Marked lymphocytic follicular inflammation with mucosal erosion and blunting of villi

[sassymomma]

I began by researching my symptoms and narrowed them to IBD. Then after 2 wks solid of diareah every 15 - 30 min and trying desperatly to stay hydrated, came another colonoscopy - results from biopsy:

Duodenal = normal villi with lymphoid follicle, mucosal edema, and surface erosion.

Gastric antral biopsy= mild atrophy with mucosal edema and mild chronic inflammmation with hemmorrhage.

Terminal Ileum biopsies= Marked lymphocytic follicular inflammation with mucosal erosion and blunting of villi.

Random colon biopsy= chronic colitis with follicular inflammation and surface erosion with hemmorrhage.

Before the lab results came the doc said my stomach looked ok, small intestine was inflamed and my colon that is left looked ok! Not consistant with lab results.

If someone can help me make sense of my story i would appreciate it. Shortened story::: I am 44 and my stomach issues started in my teens with stomach pain high up. In my 20's I began to have extremely urgent diahreah after eating and extreme pain and cramping low. These episodes consumed my life more often than not. ER visits said probably colonitis back then without testing. At 41 yrs old, 2 wks after my 12 year old was in coma and almost died (extreme stress), I went in to get complete hystorectomy. 2 hours after arriving home (after eating) I felt pops in my belly and doubled in pain that was worse than 3 childbirths!! Went back to hospital by ambulance. Much more to this story but trying to keep short. Ended up with ruptured colon, severe peritonitis that almost took my life, sepsis, illius, 40% of colon removed, and 31 days later left hospital with a colostomy bag. Dr.s did not tell me much and I was given alot of morphine (which caused extreme pain in my abdomen every time they injected it).!! Doc just said probable cause was diverticulitis. I had had a colonoscopy 1 yr prior that a small town old doc said was normal. I was shocked that it was because i had bright yellow sometimes florescent yellow diareah that sometimes were mucusy, sometimes greasy, sometimes foamy, every day at least 6 to 10 times a day. And he said NORMAL and got mad when i questioned his findings. 1 yr later i had a colostomy bag!! I had it for a little over a year and had it put back together (wish i hadnt!). Now i have belly pain every day, diareah to soft at least 8- 15 times a day, nausia several times a day. I am miserable. My low back and legs start to hurt, and various joints have pain at different times & I get sores in my mouth. The doc that did the colonoscopy just said, "Well, it could be celiac disease, crohn's, or UC. Small town in the boonies. What a diagnosis!! He wants me to see a Gastroenerologist but I dont have the money to as I am forcing myself to work in misery to get insurance (and its not going well) so I can get medical care. So in the meantime till i can get medical care - anyone have any idea what i may be suffering from??? Feel free to ask any questions. I just want opinions - i know you are not doctors and cannot diagnose but I figure you all know these diseases and symptoms pretty well. Please give me any ideas, opinions or whatever. Thanks for listening. DESPERATE in waiting...... :confused2: :ybatty: oo: I can identify with these icons!! LOL. Please help decifer the lab results too.

 

[sassymomma]

Thank you for responding Shantel. I am just in a state of confusion. Not asking for diagnosis and wont take opinions as such but want to know what it ""sounds like it could possibly be "" so I can research at least till i can get seen. Personally i think crohns or UC. Lab report does say chronic colitis with ulcerations as well so is that the same as UC?? I will get insurance soon and be able to see a GI doc. What is the doctor specialist title I should search for to see? Is it a Gastrointerologist?? or another specilalist?? What are the best diagnostic tests to request to get right to the point as I dont want to waste money and time?? These are some of the things I am wondering if someone can help me figure out. I will have to definatly travel to see any specialist.

 

[Guest]

hi Sassy.. omg girl, i wish i could fly you over to the UK right now - even though our health service leaves a lot to be desired, we do get seen and we get treatment, no matter what our financial status is.

ok.. to me (and again, i'm no doctor) it sounds like either UC or Crohn's.. the fact that you have inflammation, mucus, bleeding, ulceration, plus it does mention colitis in the report. definite diagnosis needs to be made, certainly, but i suspect that maybe the meds needed to calm things down might be the same no matter which of two it turns out to be. the doctor you're seeing at present - hasn't he suggested ANY medications at all?

i second Shantel's advice to get seen by someone else.. you need a Gastroenterologist. sometimes you really need to get tough and insist on things and this is one of those times.. don't give up, get on the phone and ring every hospital you can think of within reachable distance.. and when you get an appointment, take that report with you.

lower back pain is common with any kind of bowel condition which causes discomfort or inflammation, joint pain is common with Crohn's, and in fact anything which makes us debilitated. mouth ulcers are also common with Crohn's.

regarding tests, usually biopsies done during endoscopy or colonoscopy are pretty good at telling what's causing the problems, also blood tests can show a lot about the patient.

i'm not surprised you're miserable.. wish i could be of more help!!

