IBD presentation

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Med
New Member


Date Joined Mar 2008
Total Posts : 13
   Posted 3/21/2008 11:16 AM (GMT -7)   
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.
________________________________________________________________
I would suggest you email with site admin (admin@healingwell.com) for permission to post this because it is a little close to: 5. No posts regarding research studies, surveys or clinical trials without obtaining prior approval.
Since you said this was for your education, and not for your own personal information.

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Post Edited By Moderator (MMMNAVY) : 3/22/2008 10:46:15 AM (GMT-6)


potatoqwn
Regular Member


Date Joined Jan 2006
Total Posts : 355
   Posted 3/21/2008 6:42 PM (GMT -7)   
I don't know if this helps, but here is how it all began with me.
After the birth of my first child at age 26, I began having blood in my stool.  Bright red.
Told OB/GYN who said it was due to hemmorhoids. 
Kept having blood and it increased.  Started being able to eat anything but never gained weight.  Started losing weight. 
Got pregnant with my second child three years later and began having bloody diarrhea.  Told new OB/GYN.  He told me to be happy that I wasn't constipated.  Told me I had hemmorhoids.  Neither doc ever checked me, by the way, for hemmies. 
Had bloody diarrhea and increasing pain in rectum during pregancy.  
After my son's birth, I began having severe pain in my rectum and lower abdomen.  I had bright red blood with every bowel movement.  The BM's mostly were watery type mixed with blood, pus and or mucus.  The entire toilet bowl was red and you could not really see the stool.  I lost all my pregnancy weight (24 pounds) in about a week. 
about seven months after the birth of my son, I lost another 20 pounds in about three more weeks.  I was already very thin to begin with and really didn't have any to lose.  I could not really eat much.  Any food or drink would cause me to go straight to the bathroom.  OB/GYN still told me I had hemmorhoids (and yet still no exam for them) and gave me a referral to a surgeon.  I was having about 20 - 30 BM's a day.  All were bloody with pus and/or mucus.  I had low grade fever, joint pain, eye pain and severe lower abdominal pain.  I had extreme rectal pain.  The pain in my abdomen was low and on the right side.  Sometimes it radiated down my right leg. 
Went to that surgeon who told me that I didn't have hemmies.  He said I had the longest and widest anal fissure he had ever seen.  Wanted to operate.  I hesitated (thank God as that would only have made things worse) and decided to wait.  Meanwhile, the weight loss and blood loss were making me very weak.  Finally, I fainted and my husband took me to the ER.  It was there that the doctor suspected either E.Coli or Crohn's.  This was the first real exam I had gotten related to my issues.  I had pain when he pressed pretty much anywhere on my abdomen.  They took a stool sample and it was just blood and pus.  I had a fever (101 or so) and was anemic.  I was sent to a GI who finally diagnosed Crohn's after doing the colonoscopy.  
It took nearly four years for the diagnosis after initially seeing the blood in my stool.  I realize now though that I probably had it much earlier (when I was a child) when I used to get very bad appendicitis-like pain at times, accompanied with diarrhea. For those times, our general doctor would always kind of roll his eyes and tell my mother that I just had a little stomach bug.  We didn't have much money and I felt bad using it to go to the doctor, so I just pretty much tolerated it through the years and didn't go to the doctor because it was "just that stomach bug" again. 
I hope this information helps.  Sorry it was so long.    

Med
New Member


Date Joined Mar 2008
Total Posts : 13
   Posted 3/22/2008 3:16 AM (GMT -7)   
loobylou said...
I presented with IBS symptoms over a decade ago... being female a slight irregularity in my hb was put down to menses.....the only other thing that showed up consistantly was extremely high platelet counts, why this was not significant I don,t know, maybe you could shed some light on that for me?
Loobylou
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.

