Share Facebook
Crohn's Disease Forum » Support Forum » Undiagnosed Club » Biopsy results are in...


01-15-2015, 10:36 AM   #1
jkd916
 
Join Date: Jan 2015
Location: Kansas
Biopsy results are in...

Finally heard back on the biopsies taken from the ileum, etc. All other areas came back healthy. G.I. had found ulcers in the ileum during colonoscopy and now says that there was inflammation found but it was not chronic, so he is not diagnosing Crohn's.

I'm just..confused and not a little worried. It's been nearly six months since having the episode of pain and sickness that set me on this route and I had hoped that the biopsy might bring answers and a possibility of feeling better. Instead I look forward to more tests and waiting.

I have read on here that many people have waited years to find out what's wrong, and I feel foolish by comparison. I'm just feeling a little down this morning.

Anyone have any ideas what other things might cause the inflammation and ulcers? Tried to do some research but Crohn's and UC are just about the only things that crop up.
01-15-2015, 05:46 PM   #2
Trysha
Senior Member
 
Trysha's Avatar
 
Join Date: Aug 2009

My Support Groups:
Hello jkd
Welcome to the forum
Have you been scheduled for further investigations
I am not sure how your GI can conclude the inflammation is not chronic if this is the first colonoscopy
How long have you been followed for the inflammation
Have you been given any meds to help you
Perhaps you need a second opinion
Feel better soon
Hugs and best wishes
Trysha
01-15-2015, 06:52 PM   #3
jkd916
 
Join Date: Jan 2015
Location: Kansas
Thank you, Trysha.
This was my first ever colonoscopy. I'm not sure how he came to the conclusion that it was not chronic inflammation. He would like to further investigate the intestines with a pill cam to see if there is any other inflammation. The only medicine he has prescribed is hyascyamine for cramping and directed to take as often as needed.
01-15-2015, 10:55 PM   #4
Trysha
Senior Member
 
Trysha's Avatar
 
Join Date: Aug 2009

My Support Groups:
Hi JKD
The pill cam is a very good way to investigate for iBD
It's a good start and hopefully you will have the test very soon
Keep in touch and let us know how things work out for you
There is lots of information to be found in the forum and maybe you have already
Found it
The tool bars at the top of this page will lead to the info
Feel better soon
Hugs
Trysha
01-16-2015, 01:03 AM   #5
jkd916
 
Join Date: Jan 2015
Location: Kansas
Thanks again, Trysha.

During all of this, I have found that I can be quite impatient awaiting results. I am clearly one of those "instant gratification" individuals.

I am hopeful of the pill cam. Perhaps it may see things that the other tests may have missed. I don't consider myself particularly plagued by symptoms, but they hang around nonetheless.

I have found a couple of threads with eerily similar stories, but am doubting whether or not I really fall into the IBD category. I should state that I am also scheduled for a hydrogen breath test sometime in February or March, I believe. I suppose if all else fails, perhaps that one won't. I know that anyone who has gone or is currently undergoing these tests feels my pain and that is somewhat of a comfort.

In September I went into the ER after about 5 hours of intense abdominal cramps, several loose bm's, and intermittent nausea. I initially believed that I had bad gas cramps, as it is not unusual for me to have gut-wrenching ones from time to time that eventually pass with the gas. These, however, were nearly unrelenting; relapsing into only slightly less painful cramping for a few minutes only to once again wrack me with intense pain that had me in the fetal position and a cold sweat coating my face. The doctor in the ER gave me an anti-spasmodic, anti-nausea meds, and fluids and told me she thought it was just "something viral". The only test they ran was a blood panel which indicated a high wbc and not much else. I distinctly recall her telling me that to run any other tests seemed unnecessary and would be expensive (which, to be honest, I was somewhat grateful for when my bill finally came through.)