 

[kenny]

I really feel for your situation. This sounds quite troubling and upsetting.

Inflammatory Bowel Disease (IBD) is sort of the umbrella that all this falls under. I don't think further classifying it does much good from the perspective of what "WE" the patient can do. I leave the minutia of classification to the doctors.

I really don't appreciate my small town family doctor meddling with my crohns either. That is what the GI team in the city does for me. I am lucky to live in a country that takes care of peoples health outside of commercial enterprise so I have access to a GI team for free. What I learned through them is Diet first! That is most likely the trigger to cause inflammation. Inflammation reduction second through drug therapy. Surgery thirdly to remove damaged section of the system that are beyond healing.

My crohns diagnosis is "consistent with crohns" as they have not established the presence of Granuloma from the biopsy material. But it does not seem to matter for treatment. It really doesn't make a difference what it is specifically because it is still and IBD regardless.

 

[sassymomma]

Thanks Ding and kenny, No the doc did not suggest any medications. The doc that did the colonoscopy was a Gen. Sergon. My family doc only gives meds if you know what you need and ask for it. I dont know anything about these meds or what can help. I cannot seem to find good information on what to or not to eat either. If anyone can help me understand these two things too, this can help me as well. Thanks again. I appreciate any response.

 

[Guest]

it just seems so wrong that you've come out with the colonoscopy report showing there's definitely something going on - and been left, with no advice, no meds!!

i don't know whereabouts in the world you are.. but maybe try googling urgent gastro care or something, for your area. also, is there anyone who could help finance an appointment with a GI - maybe a family member.. i don't know how things work where you are but here in the UK, we can 'buy' a private appointment with a specialist, as a one-off, without having to stay on their private list forever. i dunno, i'm just trying to think of ways you can get to see someone soon.

diet-wise.. have a look through the forum here (do a search) on low residue diets.. i think maybe a gentle diet right now would be good, easily digested foods. the thing is.. you probably need much more than simply an adjusted diet right now, your absorption might be poor, you may need B12 injections, or iron, or Vit D, calcium.....not to mention medication.. really it's an impossible task to undertake diagnosis and treatment by yourself.

 

[kenny]

yea the food and diet section on here is great. There are a lot of different foods because the effect of this disease is so different between everyone. Low residual is great as it helps cut out insoluble fiber. that is stuff that just passes right through you and puts unnecessary load on your guts. Sometimes we cant even tolerate that diet though and go to liquid type diets for a while.

But that only helps to slow down reoccurring gut pain. Like Dingbat says, this can be very serious and needs medical attention. I had an abscess in my abdomen that was as big as my liver! had that not been found and dealt with . . . . . Get in to see a GI team when you can. There should be one at every major hospital.

 

[Regular Joe]

Hi Sassy,

I can identify with the ??? diagnosis. My girlfriend has been flaring for many months and I pretty much knew the symptoms. But when I started getting them, I was saying "naw, it can't be!" For some reason, MD's like to tiptoe around the diagnosis for a few years. Well my first colonoscopy, they were a little more decisive. The lab report read "Mild Crohn's ???" They danced around it in person until I said send me the paper please.

The part that is really irritating (mentally that is), the first GI wants to "wait a couple months" to see if this heals. What's the use of another follow through or other expensive tests while it's (my ileum) still inflamed. Naturally the small intestine is going to appear constricted.

Well my "Mild Crohn's ???" isn't healing, which doesn't seem so mild anymore, and the GI hasn't returned my calls. I'm visiting a second GI in October. In the meantime my PCP, who has known me at least 20 years, is going to see me. He's heard my whining and woes, so he's clearly indicated that he's not at adverse to prescribing something. I opted to give the GI the benefit of the doubt last week, but my calls weren't returned, and this is kicking me down too much.