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]:

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.

High levels of platelets in the blood is called "thrombocytosis". The reason why your high platelets could have been overlooked was that high levels do not always mean that there is a clinical problem. However, thats why the history and examination is important together with the high platetlets as it paints a different picture if the former two point at suspicious findings. The reference range that you get for platelets [and other indicies] is calculated by looking at a population group and working out an average, ok its more complex than that but thats the general nature of it. So that doesnt mean a high level in your blood is significant for you as that may be 'normal' for you. I have seen GPs discard high blood/electrolyte/liver function test results e.t.c after reffering back to the computer and checking what has been normal for them over the years. Its not wise to look at one of the results and make a jugement on that alone, history and examination are important.

I think that in inflammatory conditions platelets can increase quite dramtically as platelet production is increased in acute phase reactions [inflammation] so thats where that might come into play. But then again platelets can increase due to surgery, iron deficiency, or in a condition where the bone marrow kicks out loads of platetlets for no reason so there are many reasons BUT IMPORTANT IS HISTORY, EXAMINATION AND BLOOD FINDINGS TOGETHER FOR DIAGNOSIS.

Hey Med, welcome to the boards! I am also a medical student, in the U.S., so I thought I'd send a shout-out! I think it's great you're perusing some different avenues for finding out information about IBD - so often we depend on our textbooks to learn, we forget that we are doing this for our patients, and need to hear them out!

I thought you might be interested in hearing about a weird case (mine, ha). I started having chronic diarrhea a few years ago, which was so extreme I was sure I had some kind of inflammatory bowel disease. I was having 15-20 watery BMs per day, lost about 40 pounds, had recurrent fevers, fecal occult blood and leukocytes...this all started after I supposedly cleared a parasitic infection I picked up in Africa (giardia and amoebiasis). My scopes, however (including biopsies, and a camera endoscopy) were entirely negative, as was a CT. So I've never actually gotten a diagnosis. I think it's interesting that such severe symptoms can occur in the absence of any inflammation, while other people have extensive inflammation but mild symptoms.

Best of luck on your project!

The thing about those stool tests for O&Ps is exactly what you said - it's so hit-or-miss. One hot sample is confirmatory, but 50 negative samples doesn't mean anything, since the ova are shed intermittently.

All of my docs think my travel history is the most significant aspect of my gut problems, and I've been advised on several occasions to see a tropical medicine specialist, but I think even they would have a difficult time with my inconsistent test results. My white cell differentials have always been normal. I've had stool samples that are positive for leukocytes and blood, but then others that were negative. The interesting thing is that I do notice improvement with metronidazole treatment. If I'm treated for 10 days (this has been tried on at least three separate occasions) I usually experience some months of "remission" in which my diarrhea slows down considerably.

IBS is tricky since we don't even really know what it is exactly - although the serotonin receptors are becoming a hot topic. Plenty of people alternate between having diarrhea and constipation, and most of them experience some pain (sometimes a considerable amount), and most of them have a lot of gas and bloating. The more severe cases are very troubling (you should check out the IBS board for anecdotal evidence!). I am not sure what the literature says about intermittency, but know that the symptoms can worsen significantly during periods of stress. My own symptoms have never really pointed to an IBS diagnosis, but some doctors use that term as a catch-all for any bowel disorder they can't diagnose. I never experience excessive gas or bloating, and never experience constipation.

I do think the possibility remains that this is a post-infectious process. Unfortunately, I also have autoimmune hyperthyroidism, which came about long after the diarrhea started. That was one thing they checked repeatedly, thinking this diarrhea and weight loss was thyroid-related; but all the tests were normal. Until one day, bam, I had an undetectable TSH and elevated radioactive iodine uptake. That has been controlled with propylthiouracil for a year, but part of me still thinks there's some relationship. Now I have kidney issues (persistent proteinuria). It's like the whole picture just gets weirder and weirder. Very complex indeed.

First presentation symptoms: High fever (102+) with chills and URQ abdominal pain ONLY occurred pre-menstrually. Massive liver enlargement (liver edge past pelvic bone) with zone 3 hepatic sinusoidal dilatation.