Med
New Member


Date Joined Mar 2008
Total Posts : 13
   Posted 3/22/2008 3:40 AM (GMT -7)   
potatoqwn said...
I don't know if this helps, but here is how it all began with me.
After the birth of my first child at age 26, I began having blood in my stool.  Bright red.
Told OB/GYN who said it was due to hemmorhoids. 
Kept having blood and it increased.  Started being able to eat anything but never gained weight.  Started losing weight. 
Got pregnant with my second child three years later and began having bloody diarrhea.  Told new OB/GYN.  He told me to be happy that I wasn't constipated.  Told me I had hemmorhoids.  Neither doc ever checked me, by the way, for hemmies. 
Had bloody diarrhea and increasing pain in rectum during pregancy.  
After my son's birth, I began having severe pain in my rectum and lower abdomen.  I had bright red blood with every bowel movement.  The BM's mostly were watery type mixed with blood, pus and or mucus.  The entire toilet bowl was red and you could not really see the stool.  I lost all my pregnancy weight (24 pounds) in about a week. 
about seven months after the birth of my son, I lost another 20 pounds in about three more weeks.  I was already very thin to begin with and really didn't have any to lose.  I could not really eat much.  Any food or drink would cause me to go straight to the bathroom.  OB/GYN still told me I had hemmorhoids (and yet still no exam for them) and gave me a referral to a surgeon.  I was having about 20 - 30 BM's a day.  All were bloody with pus and/or mucus.  I had low grade fever, joint pain, eye pain and severe lower abdominal pain.  I had extreme rectal pain.  The pain in my abdomen was low and on the right side.  Sometimes it radiated down my right leg. 
Went to that surgeon who told me that I didn't have hemmies.  He said I had the longest and widest anal fissure he had ever seen.  Wanted to operate.  I hesitated (thank God as that would only have made things worse) and decided to wait.  Meanwhile, the weight loss and blood loss were making me very weak.  Finally, I fainted and my husband took me to the ER.  It was there that the doctor suspected either E.Coli or Crohn's.  This was the first real exam I had gotten related to my issues.  I had pain when he pressed pretty much anywhere on my abdomen.  They took a stool sample and it was just blood and pus.  I had a fever (101 or so) and was anemic.  I was sent to a GI who finally diagnosed Crohn's after doing the colonoscopy.  
It took nearly four years for the diagnosis after initially seeing the blood in my stool.  I realize now though that I probably had it much earlier (when I was a child) when I used to get very bad appendicitis-like pain at times, accompanied with diarrhea. For those times, our general doctor would always kind of roll his eyes and tell my mother that I just had a little stomach bug.  We didn't have much money and I felt bad using it to go to the doctor, so I just pretty much tolerated it through the years and didn't go to the doctor because it was "just that stomach bug" again. 
I hope this information helps.  Sorry it was so long.    
 
Thanks for your response. Yours and a lot of the presentations that I have read on this forum shout out 'red flags' to me. In them four years from intial presentation to actually getting a diagnosis did you ever get a normal bowel movement. Was your bowel movement a day more than normal for all that period as well e.g. more than 6 times a day for them 4 yrs. In the early days when you got your symptoms did you get pain on touching your abdomen. Did you ever feel 'normal' in them 4 yrs as you did do before these symptoms. Did you have blood in your stools everyday in them 4 yrs.
Your response was great, it wasnt too long at all. I think I should be apologising for long questionnaires and questions;-). I just feel from hearing your repsonses from doctor consultations and my experience from being in clinics, wards and GPs will help in the future and reduce anxiety a paient may have. The questions that I asked in my original post were the bare minimum I could ask to ascertain what was going on. A lot of docs say come back in 2 weeks from initial presentation and see how things go thinking along the infectious route and hence I was asking my questions to see if anyone does present 2 weeks later with little problems.
Thanks

Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 3/22/2008 5:35 AM (GMT -7)   
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!
Co-moderator - IBS Forum


Med
New Member


Date Joined Mar 2008
Total Posts : 13
   Posted 3/22/2008 5:55 AM (GMT -7)   
Sarita said...
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!

