis given:-

 

First presentation symptoms [e.g. constant abdo pain, bloody diarrhoea, weight loss, lethargy and back pain] :

 

Duration of them first symptoms [basically did these symptoms carry on until a diagnosis was made and medication was given or did you spontaneously go into remission. With this question include the time before presenting to the GP that you had symptoms also; was it an emergency department presentation]: 

 

Abdominal pain [nature of the pain- sharp, dull, burning, achy, general upset, other- was there pain on touching your abdomen; associated with eating]:

 

Where was the abdominal pain [could you localise it with a finger; generally lower abdomen; around belly button; above belly button, other]:

 

Abdominal masses [e.g. mass felt in lower left/right abdomen]:

 

Blood in stool [e.g. blood as if cut yourself; tissue type blood; mixed in with stool; one day blood the other day not, clots, other]:

 

Stool consistency [people say diarrhoea but one definition may differ from anothers definition- literally water like, porridge like, constipation and diarrhoea mixed, constipation, other]-

 

How many times during the day would you go to the toilet:

 

Mucus:

 

Fever:

 

Other pains [back, legs, ribs]:

 

Blood tests [more specifically, was there a change in your ESR or CRP]:

 

Other abnormal blood results:

 

Extraintestinal manifestations [eye problems, skin tags, fissures, fistulas, rashes, mouth ulcers]:

 

Weight loss [how much and over what duration of time; was you eating the same amount or even eating less or more]:

 

Anything else that might be an interesting point to note about your presentation:

 

Thank you for your time in answering my questions. Honestly, even consultants who have been doing their job for years find this hard to pin down and a lot of people in healthcare just miss it completely and put it down to psychological issues especially if the presentation is atypical.

Jsanders505
Regular Member


Date Joined Mar 2008
Total Posts : 94
   Posted 3/21/2008 1:24 PM (GMT -6)   
psychological issues?

Med
New Member


Date Joined Mar 2008
Total Posts : 13
   Posted 3/21/2008 1:40 PM (GMT -6)   

Without performing a colonoscopy

-Stress
-A mountain out of a molehill
-Depression
-Hypochondriac
-Heart sink patient


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 3/21/2008 2:06 PM (GMT -6)   
I went to my GP and was 24 years old and think Dr.s know best all the time (WRONG!). They are people and make mistakes too.

Me: I am having bloody diarreah, and am going to the bathroom several times a day and have urgency. Also, my Mother had Ulcerative Colitis and had an ostomy surgery and her colon removed.
GP: You don't have colitis, did you eat Wow brand potato chips?
Me: yes one bag a few months ago
GP: You don't have colitis even though your Mother had it, you have this from eating Wow chips, they contain Olestra. Goodbye.

3 months later
Me: I need to see someone asap
GI office: You need to wait 3 months.
Me: I have toilet bowls full of blood 5 to 6 times a day, I don't know if I will be alive in 3 mos.
GI office: Can you come in tomorrow?
Me: yes

At the appt, touched my stomach cost me $270 for 5 min of specialist time (just changed jobs and new ins. did not kick in yet).
made another appt, Doc did a sigmoidoscopy or something in his office, he knew I could not afford much and actually wrote down he did a cheaper test (that was nice). After the test.
Doc: You have ulcerative colitis
Me: ok, what does that mean to me (as I start bawling my eyes out).
Doc: here's a pamphlet and by the way I am retiring so you need to find another Doc. Goodbye.

Also, I got Minimal Change Disesase (Kidney Disorder) from taking 5ASA drugs, if any Doc's have patients that have edema - especially ones that take 5ASA's they need to check their patients protein spillage. I brought this up at every Dr. appt for 7 years, made Dr. appts just for the edema! No one helped me, until one day my GI decides to check my proteins and wham, that's why I have had edema for 7 years. Also, I had to be the one to make the connection to the Doc's that says hey I have MCD, the pills I am on can cause it and gee, I have had the symptoms since I started taking it, I should stop taking it don't you think - they agreed. If you look up the side effects for 5ASA's it mentions 'renal', but not edema otherwise I would have made the connection years earlier. - sorry for going on but I am still very upset by being undiagnosed when I KNEW there was a problem.

Also, the first flare, I don't remember any mucous, just blood and bloody diarreah and I lost maybe 10 pounds during that flare and my last big flare, but that was it.
Beth, 32 ~ Major Flare Sept/Oct 07 ~ almost in remission
UC dx'd March 2000 (30 cenitmeters as of 2005-proctosigmoiditis)
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd Sept 2007 - partial remission since 03/08
Prednisone 30mg 1xday (taper 5mg a week from 60 = ), Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fursomide 20mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.
Pre-Diabetic from Prednisone use - Low carb/sugar diet & exercise.