Duration of them first symptoms : Fever/pain episodes in end of May '07 and end of June '07, ER visits both times, hospitalized in July '07 for liver enlargement. Spontaneous remission until fever episodes in November and December '07. Diagnosed in January '08. Started polymeric enteral nutrition February '08.

Abdominal pain: Sharp.

Where was the abdominal pain: generally around or above the belly button only on the right side.

Abdominal masses : None.

Blood in stool: small amounts of bright red blood due to internal hemorrhoids.

Stool consistency: Normal.

How many times during the day would you go to the toilet: 1

Mucus: None

Fever: Only pre-menstrually.

Other pains : Lower back.

Blood tests : In May/June my ESR was about 70 and CRP was 37. By November ESR decreased to 27. Then in December was ill again, CRP was 19 and ESR 58. Now, after going on EN for 4 weeks, my CRP is 0.6 and ESR is 21.

Other abnormal blood results: Elevated liver enzymes in May/June, ALP was 2x normal, GGT was 3x normal. Decreased immediately after stopping use of oral contraceptives and did NOT increase again in December. Therefore it seems that my liver problems were probably due at least in part to the OC's. After diagnosis, Serology 7 test gave high titers for ASCA and OmpC and extremely high for CBir-1.

Extraintestinal manifestations: None

Weight loss: Only DURING/AFTER hospitalization and diagnosis; lost approx. 12 lbs. currently weigh 94 lbs.

Anything else that might be an interesting point to note about your presentation: In May '07 appendicitis was suspected, but I also had a ruptured ovarian cyst, so I was diagnosed in the ER with PID and treated with antibiotics. In June '07 the liver enlargement was noted and Budd-Chiari syndrome was suspected (also Wilson's disease, NASH, Glycogen storage disorder, IVC thrombosis, etc.) but I was discharged without a diagnosis after MRI, CT, Doppler ultrasound, chest x-ray, SBFT, liver biopsy, venocavogram, full clotting panel, etc. All of my symptoms were guessed to be from OC's. Then in Nov/Dec I was ill again. Doctors suspected Fitz-Hugh-Curtis syndrome, Crohn's, or gallbladder disease. Had a HIDA scan, colonoscopy, and CT enterograph, and was diagnosed with Crohn's of the small bowel. It is isolated to the terminal ileum.

First of all good luck, because it is a highly variant disease. I doubled my body weight with crohns, just an unusual crohnie. Probably when I started getting sick I was laid up in the hospital with severe ortho injuries. I went from running marathons to being flat on my back for almost a year. My main presentation is bloody stool (finally got to the point I was filling the toilet bowl with blood), gnawing abdominal pain, constant low-grade fever for more then 2 years, going 20-35 times a day. I was exhausted, but just put that down to stress. I was gaining weight, so I can understand there was a dx delay. I had one failed colonoscopy, a ct scan that showed nothing and what actually got me dx was a SBFT (then did a secondary colonscopy with biopsies), but what a cheap easy test to do. Granted not everyone shows up on a small bowel follow thru, but I did. I had several areas where the bowel was less then the diameter of a pencil, and a couple fistulas to boot.

Symptoms carried on for years, even after treatment it took about two and half years to find something that worked for me. Tried oral meds, could not keep them down. Tried remicade, got the lupus like symptoms. That was horrible. It is bad when your mother’s oncologist (she was dx with stage 4 ovarian cancer within six months of me being dx with crohns) says you are worse then how she is doing with chemo, because I was throwing up so much more then she was. I gained weight because I was trying to compensate for the energy loss, and high fat foods (like potato soup/creamy peanut butter) slow stomach motility. I am not in full remission yet, but with mtx I am going about 10-15 times a day and only vomiting a couple times a week. This is the most improvement I have seen so far…

As far as Stool consistency it has been all of the above at different times.

Usually now about 10-12, but there have been days that it was every half hour.
Mucus looks like poop snot.

Ran around 100-degree fever for 2 years.

