Crohn's Disease Forum » Your Story » Undiagnosed and feeling lost

07-05-2014, 11:37 AM   #1
jcallshim's Avatar
Join Date: Jul 2014
Location: Lawrence, Kansas
Undiagnosed and feeling lost

So I have been following this forum off and on for a couple of years but more recently these past few months. I am 26 and have been having GI symptoms for at least 11 years. My older sister has severe Crohn's Disease, my mother has/had Diverticulitis, my father refuses to go to the doctor but I have grown up thinking that extreme diarrhea and pain is normal because he always had it. Not sure about blood or other factors into that. This is also the case with both of his parents, with the diarrhea symptoms and my grandfather actually passed away from colon cancer and liver disease, but I am not sure if there was ever any sort of IBD or anything that was diagnosed for him but it wouldn't surprise me if there was. I guess I should start off with the beginning for my own personal experience.

The first symptoms that I remember was extreme gas pains when I was 15 years old, it happened off and on and was extremely painful. But it was something that I didn't to talk about and I thought it was normal so I would just curl up into a ball and wait for it to pass. After that I would have random small fits of diarrhea but nothing that stands out because I was always told it was the flu or something I ate.

I was 17 when I had the first blood in the toilet and this will be TMI but I dont have any other way to explain it. Basically I thought I was having watery diarrhea but what came out was bright red blood and it would fill up the toilet. I was comfortable telling anyone about it, and to make myself feel better I told myself that it was a hemorrhoid that was bleeding. Which I do and did have at the time but that did not explain why it felt like I was "filling up" and then needed to "go" and it was all blood. That happened for a day or two and then just went away. I was also in pain but just felt like the typical stomach cramps. I went a maybe a year until that happened again. with random diarrhea and gas cramps. When it happened again it was almost exactly the same as the first time. Around this time I started having red, hot, swelling around my knees which I went to the doctor was told I had erythema nodosum.

By this time I have just turned 19 and recently found out I was pregnant with my first child. And I dont remember that many symptoms for a few years. Maybe some "flu like" stomach situations but nothing that clearly stands out to me worth mentioning.

Then at 22, I had my second child and a few weeks after that I started having constant diarrhea and then came the blood. I went to the doctor and told her and she told me to start the BRAT diet and if it didnt go away (I was afraid to mention the blood at that point) I would need to take stool samples. This was very intimidating to me so I passed it all off as just weird symptoms after having a baby, even though I had just found out that my sister has Crohn's and had to have surgeries and has been hospitalized numerous times. After a few weeks it went away and I just moved forward again. Also around this time the swelling and redness in my knees has come back periodically.

Here I am at 25, and I am constantly having sharp pains in my abdomen on the right side mostly but occasionally have it in the left. The diarrhea started to happen more recently for the past 2 years getting more and more frequent with so much mucus. It isnt constant but I either have diarrhea or it is hard to go but the stool is not hard like constipation (unless i am dehydrated which I often feel i am)) stools they are small and soft but are hard to get out and i feel the stomach cramps like I should have diarrhea but its stuck. No blood since the last time except small amounts in the mucus.

But those are the symptoms and some experiences with doctors. What really bothers me is my journey with doctors this past year. In January, I started having severe joint pain in my hands, feet, knees and elbows, with the hot red swelling in my knees and large toe joints. This happens almost anytime I stand for more than 15-20 minutes. I went to my GP for the joint pain and she took a blood panel and ANA direct and Anti-dsDNA, and and Rheumatoid factor, all of these negative so she sent me to a rheumatoid doctor and she did even more lupus tests and xrays on my joints. those were also negative and the xrays showed no damage. so no answers there. after that in april i decided to go to an internal medicine doctor and she looked at my blood tests that my GP and rheumy took and family history. she looked me over pressed on my stomach and told me she thought that it looked like I was having arthritis symptoms caused by IBD and told me I needed a colonsoscopy which was scheduled for June 10. At the time I was having the most normal stools I had had in two years and wasnt convinced so she said if they remained normal she would be okay with rescheduling for a later date. Well the GI symptoms did come back and were pretty bad, still no blood. So i went through with the colonoscopy and the specialist (after me calling over and over for my biopsy results) said I had mild lesions in my terminal ileum that could indicate crohns but the biopsies were inconclusive to that. So she scheduled a MRE which those results said the same thing. And thats where I am at.

One other situation is my brother in-law is a oncologist and one of his specialties is gastrointestinal cancer. So I have kept him in the loop and he actually spoke to the doctor who did my colonoscopy (who I havent even spoken too just her nurse) and he isnt convinced that it is crohns because these tests dont say it is and he suggests getting a second opinion, which I support.

