IBD presentation

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.

Without performing a colonoscopy

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

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!

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

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.

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.