Especially with the remicade lupus like syndrome, I could only walk short distances, and exercise was out of the question. (As a marathoner, that was very hard to swallow) I was in so much pain that it hurt to be hugged. It still does.

Both my ESR and CRP are very high. To quote my doctors: "This is a very non-specific test."
I had bad sinus infections, and coming from the allergy capital of the States, that is unusual for me.

It is hard to describe all the extra intestinal manifestations, because it is like the frog in slowly boiling water. (That story about if you put a frog in boiling water it will jump right out, but if you put it in cold water and slowly bring it to a boil, the frog will boil to death.) Things happen subtle, you just feel like crap. Even as someone with multiple BS's and a Masters before I got sick, I had a hard time articulating what my symptoms presented as. Partly because I just flat out did not want to be unhealthy.

I actually gained weight, but I am an unusual case. Probably because the hard core military life that I lead, before I got sick.

I lucked out that I had a job that required proof of physical and mental fitness, so that was a good defense with the psychological reasons, but there was still a dx delay because of that. In addition, it is hard not to be depressed when you are sick. Never mind the fact that being this sick can make major life stresses happen, like job loss and relationship issues.

Had symptoms of mucous, abdominal pain irregular stools for many years after childbearing, was blown off by Gynecologist that I needed more fiber in my diet???

14-20 Bowel movements a day, uncontrollable liquid stool, pain lower right abdomen, pain to touch, blood in stool, bright red. This was presented to a Physicians Assistant after a period of about 5 months of constant symptoms. Stool samples, blood work ordered, then colonoscopy. Surgeoun diagnosed Crohn's disease. Tried many drugs and finally Remicade about 6 months later and symptoms were still there but became controllable. Meaning I could leave the house again. C Diff twice, currently finished Flagyl with a an anal fissure now and constant abdominal pain and drainage, blood. Always low Red Blood Cell Counts, high liver counts. Please feel free to ask any questions that I haven't covered I will be happy to oblige. Also, Grandmother had Crohn's. Sibling with IBD. Imuran made my liver ill. Methotrexate gave me stomache pain, mouth sores, general fatigue. Steroids help, but too many side effects. 6 MP no help. Pentasa no help

Hi, the first time I presented with signs of Crohns I became violently ill after getting my children off to school one morning. I was fine one minute and taking my morning bath. But...as soon as I stood up to get out of the tub I got really neaseous. I layed in the fetal position on the floor in between throwing up and dry heaving into the toilet. Eventually, I was able to crawl to the bed. I kept passing out and finally at 2:30pm I called my husband at work to tell him that the children were due to come home and not only was I not going to be able to get up to answer the door, but I still hadn't been able to get dressed from my morning bath. He rushed home. Soon afterward, I was able with his aid to get dressed. My doctor sent me straingt over to a diagnostic imagining place that had me drink some white stuff. Then, they shot iodine in my veins and took pictures. They wouldn't let me leave the clinic until my doctor prescribed Asacol and they kept asking me if I had Jewish anscestors and if I'd ever heard of Crohn's disease. I said "no" and took the Asacol for two weeks. Then, I thought the medicine was hurting me so the doctor said I could stop taking it. I was scheduled for a colonoscopy which looked beautiful and a baffled doctor told me to keep taking my fiber supplement and contact him if I ever had anymore problems. about eitht years later, after a day of diahrea, I went to the emergency room with a lot or right quadrant pain that I could pin point with my finger. Again, iodine was shot into my veins and pictures were taken. This time I was told that I most definately had Crohn's disease in my colon and a long segment of my illeum. Later, blood tests were done to verify the diagonosis along with a small bowel follow through to see how much of the small bowel was affected. I was told my the doctor that ran the small bowel follow through that my colon and a long segment of the ileum was covered with small ulcers and that I was at the very early stages of the disease. I have pain in the right quadrant most every day to different degrees. I have two BM's each morning before I head off to work and then I'm good to go for the day. I'm on Pentasa and I take Fish oil. I hope all of this helps. I guess I should add that as a child I was always getting sick. I really never had much of an immune system. I had over 50 allergies and I got gamma shots on a regular basis. Strep and Pneumonia were the two things I almost always had. Well, I've rambled too much. I'll go. Good luck wih your research.