 
Hey Sarita, thanks for the shout out;-). See what I mean about presentations, they can so easily be mistaken but yours with a travel history should that have been for your elective or whatever has a direction of cause-> foreign travel. How long did your symptoms last. Did they ever get better. The GI consultant that I was with on my rotation drew some really simple graphs explaining how a presenation of IBD, IBS and infection present as a general rule of thumb. Did your stool samples come back negative. Thats another thing that pisses me off, stool samples, blood samples, and tests like theses are so variable. I have seen patients come in and provided 4 stool samples on 4 occasions and came back negative and then they decide to do a 'hot sample' and there it is, infective. Were you eosinophils raised with your bloods. Also, since youre the IBS moderator, can a patient have IBS and have periods of normal stool formation or does it have to be diarrhoea, constipation or diarrhoa and constipation all the time? Did you have any post infective IBS symptoms or did you recover and that was that, no niggles or upsets?

Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 3/22/2008 6:20 AM (GMT -7)   
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.
Co-moderator - IBS Forum


jdiane
Veteran Member


Date Joined Jan 2003
Total Posts : 1131
   Posted 3/22/2008 6:55 AM (GMT -7)   
I presented with LRQ pain, I described it as pain like runners cramp and at times stabbing pain, like a dull knife that had been placed in a fire, then covered in sand and shoved repeatedly into my side. I also had an elevated WBC.
 
 


Illini
Regular Member


Date Joined Dec 2007
Total Posts : 298
   Posted 3/22/2008 8:36 AM (GMT -7)   
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.
 


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 3/22/2008 8:49 AM (GMT -7)   
And then there are those few of us with CD isolated to the rectum (so far). First time I new anything was a peri-rectal abcess and perineal fistula. Just had a repeat in the same spot! So now I have two setons. I was mis-diagnosed as having 2 badly infected Bartholin gland cysts. Then I saw a colo-rectal surgeon and GI who both diagnosed CD.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 3/22/2008 9:08 AM (GMT -7)   
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.
Crohn's Co-moderator

We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants)
Praise in public, chew in private.
Make sure your suffering has meaning....
____________________________________
All suggestions/options/opinions are caveated with please consult with your local health care provider...

Post Edited (MMMNAVY) : 3/22/2008 10:56:36 AM (GMT-6)


potatoqwn
Regular Member


Date Joined Jan 2006
Total Posts : 355
   Posted 3/22/2008 11:01 AM (GMT -7)   
Hi again Med,
In response to your questions, I bled each and every day for nearly 17 years with each and every bowel movement. I am now on Humira (two years now) and have no blood. The BM's alternated between watery and mushy. This is pretty disgusting, but they would seem to come out soft/normal and then sort of disolve into complete mush. Lots of times I would rush to the bathroom only to pass blood and pus/mucus. I would estimate that I had to use the bathroom at least 8 to 30 times a day in all those years. Every once in a while I would have a good day and go only about 5 times a day. I would say that I never had normal bowel movements in all that time until now. I sometimes would feel a bit better, but never quite normal. After a while your "normal" is simply just not feeling "horrible", you know?
I did press on my abdomen and it always hurt. One interesting thing was that I had most of the pain in my lower right side, but when I pressed there it would hurt on the left side too. They called it referred pain. By the way, I have Crohn's in my large intestine only so my symptoms may be different because of that. I also have always gotten many mouth sores except for now while on Humira. If you have any more questions, please ask.

Crohn'snme
Veteran Member


Date Joined Feb 2007
Total Posts : 734
   Posted 3/22/2008 4:54 PM (GMT -7)   
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

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 3/22/2008 8:59 PM (GMT -7)   

Med, thanks for asking. Please be aware that NOT all Crohn's patients have diarrhea. My daughter has never had diarrhea. The medical textbooks are remiss in not making it clear that diarrhea does not need to be present.


Momikins
Regular Member


Date Joined Oct 2007
Total Posts : 77
   Posted 3/22/2008 10:29 PM (GMT -7)   
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.