However, for the following couple of months, I struggled with very frequent, very urgent diarrhea and/or loose stools. I actually felt like my life revolved around my bathroom. It became the norm to frequent the toilet between 8 and 10 times a day and the cramping, though mild by comparison to the night I went to the ER, was persistent. I had several appointments with my GP in those months, where I was given a pelvic exam first, then referred for more blood labs (wbc had returned to nearly normal count) and an abdominal ultrasound, suspecting it may have been my gallbladder acting up.

After clearing all of those, I was finally able to convince her to give a referral to a family G.I. who had me scheduled for a colonoscopy and upper EGD within an hour.

Thinking back on it now, I was never given any stool tests and question that a little, but at least it brings you up to date with where I'm at now.

I should state that this is not my first rodeo with abdominal issues. I have had at least one other abdominal ultrasound in the last 5 years for suspected gallstones that came back negative, and have had a fecal occult test in the past for an unrelenting bout of diarrhea that lasted about a month or so, although I cannot recall the results of it now.

Anyway, long post I know, and am sorry to burden you with it. It is nice for me to finally be able to share with people who know the tune to this and other stories, though.
01-16-2015, 02:53 AM   #6
Jennifer
Adminstrator
 
Jennifer's Avatar
Here's a list of other medical conditions that can cause inflammation and ulcers in the ileum (Ileitis): http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2914216/ Generally when you have chronic inflammation there will be scaring as well which can be seen during a scope. Your tissue will inflame then heal which creates scaring. It can sometimes take a long time to diagnose Crohn's because many other illnesses mimic it. This doesn't mean that IBD is ruled out though.

Hopefully other tests will help figure out what's going on. Keep us posted.
__________________
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
01-16-2015, 11:44 AM   #7
jkd916
 
Join Date: Jan 2015
Location: Kansas
Thank you, Jennifer. Finally had a good source of info that doesn't directly point to IBD!
03-10-2015, 09:41 PM   #8
jkd916
 
Join Date: Jan 2015
Location: Kansas
Update:

I have not heard the final numbers on the hydrogen breath test yet, but was told by the nurse who performed it that my numbers were slightly elevated, but not above that magic number of 21 (which, evidently, means it was negative).

I am scheduled for an MR Enterography (?) tomorrow evening, so perhaps that will shine some light on the situation.

I have, since my last post, developed a fissure for the first time in my life and it is terribly painful! I never even knew such a thing existed. I truly thought I might just have had a bad bout of hemorrhoids, but that was not the case. Still struggling with the fissure and have, consequently, become very constipated (yet still managing to have two hard stools a day...naturally...) and the fissure keeps re-opening and bleeding.

So, that's all I have for you for now. Here's hoping the treatments help with the fissures and they find something useful from all of this testing. Struggling to remain hopeful for news, but I will keep trying.
03-10-2015, 10:55 PM   #9
FrozenGirl
Senior Member
 
FrozenGirl's Avatar
I hope the MRE will provide some answers for you and hopefully you will be able to get on some effective treatment.
__________________
Dx: Ulcerative Colitis, Nov 2013
Currently on:
Mezavant 4.8g
Vitamin D 1000iu
Calcium
Tecta 40mg
Remicade: 600mg, every 4 weeks
Methotrexate: 15 mg (injection)
03-11-2015, 12:30 AM   #10
Jennifer
Adminstrator
 
Jennifer's Avatar
Good luck with the MRE jkd916. Hope it helps find some answers. Let us know how it goes.
07-02-2015, 10:22 PM   #11
jkd916
 
Join Date: Jan 2015
Location: Kansas
Just an update:

The MR Enterography results were all normal, besides a slightly enlarged spleen.

I actually did have a good month or so of feeling much better, and told my G.I. so on our follow-up appointment in May. He seemed pleased but also a little less optimistic than I was about my little honeymooning period of feeling better, and he was not wrong. Symptoms began to reappear about two weeks ago after a relatively painless menses, and they were no fun. RLQ pain, stabbing and burning to the right of my navel, lower into my right hip, and cramping pain in the lower right of my back almost worse than any period cramping I've ever had! Oh, and never forget the urgent, loose bm's. Can't leave those out!

