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Crohn's Disease Forum » Your Story » Anxiously waiting on biopsy results


09-17-2012, 11:18 PM   #1
starsandbucks
 
Join Date: Sep 2012
Location: Woodland Hills, California
Anxiously waiting on biopsy results

Hi all. I don't even know where to start with my story...

Two years ago I experienced the most intense stabbing pain in my abdomen about two inches to the right of my navel. Eventually it passed and I tried to write it off as a fluke. The pain kept coming back, sometimes intense and quick and sometimes low grade lasting for days. After finally admitting to myself that something was wrong and after being misdiagnosed and handed off to many, many doctors I finally had a CT scan that showed that "something" on my colon. A few days later I had a colonoscopy where the doctor encountered a mass so large in my ascending colon he couldn't get the scope past it. Turns out I had stage II colon cancer. I was 35.

I had half my colon removed (and genetic testing - I do not have Lynch syndrome) and had been healing pretty well. I was having off and on bowel issues that I attributed to losing half my colon. I also have very low vitamin d and b12 (need to get weekly injections) and arthritis in my low back. However, over the past four months I've had chronic diarrhea, sometimes going 15 times a day and the pain was back, though not as intense, in same place where my tumor had been. Sometimes I will have quite bad pain across my abdomen as well. I also get night sweats and the fatigue is like NOTHING I've ever experienced before. Even when I was going through cancer.

I have a pretty great GI doctor who put me on cipro (didn't help), had a stool test (negative) and prescribed colestipol to help with bike salts since I no longer have an ileocecal valve (has maybe helped a little or I'm just trying to convince myself).

I had my yearly colonoscopy last Thursday and my doctor saw some inflammation across my colon but saw a lot of inflammation at the site of my tumor/surgery. He said it looked like Crohn's but we'll have the biopsy results back in about a week. At first I was pretty devastated by the though of yet another chronic, lifelong disease of my bowels where the best I can hope for is remission. But at this point I have been so sick and miserable that if we can put a name to it and get a treatment plan going I will be over the moon.

Anyway, Sorry for the long introduction! Even if it turns out not be Crohn's I feel like colorectal survivors and those with CD and UC are all kindred spirits!
09-17-2012, 11:21 PM   #2
starsandbucks
 
Join Date: Sep 2012
Location: Woodland Hills, California
Oh, and I do not have blood in my stool but I didn't when I had cancer either. I have read that having Crohn's can increase your risk of getting colon cancer but I haven't been able to find if the reverse is true? though I assume so?
09-17-2012, 11:31 PM   #3
Earnellzwifey
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I am so sorry that you are going through this. It is just horrible. I am glad that they were able to remove the cancer. I hope you do not have Crohn's but maybe just a one time infection that will clear up eventually. Please post the results of the biopsy. I know the waiting game is the worst. I am currently being evaluated for uterine cancer and the suspense is killing me.

I hope everything works out for the best. sorry i could not be more help.
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Dx 8/31/ 2012 w/ CD
taking:
Remicade,Librax,Lomotil,Prednisone,Probiotic,
Iron,multi-vitamin, B12 injections, magic mouthwash,
Zofran.

32 medical conditions and counting. 22 pills a day with daily blood sugar testing and urinary cathing.

If you live in the loo , because you always gotta poo , then this is the place for you.
09-17-2012, 11:32 PM   #4
Bethanywrenboyer
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Location: Huntsville, Alabama
I am soory that you have been feeling crappy. I have never had good experiences with cipro. It always made me way more sick than I was before I took it. I am not sure about Colon cancer making Crohn's disease more likely. I suppose that you may be predisposed to getting GI disorders which is perhaps why you got colon cancer. I hope that your biopsy results shed some light on why you have been feeling this way so that you can get some relief from the pain. I will be thinking about and praying for you.
09-17-2012, 11:41 PM   #5
starsandbucks
 
Join Date: Sep 2012
Location: Woodland Hills, California
Thank you! The waiting is horrible. I just want to feel well again because, honestly, I feel like a prisoner in my home. I am still working full time but it sucks having to be "that person" who has to sprint to the work bathroom and then have diarrhea. When I get home I immediately collapse in bed and can't get up the energy to do anything on the weekends.

This forum has helped me mentally prepare for whatever my biopsy results are. Thank you for the kind words! It's hard to not have anyone to share this stuff with.

(sorry for typos and any missing words - I'm typing on an iPad)
09-17-2012, 11:45 PM   #6
Earnellzwifey
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no worries on typos. there are no grammar natzi's here.

I know I have had my share of mishaps, I am usually posting on my iPhone.
09-28-2012, 11:29 AM   #7
starsandbucks
 
Join Date: Sep 2012
Location: Woodland Hills, California
Good morning. So I got my biopsy results and I'm a little bit confused. My doctor said I don't have Crohn's (which is great!) because the inflammation they saw wasn't chronic but I do have Crohn's symptoms. Agh. Here are some of the highlights of the pathology report. Wondering if any of this means anything to anyone here. When I get to doctor's appointments I always forget 50% of the stuff I want to ask and don't realize how confused I am until I'm in the car. Anyway...