:)
Regular Member


Date Joined Feb 2008
Total Posts : 182
   Posted 3/21/2008 3:01 PM (GMT -6)   
First presentation symptoms: Had these symptoms for 12 months before seeing a dr. about it. Suffice it to say, that i was in deep denial. Felt fine, though when had to "go", would get tenesmus, a crazy cramping pain that was so debilitating that I'd have to "freeze" in one place sometimes until the pain passed then make a break for a restroom. Had super-duper crazy, debilitating pain when passing. It was so bad, i bet going through labor feels like that. Sometimes I just felt like giving up and I'd be better off if my gut burst, because it was too painful to pass. I'd breathe similar to the Lamaze technique just in order to do it. Bloody diarrhea, never had a solid BM until it was dx'd and took meds. Moderate lethargy, though i'm a night owl, so i could never tell what the fatigue was from. Lost cose to 25 lb. the last 2-3 months before bein dx'd. Very pale skin, sometimes quick pulse, which doc. said was from serious anemia. Last 3 months before dx, had nightly fevers of 99.0 to 103 F.



Duration of them first symptoms [basically did these symptoms carry on until a diagnosis was made and medication was given or did you spontaneously go into remission. With this question include the time before presenting to the GP that you had symptoms also; was it an emergency department presentation]: Symptoms carried on, unabated until dx and meds. Spontaneous remission sounds like spontaneous combustion...and as likely...

Abdominal pain [nature of the pain- sharp, dull, burning, achy, general upset, other- was there pain on touching your abdomen; associated with eating]: actually got pretty aware of the nuances of what my body was feeling. I'd get a :"warning signal" letting me know that the "apocolypse" was coming. I'd get this faint, vague sensation in my lower back which translated into...."get moving, and find a magazine and restroom..you have less than 1 minute." then the sharp, crampy pain came and went. then it was time to "go.


Where was the abdominal pain [could you localise it with a finger; generally lower abdomen; around belly button; above belly button, other]: the crampy pain before BM was in lower abdomen.



Abdominal masses [e.g. mass felt in lower left/right abdomen]: no masses felt



Blood in stool [e.g. blood as if cut yourself; tissue type blood; mixed in with stool; one day blood the other day not, clots, other]: Blood was mostly clotted together, mucousy looking sometimes, thick strands, and not free flowing as if fresh from a cut. generally around the outside of the waste matter and came at the end of the BM, on top of the pile. (you asked for the graphic-ness...)



Stool consistency [people say diarrhoea but one definition may differ from anothers definition- literally water like, porridge like, constipation and diarrhoea mixed, constipation, other]- never constipation, diarreah was liquidy, splurt-y (splurted out) sometimes like porridge, thicker than water though never ever solid in cohesive. also, i could the food waste was moslty whole like it was never digested. I could tell what my last menu had been. Admittingly, as uncomfortable as it was, i'm always so fascinated by medical things...i would take a Q-tip (cotton swab) and like a forensic detective, inspect what was in the bowl, poke at the food chunks...

How many times during the day would you go to the toilet: 5-8

Mucus: surrounding BM and in bowl

Fever: nightly for 3 monthis prior to dx (99.0 -103.0 F)

Other pains [back, legs, ribs]: yes, with fever had flu-like symptoms..achy joints, elbows, knees, shoulders and chills

Blood tests [more specifically, was there a change in your ESR or CRP]: Don't know abt change in sed rate, though i was severly anemic from long-term, chronic blood loss. Looking at some notes I took then, at the lowest, my Hemoglobin was 6.9 and Hematocrit was 23! about a month after I began meds, Hemogl. was up to 7.6 and Hematocrit was up to 25.5. Went up from there bec. i was finally dogesting food and taking heavy iron supplements.

Other abnormal blood results: gotta get back to you abt that

Extraintestinal manifestations [eye problems, skin tags, fissures, fistulas, rashes, mouth ulcers]: Developed Erethenum Nodosum when tapering off Prednisone.