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 of 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 [that could change later] . 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. to see if a link could be made. OK, so if a person has symptoms that are quite obvious but little change in ESR, CRP then ok the prognostic indicator from symptoms shouts out. However, I havent seen it where people who on first presentation have normal ESR CRP and discrete almost IBS typish symtoms that could be Crohns or UC.

ADMIN

Hi, in response to the subnote on my post I just wanted to let you know that this isnt for a formal submission for research, surveys or clinical trials. It is for my own interest as I see a lot of patients with it and I just wanted to understand the condition better as books, internet and journals only take you so far. I have a friend that had symptoms that fit IBD and hence my interest as well as their presentation is not typical and they dont have any symptoms now. The quesions I am asking are related to my own interest as I think I learn a lot more by talking to people with their condition, my being a med student is just coincidental with my personal interest. Hope that is ok.

In reply to your question to Sarita, I thought I'd chime in with my story. I have had IBS since childhood, primarily constipated, but it was well managed with Metamucil and caused minimal disruptions in my life. In Oct. of 2006,(age 47) I had a racing heart and went to the ER, and found I was severely anemic, but no abdominal symptoms. I had a colonoscopy, endoscopy and barium small bowel follow through that were all negative. I had an iron infusion, returned to normal iron levels and was fine. Six months later I had diarrhea which lasted for two weeks and resolved on its own. In August 2007, I developed severe mouth ulcers and 103 fever which lasted for weeks. I found I was anemic again with blood in my stools, so colonoscopy, endoscopy, camera swallow were repeated. They found Crohn's in my ileum and an ulcer in my small intestine. In December of 2007, I had severe diarrhea and pain, which I thought was an exacerbation of Crohn's but it turned out I tested positive for Salmonella. I was treated with Cipro, which stopped the diarrhea, and subsequent stool tests were negative. However, I have had constant abdominal pain, gas bloating and occasional diarrhea and constipation since then. I have lost 25 pounds and I think I'm still losing weight, but all blood work, sed rate, etc is normal. My GI thinks I'm having post infectious IBS as a reason for my symptoms as more relevant than the Crohn's. I take Pentasa and Cipro one week a month to try to control the bacterial overgrowth along with probiotics, but I'm still fairly miserable daily.
- One interesting thing in answer to your above queries is that the initial testing when I was anemic showed no signs of disease, yet it had to be the Crohn's causing the initial anemia. And also, I did go around symptom free for close to eight months before a return of symptoms and the diagnosis...so I did go into remission on my own with no treatment...at least for awhile. How I miss those days! Hope this helps

Hi Med,

I was diagnosed in 1975. Mine started with abdominal cramps that would kinda come out of nowhere and would cause me to almost drop to my knees, then the diarrhea started about a week later. I saw my family doc and he at first thought it was a parasite or something. Gave me lomitil and Donnatal for pain and d. Don't remember what my blood tests showed, that was a long time ago. I was referred to a GI and it took about 3 weeks for her to diagnose me. In that way I think I was a lucky one who diagnosed so quickly. By the time they reached a diagnosis I couldn't even keep a sip of water in me because I would throw it up or have extremely bloody, mucousy diarhea. I also went from 118 lbs to 93 lbs in that time. That was the worst flare for me. I had another about 4 years later, it was bad but no where near as bad as the first flare. Both times I was treated with Prednisone and Azulfadine. I have the scarring type of Crohns. After the 2nd flare I enjoyed a 20 years remission where I hardly even thought about my Crohns. That ended abrubtly in 2002 with an emergency resection due to complete obstruction. Had another resection in 2005 due to a blockage at the reconnection site. My life now is complicated because of mechanical problems from the surgery more than from active Crohns. I only take Asacol now for my Crohns.

I forgot to say that my ESR was high and my CRP was elevated as well when first diagnosed and most of the time upon re-testing. But every once in a while the tests were in the normal range even with symptoms. And sometimes, even with daily bleeding, my hemoglobin was in the normal range too, which I found odd.