I also no longer consider it coincidental that, when these pains come on, my gums start bleeding quite heavily in my mouth for about the first 3 days or so. More of a nuisance than anything really painful, but I have always been diligent about brushing, flossing, and etc. Never had the problem before in my life until the last couple of episodes (flares?).

Anyway, I am scheduled for another colonoscopy a week from Monday, and I'm hoping that they find anything that can aide them in finding a course to relieve my pain. Had labs done and everything was normal. My G.I.'s nurse practitioner (I believe that's what she is) has put me on Xifaxin for a couple of weeks to see if it helps. A non-FDA approved antibiotic that, although I tested negative, was created to treat SIBO but has also been found to help IBS sufferers. I'm only a few days in and don't feel any difference so far.

Hope all are well on here. I'll continue to try to update as I remember.

-Jennie
07-11-2015, 11:52 PM   #12
FrozenGirl
Senior Member
 
FrozenGirl's Avatar
Well I'm glad that you had a period of feeling good but it's unfortunate it ended. It does however sound like you have a good doc who is really trying to find out about what is going on with you. Hopefully the scope is helpful in diagnosis.
07-31-2015, 10:58 AM   #13
jkd916
 
Join Date: Jan 2015
Location: Kansas
My colonoscopy was more successful. G.I. found that the ulcerations and inflammation in my Ileum had more than doubled since the first colonoscopy five months prior. Pathology on the biopsy again came back negative, but he started me on Entocort for two months anyway. He is now 99% convinced that it is Crohn's. He also gave me Tramadol to help with the pain at work. I am about two and a half weeks in on the steroid and so far it has been bumpy. Some days I have felt on top of the world and nearly normal, but most have remained about the same as usual. I believe I am still in the midst of the flare and the good days show that the meds are working but are, as of yet, still in the superficial "feel good" stage. Anyway, just thought I'd update. Thanks for the support.
07-31-2015, 04:50 PM   #14
Jennifer
Adminstrator
 
Jennifer's Avatar
Thanks for the update. What dose of Entocort are you on, 9mg? Some people have mentioned it taking up to three weeks for Entocort to really start working. Hopefully you'll continue to improve. Did your doctor mention any sort of plan for when the 2 months is up? Once the steroid is stopped chances are your symptoms will return. Keep us posted.
09-05-2015, 08:40 PM   #15
jkd916
 
Join Date: Jan 2015
Location: Kansas
Update:
I have now been on Entocort (yes, Jennifer, 9mg) for roughly 6 weeks. It did take a few weeks to feel better, and then I felt great! My bathroom habits were nearly normal, and the pain slowly went away. I was taking tramadol nearly every day just trying to get through work (lots of bending and lifting at my job, so very uncomfortable for me). I am due to see my G.I. and his N.P. on the last week of my dosage to discuss how I'm feeling and where we will go from there as far as treatments and maintenance.

I am feeling very down tonight, which is why I popped onto the forum. I have not felt well the past few week: excessively tired, abdomen is tender (cats are constantly trying to walk on it while lying down and I practically have to throw them off of me), and my bathroom frequencies have picked up the past couple of days. I can't help but feel like a hypochondriac! I am so sad that I am symptomatic again, though, that I know it's not all in my head. Just feel exhausted by the struggle. A few days will mark the one year anniversary of this journey and I had so hoped to be well again.

I'm not sure what the next couple of weeks will bring, but I am hopeful of being better. Thanks for keeping up with me, friends. Hope all are well.
09-05-2015, 10:32 PM   #16
Jennifer
Adminstrator
 
Jennifer's Avatar
jkd916 what has your diet been like lately? Sometimes when we start to feel better we may eat some things that have more sugar, grease and fiber and those can bring more loose stools and pain when you have active inflammation or narrowed sections in your bowels. Have you been sticking with a low residue diet? If you have diarrhea then you'll also want to increase your fluid intake.