Weight loss [how much and over what duration of time; was you eating the same amount or even eating less or more]: eating same amount, even more than usual, 25 lbs loss over last 2-3 months b4 being dx



Anything else that might be an interesting point to note about your presentation: about MEDS:was on prednisone for abt 8-9 weeks, then when tapering off, developed Erethenum Nodosum (rash on front of lowere legs - big red welts, hot to the touch, pulsating and painful). Doc RX'd 6MP (Mercaptopurine) bec works similar to Cortisone but without it's side effects. Liver needs monitoring with it so had weekly blood tests. on 6MP for about 7 months. on 12 Asacol a day thorugh that all. Now, only on 8 Asacol a day and never felt better.
PRESENTATION: After first Colonoscopy and sigmoidoscopy, GI was mystified why colon was affected but rectum was clear. Ulcerated colon he said, begins at the rectum. A few weeks later, another colonoscopy revealed that colon was then infected.

Thank G-d, feel gr8 now and have no symptoms, except a slight gassy, bloated feeling if i forget to take meds that day.

thanks for asking!


Dx: Dec. 2006 with UC
F, 23, NYC
Thank G-d - Prednisone then 6MP, Rowasa and Asacol brought remission
Now Asacol 4tabs 2x a day.
Muiltivitamin, Iron and Folic Acid supplements

Post Edited (:)) : 3/23/2008 12:17:09 AM (GMT-6)


Jsanders505
Regular Member


Date Joined Mar 2008
Total Posts : 94
   Posted 3/21/2008 4:37 PM (GMT -6)   
Oh ok, I know they used to say it was psychological but I didn't have any of these symptoms until I was going to the bathroom 35 times a day with blood. I think anyone with this awful disease would be depressed.
-Stress
-A mountain out of a molehill
-Depression
-Hypochondriac
-Heart sink patient

braillegirl
Regular Member


Date Joined Jan 2008
Total Posts : 66
   Posted 3/21/2008 8:14 PM (GMT -6)   

First presentation symptoms blood and mucus

 

Duration of them first symptoms: went to GP...thought it was hemmies. sent me to GI, GI wanted to do sigmoidscope. did all the icky prep and went to hospital. GI did sigmoid, no problem no hurt. he wanted expert to look at me...had to wait an hour, (now I had driven myself and was all alone)

expert comes in and wants to do colonoscopy...but I had no way to get home....He did it without being sedated...talk about HURT. I was screaming with pain...poor nurses hand was probably bruised. I had dr and 3 nurses in room with me. I was in some serious pain. Said UC and that was it. He was a real jerk...I was so full of air I literaly walked out of hospital bent over, I could not stand up straight. GI prescribed sulfa? and was on that for at least 5 years.

Went for colonoscopy with new GI 5 years later. UC throughout. Had major flare. Blood and mucus and going a lot but don't remember much more...just that I went through all the meds, asacal, canasa, some other enamas, prednisone before it settled down. 

Shift to present, had flare going on for a year but got to bad went to see GI...going 20+ times...only mucus and blood, constipation, no pain...just uncomfortable with being filled up with poo.

Had colonoscopy. UC in rectum and a little in sigmoid colon. No where else...MAJOR FLARE. Was so inflamed no poo would come out. Put on cortifoam...did nothing. put on Prednisone short taper. not enough. Put back on Pred and continuing for at least another month. Much better but still have some blood and mucus. poo is skinny like snakes. I am praying the prednisone will do the job. I think I should be a lot better than I am but we will see.

 

Abdominal pain [nature of the pain- sharp, dull, burning, achy, general upset, other- was there pain on touching your abdomen; associated with eating]:  just uncomfortable...had a couple bad days of bad pain while going or trying to go poo.

 

Where was the abdominal pain [could you localise it with a finger; generally lower abdomen; around belly button; above belly button, other]: on left side

 

Abdominal masses [e.g. mass felt in lower left/right abdomen]: none that I know of

 

Blood in stool [e.g. blood as if cut yourself; tissue type blood; mixed in with stool; one day blood the other day not, clots, other]: blood mixed with stool all the time, tissue type blood, mucus and blood

 

Stool consistency [people say diarrhoea but one definition may differ from anothers definition- literally water like, porridge like, constipation and diarrhoea mixed, constipation, other]- constipation some diarrhoea. kinda porridge like but mostly constipation

 

How many times during the day would you go to the toilet: when flaring 20+ but only mucus and blood.

 

Mucus: yes

 

Fever: sometimes..low grade but only once or twice this last flare.

 

Other pains [back, legs, ribs]: Hips, back

 

Blood tests [more specifically, was there a change in your ESR or CRP]: None taken...don't know why I intend to ask GI when I see him in 3 weeks.