I guess Im stuck in this middle area like a lot of you. I dont know what I have, I feel like it could be crohns. My doctor I guess isnt 100% comfortable it is crohns but is willing to prescribe Entocort EC (but I cant afford it even the generic brand and my family wont help me pay for it without being diagnosed or sure I actually need it.) The wait stresses me out, I am constantly second guessing myself about these symptoms.

and I dont know if my GI doctor knows any of these symptoms because I originally went to the internist for joint paint and I've never had an appointment with this GI doctor to tell her any of this. i have only told her nurse a week after my colonoscopy that I was having pain and blood stained mucus in my diarrhea. I feel so lost and like all of these doctors only know half of the story because I myself have just now put the pieces together and the nerve to tell all of the details. I know that that is my fault but now I feel that if i call or go in with this they wont believe me. I dont want to have crohn's or any IBD but it also makes me feel like I am put on the back burner when my family starts to mention IBS.

ugh. I just dont know what to do about any of thise.
07-05-2014, 01:21 PM   #2
Senior Member
Ali29's Avatar
Join Date: Mar 2014
Location: Texas

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So sorry you are having such a difficult time especially with 2 small children. Many of us go undiagnosed for a long time. A second opinion is a good idea, the GI will need to be able to review all your labs, etc. and have all of your information. I would suggest starting a Journal to track your pain/BM/Diarrhea with full descriptions (blood/mucus, etc) also Food Journals can help you track what might be foods that are triggers. Letting this go without any treatment can put you more at risk for more damage. Stress can actually make your condition worse so if there are any relaxation techniques you can try would be good for you. (there are a lot of them out there meditation, yoga, deep breathing, etc) There are also a lot of good souces you can search on this forum also.

Good luck - sending healing thoughts your way!
Diagnosises - Mast Cell Activation Disorder, IBD Small Intestine-duodenum-villi blunted, Bile Acid/Fat Malabsorption, Chronic nausea-vomiting/pain, esophageal dismotility, mucosal edema, acid hypersecretion, Lymphocytic Colitis, Ocular Migraines, gallbladder removed

Current Meds: H1 H2 Anti Histamines, PPI, Enteragam, Lomotil, Phenergan, Percoset

Meds that did not work: Pentasa, Lialda, Zenpep, Entocort EC, Carafate, Elavil, Lotronex, Desipramine, Questran/Welchol severe bloating/pain.
07-05-2014, 03:20 PM   #3
Senior Member
Join Date: Dec 2011
Location: Illinois
Stress certainly adds to any disease, so do try to find an outlet to help yourself...whether it is taking a bubble bath and locking the door for a 1/2 hour or taking a walk...pamper yourself and "get away" mentally each day or each week.

One item to address is diet. I was having similar issues with swollen knee and knuckles...when I finally had special allergy test that then determined I was allergic to corn and that was a side affect; swollen joints. Once I removed it from diet (NOT easy), no further symptoms!

I have since learned "garbage in, garbage out" and realize if I eat poorly I can not expect a healthy body. At least focusing on that for a while may help improve some symptoms.

Feel better.
07-07-2014, 01:01 PM   #4
jcallshim's Avatar
Join Date: Jul 2014
Location: Lawrence, Kansas
Thanks everyone. I have completely changed my diet over the past few years. I do almost all of my cooking at home. Over the past two years I have tried cutting out dairy with no change, so I stopped that. I've also done the same with gluten and have tried low residue. I've tried more fiber and then less fiber. Raw fruits and veggies vs. Cooked. And can't seem to find anything specific that dramatically changes how my body responds.

I guess my biggest question is does this sound like it could be Crohn's? Do mild lesions in my small intestine/ terminal ileum being the only physical evidence of Crohn's? I now you're not doctors and that the in yeah I can get a diagnosis for whatever this is is to trust them but how far do I let this go?

Basically my GI is willing to treat for mild Crohn's disease but isn't ready for a diagnosis but my brother in-law can get me in with more experience doctors that are focusing on IBD at KU Med center in Kansas City. Will I get better answers with that? He also says to not treat anything now because they will probably at least need to do another colonoscopy and it gives them a true idea of what's going on with no treatment. So I go back and forth from being disappointed that was actually going to get some treatment and then actually wanting a second opinion of this actually could be some IBD.

Does IBS cause damage inside? Because I thought that IBS didn't cause damage and that's one of the ways to distinguish between whether it is or not?
07-07-2014, 01:02 PM   #5
jcallshim's Avatar
Join Date: Jul 2014
Location: Lawrence, Kansas
Also I do practice relaxing techniques I'm not perfect at it and do have times that everything feels heavy but overall I do my very best.

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