Sorry to hear about the set back. If things don't improve by Monday or get worse then be sure to contact your doctor.
09-05-2015, 11:02 PM   #17
jkd916
 
Join Date: Jan 2015
Location: Kansas
I have been following a pretty limited diet for the past few months. I did protein shakes that were low in fiber and sugar 3x/day for about a month just because it was too painful to eat. I still use protein shakes about 2x/day because they are quick, easy, and I know I tolerate them well. Aside from that, I have been consuming things like breads, rice, cheese. Things that I have tried and had no aversion to. I'm just not sure whether I just have this continuous flare and the Entocort is giving me a superficial feeling of wellness, or I'm possibly just beginning a flare again. The last flare lasted from the last week or so in June through late August, so I'm wondering if it's the same one.
09-06-2015, 01:01 AM   #18
Jennifer
Adminstrator
 
Jennifer's Avatar
It very well could be be the same flare. Flares can last a very long time when they aren't treated properly. With steroids it is possible for your symptoms to fluctuate because the dose may not be enough to fully control the inflammation. With Entocort location of the inflammation is also a factor because it's only effective in the ileum and ascending colon. My GI also mentioned to me that Entocort can be given in a higher dose than 9mg if needed but you would have to talk to your GI about that. Hopefully your symptoms will subside but be sure to contact them if this continues.
09-06-2015, 06:10 PM   #19
jkd916
 
Join Date: Jan 2015
Location: Kansas
As far as I'm aware, all of my ulceration and inflammation is in my ileum and cecum, so the Entocort should work pretty well for it. I also just finished my period, so I'm wondering if that's what did me in. However, I don't really start having gut issues until the very tail-end of my menses, so I find that a little odd. Maybe it just throws everything out of whack. Anyway, I feel pretty good energy-wise today, but I've been in and out of the bathroom the entire day. I just started to slow down a couple of hours ago, but I still get the urge to go. Guess my body just has nothing left to produce.
09-07-2015, 03:32 PM   #20
Jennifer
Adminstrator
 
Jennifer's Avatar
Hopefully it was related to your menses as many women have mentioned issues during that time. I've also noticed certain medications affecting my menses as well so that could be a factor here. Keep us posted.
09-14-2015, 08:56 PM   #21
jkd916
 
Join Date: Jan 2015
Location: Kansas
Okay, so I went in for my follow-up appointment today. I have been referred to another G.I. who specializes in IBD and has studied at the Mayo Clinic and have an appointment at the beginning of November. My G.I. is stumped, basically. I did not respond to the Entocort as he had hoped, so we're going to try Nortriptyline and another MR Enterography to see if there have been any visual changes outside of the intestines after 6 months, especially since there were so many internal changes in July. I hate to be such a damper, and I really hate seeming like a hypochondriac, but I am just totally bummed right now! I know I should be feeling better knowing that we are seeking out every option and I have a G.I. that I know is doing his best for me, but sometimes I just feel like giving up and saying, "I'll just live like this forever."

Anyway, I'll try to keep updated as usual.
Thanks for following my post and sending your support. It is much appreciated.
01-08-2016, 10:08 PM   #22
jkd916
 
Join Date: Jan 2015
Location: Kansas
Wow. Going back over the past year + has been eye-opening. I have quite a bit to update about, if anyone follows this any longer.

I saw another G.I. in November for a second opinion. She went over the colonoscopies and other test results and concluded that my symptoms were more IBS than IBD, but wasn't totally convinced that I did not have both. As she stated, they're not mutually exclusive and the ulceration and inflammation in my ileum was still a concern as IBS does not cause mucosal damage and there are only a select few illnesses that do. She ran a stool test for several toxins and food poisonings, as well as a calprotectin test which came back negative for inflammatory markers. They suggested I try the FODMAP diet for IBS to see if it helps to alleviate my symptoms.