 

Other abnormal blood results:

 

Extraintestinal manifestations [eye problems, skin tags, fissures, fistulas, rashes, mouth ulcers]: mouth ulcers, butt ulcers

 

Weight loss [how much and over what duration of time; was you eating the same amount or even eating less or more]: None

 

Anything else that might be an interesting point to note about your presentation: depression, anxiety, always looking for bathroom, stress


 DX: 1993: sulfasalazine; 1998: Pancolitis UC. asacal 2 2X daily, cortifoam,; 2003: Protitis UC severe flare. asaca 2 2X daily, canasa, cortifoam, cortenema
2008: Proctosigmoiditis severe flare. asacal 3 2X daily, canasa/discontinued while on pred, cortifoam/discontinued, Prednisone 40 mg to be tapered each week
Back on Prednisone 30 mg for 2 weeks then taper to 20 mg then we'll see. Back on Canasa at night.


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5187
   Posted 3/21/2008 9:12 PM (GMT -6)   
Hello! Symptoms that drove me to the gastroenterologist's office were random spasticity with expulsion of bloody mucus, tenesmus, 6-8 loose bms daily, weight loss, and inability to sit at table for a meal without having to run to the toilet after swallowing a few bites of food. When I felt abdominal pain it was located in the upper left quadrant. The upper & lower barium series failed to show any problem, but colonoscopy revealed severe ulceration thru sigmoid flexure. Sorry, have no idea what my ESR was at diagnosis. I do recall, though, that the gastro said after 1st colonoscopy that my inflamed tissue looked "like raw hamburger". It was very friable & pus was visible, too. It took 3 months to bring my 1st flare to remission with hydrocortisone enemas. I had been ailing for over a year with spells of D prior to diagnosis, but usually had a normal appetite & pain-free stomach, rarely any nausea. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remission; daily multivitamin + 1 tablet glucosamine500/chondroitin400 for joints)

tooth fairy
Regular Member


Date Joined Jan 2008
Total Posts : 98
   Posted 3/21/2008 9:27 PM (GMT -6)   
2nd pregnancy, around 12th week noticed mucous on toilet tissue after BM. mucous was not always present, but didn't seem to get worse over a week or two. absolutely no other symptoms; no pain, no stool changes. the on-call OB-GYN says "you are stressed." I don't feel stressed in any way and have always managed stress well, but as mucous is only symptom, carry on as usual.
week 20 there is still mucous, and now blood on the tissue. still no pain or stool changes. my regular OB says "hemmrhoids," gives Rx to treat. No visible evidence of hemm's, no pain-and the cream doesn't seem to help, but mucous/blood is not interrupting my day, so carry on as usual.
week 33 sudden, horrible diarrhea. at least 1 toilet trip per hour, often more. no pain. some blood, but mostly just very watery diarrhea, explosive, with minimal warning of onset. wait 4 days thinking is food poisoning or other bug, but when not improving. call OB. OB says "suspect c-diff infection-you were out of the country and have been on abx's." treats with abx. no changes.
day 7 of constant D-waking at night to go and going about 40 times per day-OB refers me to GI. GI switches antibiotic. I go out of town (my whole family was vacationing, and while I didn't want to go, I couldn't imagine being alone at home in my current state).
Vacation week is horrible, no changes whatsoever, despite 2nd antibiotic, an antispasmodic (this did slow me down to about 1 trip per hour or two). have now lost 8 pounds.
day 21 of constant D, GI opts for colonoscopy, gives a very light prep.
Prep induces labor, son is born healthy, just a little small.
symptoms continue. colonoscopy 2 days after delivery confirms UC. steroids and asacol and symptoms immediately begin to abate.
Erica, 31
Pancolitis, diagnosed July 2006, at age 29
Imuran, Asacol, Rowasa*(new!)
Experimenting with diet, live culture yogurt and probiotics


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 3/22/2008 11:47 PM (GMT -6)   
I was 8 months into a one-year episode of post-infectious reactive airway disease when I started having two or three stools a day. They were normal, just more frequent. This was in June. Things gradually got worse, until by August I was going four or five times a day and the stool was pudding consistency. Then I started to have blood and mucous. I went to my primary, who put me on a course of Cipro. When that didn't solve the problem, she referred me directly to a GI. I had a colonoscopy in November and was diagnosed with moderate to severe proctosigmoiditis. The only pain I had at that time was occasional cramping with stools.

Because only the distal colon is involved, I've never had liquid stools, even when I was going 20-25 times a day. I did get anemic, but that responded to a multivitamin with iron daily. I've also never had problems with severe weight loss.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


Asia
Regular Member


Date Joined Aug 2005
Total Posts : 188
   Posted 3/23/2008 5:54 AM (GMT -6)   
I'm 23 years old and was diagnosed at age 20. I had symptoms for 10 years before being diagnosed.