Momikins
Regular Member


Date Joined Oct 2007
Total Posts : 77
   Posted 3/22/2008 10:45 PM (GMT -7)   
O.K. so I guess I really didn't answer all your questions. Here is more detail:
Abdominal Pain: varies from generalized neasea to dull to sharp pain in right quadrant or around belly button. Pressing on my abdomen causes pressure which is uncomfortable, but not really painful.
Abdominal Mass: none
Stool Consistency: varies in consistency, color, and amount. I use to go 3-4 days between BM's. Now, I'm every day and I have on average two before 8am. On good days I don't have any more BM's on bad days I'll have a few more throughout the day.
Mucus: Sometimes
Fever: Sometimes, usually low grade
Other: Daily lower back and foot pain. Sometimes I have pain that radiates down my thighs. It feels like I'm sore from a workout, but I didn't work out.
My eyes burn a lot, I have skin tags, and I have a lot of fatigue.
I have lost some weight (size 18 to size 12), but I attribute that to the drug Metformin which I took for several years to control my Poly Cystic Ovarian Syndrome.

Med
New Member


Date Joined Mar 2008
Total Posts : 13
   Posted 3/23/2008 5:53 AM (GMT -7)   
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.

Med
New Member


Date Joined Mar 2008
Total Posts : 13
   Posted 3/23/2008 5:58 AM (GMT -7)   
Momikins said...
O.K. so I guess I really didn't answer all your questions. Here is more detail:
Abdominal Pain: varies from generalized neasea to dull to sharp pain in right quadrant or around belly button. Pressing on my abdomen causes pressure which is uncomfortable, but not really painful.
Abdominal Mass: none
Stool Consistency: varies in consistency, color, and amount. I use to go 3-4 days between BM's. Now, I'm every day and I have on average two before 8am. On good days I don't have any more BM's on bad days I'll have a few more throughout the day.
Mucus: Sometimes
Fever: Sometimes, usually low grade
Other: Daily lower back and foot pain. Sometimes I have pain that radiates down my thighs. It feels like I'm sore from a workout, but I didn't work out.
My eyes burn a lot, I have skin tags, and I have a lot of fatigue.
I have lost some weight (size 18 to size 12), but I attribute that to the drug Metformin which I took for several years to control my Poly Cystic Ovarian Syndrome.
Hi Momikins, are these answers you given above when you are on medication. Also, if you did lets say miss medication do your symptoms flare up like they did on your first presentation or could you confidently come of meds and have what you have described above?

Med
New Member


Date Joined Mar 2008
Total Posts : 13
   Posted 3/23/2008 6:07 AM (GMT -7)   
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.

Med
New Member


Date Joined Mar 2008
Total Posts : 13
   Posted 3/23/2008 6:21 AM (GMT -7)   
Sarita said...
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.

Hi Sarita, thanks for your response. I have another question for you. Is it unusual for a patient to have symtoms of Crohns or UC and go into a remission and have almost perfect 'normality' they had before without even being diagnosed. By this I mean that they had symptoms for lets say 7 days on and off with varying degrees of severity and then their bowel movement decreased in frequency to 2 from lets say 7 and bowels were partially normal from being diarrhoea and sometime blood . Then when they get their appointment with the doc their symtoms they had stopped and they felt better and hence no further investigations. I have been told that you can have people walking round and dont even know they have Crohns or UC as the symptoms are not alerting. I was even told that if a patient did have Crohns but no symtoms [this is before they were put on any meds] that they would not put them on meds and sooner start an elemental diet? From what I am hearing from all the presentations that I have read and seen is that it is really unusual for a case of Crohns or UC go unmissed and that remission is unusual before scoping and meds? [unless the doc couldnt see the roaring obvious red flags!!!!!].

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4101
   Posted 3/23/2008 7:43 AM (GMT -7)   
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
49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 8 250mg pills per day, Cipro 1 week/month, Metamucil, probiotics


Med
New Member


Date Joined Mar 2008
Total Posts : 13
   Posted 3/23/2008 8:17 AM (GMT -7)   
gumby44 said...
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 there, thanks for your reply. I just wanted to understand further on what you said. You said that:-
 
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.
 