In December I continued to be symptomatic and in pain (I might also add that I developed a fairly severe back pain at this point, completely unlike any day-to-day back pain, and had no recollection of injuring the site and so reported this as well. They were not sure it was related, and so did not investigate it), so I called my nurse and was scheduled for another appointment with the nurse practitioner who consulted with my original G.I. and had me scheduled for another colonoscopy a few days before Christmas. The colonoscopy findings were not much spoken about, aside from the fact that the ulceration and inflammation was still in my ileum (looked worse to me, but I don't have the expert eye) and that this time the G.I. took many biopsies throughout and ordered tests for lymphoma and precancerous changings as well. With the holidays, it took a little longer than usual to hear back about the pathology, but just this week I did. The biopsy from my colon revealed findings consistent with a diagnosis of Crohn's Disease.

My doctor has asked that I again do another round of Entocort in hopes that it make work its magic this time, but has also stated that we may have to consider biologics such as Humira which, quite frankly, scares the hell out of me. Does anyone have experience with this? Also, it's too late to call and question my G.I.'s nurse tonight, but what does it mean if all of the superficial inflammation and ulcers are in my small intestine, but the positive biopsy came from my colon? Could that mean that my colon is infected as well?

I have so many fears and questions, and I know that no one here is an expert and I should consult my G.I.'s office, but it's late and I find myself deep in thought on this. It has been an eventful week, for sure. Just trying to find a way to take it all in and answer questions for my family.
01-08-2016, 10:22 PM   #23
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Glad you finally got a dx
It's very confusing in the beginning
Fwiw Ds is 12 and has successfully been in grades 2-6 with crohns
Grade 3-6 on biologics remicade and past three years humira
Got the same normal cough and colds as others kids and does normal kid stuff
Plus his scopes look good
__________________
DS - -Crohn's -Stelara -mtx-IVIG
01-08-2016, 10:31 PM   #24
jkd916
 
Join Date: Jan 2015
Location: Kansas
Glad you finally got a dx
It's very confusing in the beginning
Fwiw Ds is 12 and has successfully been in grades 2-6 with crohns
Grade 3-6 on biologics remicade and past three years humira
Got the same normal cough and colds as others kids and does normal kid stuff
Plus his scopes look good
Thank you, Penguin. Can you explain fwiw ds? I'm new to the lingo around the site and some things are harder to self-define than others. I suspect I will be on here a lot in future so would be nice to know.

How severe is his disease course? I had assumed that biologics were saved for the worst of the worst, but am beginning to see differently. It gives me hope that he is so well with the drugs. I have been sick for over a year now and have some decent days but mostly exhausted and hurting, so it would be nice to be in a better place. Of course, I'm 27, so won't be doing any kid stuff anytime soon that I know of. I think I'd just like to wake up and feel nearly normal in the mornings rather than zombie-like and in pain.
01-08-2016, 11:09 PM   #25
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
I am so sorry. Sending support.
01-08-2016, 11:14 PM   #26
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Fwiw is for what it's worth
And DS stands for darling son.
He was very mild at dx no visible ulcers and only inflammation on biopsy results but should granulomas and inflammation from his stomach to his anus in various spots
No diarrhea only severe constipation .
He started on pentasa - it is useless and did nothing
Then proceeded to fail 6-mp and methotrexate (mtx) which he developed vasculitis every time they lowered the pred while on mtx
He continued to vomit and have belly pain
It took almost a year of trying all the drugs before they decided to try Remicade
So at the ripe old age of 8 he started biologics
Once he was on remicade for 7 weeks he was a new kid
No more steroids no more vomiting and lots of energy

So although the warnings are scary
Simple drugs such as Tylenol also have warning of death and liver failure and Steven Johnson syndrome
The only difference - no is reading the flyer to you

Having a kid who has a semi normal life is priceless
Good luck
01-08-2016, 11:45 PM   #27
jkd916
 
Join Date: Jan 2015
Location: Kansas
Thanks so much. I have found that when I feel good I feel really good, so you're absolutely right: it make be worth it just for the chance. Thanks for all of your help. I'm glad to hear about your ds being so well.
Reply

Crohn's Disease Forum » Support Forum » Undiagnosed Club » Biopsy results are in...
Thread Tools


All times are GMT -5. The time now is 03:02 AM.
Copyright 2006-2017 Crohnsforum.com