First presentation symptoms: I was 10 years old the first time I saw blood in the toilet. It started just in the stool. The doctor said there was nothing wrong and that I merely had an unhealthy diet. ... The next 10 years of my life were hell. Constant stomach pain. Back Pain. I was constantly on the toilet either passing bloody diarrhea, just blood or mucous, or simply having a "wave" of nothing.

Duration of them first symptoms: 10 year perma-flare. I was either very sick or REALLY sick. When I was 18 I went to the ER because I was having rectal bleeding and BMs that were nothing but tons of blood, was sent home and told I had the flu.

Abdominal pain- All of the above. You name it, I had it. Sharp, dull, achy, burning, melting. I found that the pain would start very high (below breast line) and over the next few days move around to different areas. I'm sure this threw the doctors off a lot. It would generally settle on my left side or lower abdomen. Touching the area would hurt and send me to the washroom. Eating would also send me to the washroom, usually as I was eating. Pain was always there but would be much worse when I had to go and then subside.

Where was the abdominal pain-Mostly lower abdomen, but as I said above, the pain would travel--thinking back, possibly may have been gas?

Abdominal masses- None, I don't think.

Blood in stool- Because I was undiagnosed for so long I would have different stages of being sick. There was ALWAYS blood. But depending on how sick I was it could of been in the stool, in the water, combo of both, or ONLY blood. I always had a BM--usually first 8 BMs would have stool and then the rest of the day would be blood or mucous or both.

Stool consistency- Mostly always porridge like--like no where near solid, but not totally liquid. Even now, I rarely have a solid BM.


How many times during the day would you go to the toilet- 10-30+ times a day, depending on how sick I was. (Sorry, 10 year span.)

Mucus- In the bowl, in the BM.

Fever- None that I can remember.

Other pains [back, legs, ribs]: Lower back pain, spinal pain, leg pain.

Blood tests- From what I recall, I always had good iron. I got very very ill in 2004 and nearly died, since then my iron/hemoglobin/ect have been issues.

Other abnormal blood results- I'm not sure.

Extraintestinal manifestations- Fissure rarely, eczema on hands, I have had some mouth ulcers in the past. Eczema would be the one that never gets better.

Weight loss- In the past I've experienced weight loss. I would get so ill that I would stop eating pretty much entirely. The most extreme was 30lbs in less that 2 weeks.

Anything else that might be an interesting point to note about your presentation- WHY?? Why did it take so long to be diagnosed? I was always told it was "JUST IBS", then after having having a colonoscopy done in 2002 they said it was "JUST A POLYP" and that I would get better. It wasn't until 2005 that a colonoscopy finally proved that it wasn't "ALL IN MY HEAD". I had more than enough consistent and serious symptoms that some doctor should have realised sooner.

Also, fatigue is an issue. Seems like I'm never not tired.
Bathroom anxiety.
Since being diagnosed I've gotten it under decent control. It's amazing how much doctors want to help you when they actually KNOW what's wrong.
Diagnosed with UC in August 2005. 
Suffered for my whole life before being diagnosed. 
Told to "Eat more fibre." 
 
Currently on:

Salofalk 1500mg x 4/day
Entocort
6mg x 1/day
Entocort increased to:
9mg x 3/day as of 2.14.08


Med
New Member


Date Joined Mar 2008
Total Posts : 13
   Posted 3/23/2008 8:32 AM (GMT -6)   
Thanks for your responses guys, I didnt know I had anymore as I didnt get an email informing me, I just thought no one was interested;-). The variation is quite dramatic in presentation but either way it seems like there is a factor that can be pointed to that would need investigation such as blood, frequency of bowel movements, blood tests, pain and duration on symptoms. Your presentations of symptoms will certainly help people understand, I was looking all over for presentations as people would go straight to the treatment side of things and websites seem to give the same generic presentation. I can relate this to the patients that I see for sure but generally in the cases that I have seen on first presentation to GP or clinic I would always check the blood results and always noticed an inc in ESR and or CRP. From this side of things I was trying to make a associations of symtoms of blood results [CRP and ESR], history and examination wihout having to go through more invasive tests such as colonoscopy e.t.c.

I really dont know why you were not investigated earlier Asia, your symtoms are classic. I wrote this to find out about all presentations and it appears that docs are missing the blatantly obvious, sorry to hear that and hence why I am trying to understand.
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