So at this point you had a diagnosis and would have been started on meds? So after this your symptoms could be linked to Crohns should that have been infective [Salmonella] or not. Did you ever feel 'normal' as you did do before after this episode [meds or not?]. How many weeks was weeks?
 
But before this:-
 
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.
 
So youre saying that in the Oct. of 2006 that you would associate these symptoms to Crohns even though all tests were negative [hence the point made about the 8 months of remission [you see this as a remission?]. Did the doctors ever give a cuase for the underlying cause of your anemia in the Oct. of 2006 or did they just let it go as all your tests were negative?
 
Did you have any blood results [ESR, CRP] when you had your 2006 episode and for that of your 2007 one?
 
You also say that:-
 
However, I have had constant abdominal pain, gas bloating and occasional diarrhea and constipation since then.
 
Is that whilst you were on meds. When you say abdo pain, is that constant and in one place or variable throughout the day or everyday since.
 

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/23/2008 9:28 AM (GMT -7)   
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.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4101
   Posted 3/23/2008 11:33 AM (GMT -7)   
Hi Med,
Thanks for your interest. I'll try to answer your questions, and in exchange, if you have any brilliant ideas for me, I'd love your feedback!
In 2006, they saw no reason for the anemia. The primary doc followed my bloodwork, and it returned to completely normal. I attribute the 2006 hospitalization to Crohn's because my hematocrit was at 8, and ferritin was very low, and there must have been somewhere that I was bleeding..I assume now that it was in my small intestine, which is hard to find without the camera swallow test. (I didn't have that test until 2007) At that time my sed rate and other bloodwork was normal. I did not have an infection prior to 2006...I was under stress because my mom was just dx. with cancer, but I had no precipitating illness.
In 2007, with the throat infection, Strep and mono test were normal, but I was once again anemic, with high WBC and an elevated Sed rate. I don't know if they took CRP levels. They still put me on three different rounds of antibiotics (Z-pac, Levaquin, and Augmentin) due to the high fever. In retrospect that was a big mistake, because I think the throat infection was actually Crohn's ulcers, and the antibiotics may have caused the ulcer in my small intestine and inflammation in my ileum. (my best guess) After I completed all of the tests in the fall of 2007, I went on Pentasa and two rounds of Prednisone, each for about two week tapers. I felt perfect for about three weeks in December, (remission) and then all hell broke loose. I was having severe cramping a diarrhea, even if I only had a sip of water. My doc thought it was Crohn's so I started on 40 mg of Prednisone, which made everything worse. In January, I went to U of Michigan for a second opinion. That doc tested for C-diff, but not other stool tests, and wanted me to start 6-MP. My GI at home finally tested for Salmonella, and it was positive.
I am now taking Pentasa and Cipro 1 week a month. I do have intermittent pain in my ileum, but I also get cramping, bloating and pain that seems to move around. All of my blood work now is completely normal, even the stool culture is normal. I have some alternating C and D, but I often have normal stools, but still, I seem to have pain somewhere daily, and I eat the blandest diet in the world! I'm probably getting slowly better, but it is ridiculously slow progress. I don't know if my doc is right about the "post infectious syndrome, " vs. active Crohn's disease. I guess only time will tell, but we are trying this one week of Cipro per month routine for a few months, along with Probiotics to see what happens. BTW, I 'm crazy about my doc....he did miss the Salmonella dx. for over a month, but it's pretty understandable. Thanks for reading my tale of woe. I've never been sick before all of this Crohn's stuff, and it has been quite a roller coaster ride!
49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 8 250mg pills per day, Cipro 1 week/month, Metamucil, probiotics


potatoqwn
Regular Member


Date Joined Jan 2006
Total Posts : 355
   Posted 3/23/2008 11:49 AM (GMT -7)   
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.
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