CLINICAL INFORMATION:
H/O r side colon cancer, s/p resection. Persistent diarrhea. Ulcers and erosions on both sides of anastomosis. [WHHAAATT???] Red spots in L colon. Are granulomas, pyloric mataplasia present?

FINAL DIAGNOSIS:
A. TI - NORMAL (BIOPSY)
- No histopathologic abnormality

B. TI - APHTHOUS ULCERS (BIOPSY)
- Focal active inflammation with erosion
- No granulomas or pyloric gland metaplasia

C. ILEOCOLONIC ANASTOMOSIS - ULCERATING (BIOPSY)
- Focal active inflammation with erosion
- No granulomas or pyloric metaplasia

D. RECTUM/SIGMOID EROSIONS (BIOPSY)
- Focal active cryptitis
- Rare Paneth cell metaplasia, no other features of chronic injury
- No granulomas

So that's it! I'm having a hard time googling what rare paneth cell metaplasia is but with my cancer history I don't like the sound of it!

He gave me Lialda for the inflammation and also started me on desipramine for gut/nerve pain, which is actually an antidepressant but has off-label use for chronic pain. I took the Lialda in the early afternoon and felt fine. I took the desipramine at bedtime. About 45 minutes after taking the desipramine I had terrible, horrible, awful pain across my abdomen and felt like I had to vomit. I ran to the bathroom and ended up having what I can only call "extreme" diarrhea. I've had chronic diarrhea for about 4 months but NOTHING like this. BUT the last two days I'd actually had pretty normal bowel movements and thought maybe I was on the upswing? But maybe I was just storing all my poop and it came out last night. So I don't know if the horrible episode I experienced last night was due to the Lialda, the desipramine or just coincidence.

Ugh. Sorry this is so long. I haven't taken any medication today and am waiting for my doctor to call back!

Thanks!!
09-28-2012, 09:35 PM   #8
David
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Hi there

I'm paging Aussie and Dustykat to see if either can help you with the rare paneth cell metaplasia question (they're super smart folks). I just researched it but don't feel I understand it well enough to comment and don't want to guess.

Out of curiosity, have you been taking a lot of ibuprofen such as Advil lately?
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09-28-2012, 10:49 PM   #9
starsandbucks
 
Join Date: Sep 2012
Location: Woodland Hills, California
I have taken Celebrex in the past for my arthritis and because there are studies showing it can prevent polyp growth. but I read that it can be hard on digestion so I stopped taking it about a year ago. My endoscopy from last year showed gastritis in my esophagus and stomach as well so that's another reason I've been staying away. Sometimes when my aches are really bad though I just have to throw caution to the wind and take a dose or two.
09-29-2012, 01:22 AM   #10
DustyKat
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When you had your surgery to remove the tumour did you have any other sort of cancer treatment, as in radiotherapy, either pre or post op?

These are my thoughts so take them with a grain of salt! ...

Ulcers and erosions on both sides of anastomosis.
When it comes to Crohn's disease this is a common pattern when disease returns, although it generally recurs on the proximal side of the anastomosis. I know you have said the doc said you don't have Crohn's but I just wanted to draw your attention to the similarity.

Paneth cells are present in the mucosal lining of the bowel. They are normally located in the small intestine but have been found to be present in the large bowel, particularly when metaplasia is present. I think the jury is still out as to why this is the case.

Metaplasia is change in the normal cell and can be a precursor to developing cancer. Much like when a pap smear is done and they say pre cancerous cells have been found.
The reason IBD leads to sufferer's having a higher risk of developing bowel cancer is because of the chronic inflammation that can be present over extended periods of time. The constant stress and demand on the body to heal and repair itself can cause cells to change over time and that change is what causes cancer.

So yes, there are changes but the changes are very early and may or may not lead to anything. The main thing is the doctor is now aware of what is present and it can be dealt with if need be.

I hope things settle down for you soon hun and you are able to find solid answers and lasting relief.

Dusty. xxx
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09-29-2012, 08:33 AM   #11
Aussie
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Hi David and Starsandbucks, in regards to Panath cells, they are normally found in the small bowel mucosa and have an important role in intestinal defence.

Intestinal metaplasia is a term for small bowel mucosa found in areas where is shouldn't be, usually due to the presence of chronic inflammation.

Panath cell metaplasia is when panath cells are located outside the small bowel, ie. colonic panath cell metaplasia. This is usually seen in the setting of chronic inflammation, so this would typically be seen with ulcerative colitis or Crohns colitis, however, you can also see it with diverticulitis and after radiation therapy (radiation colitis), which would make DustyKat's question on whether you have received radiation therapy for you colon cancer quite relevant?

Hope that is helpful.
09-29-2012, 11:18 AM   #12
starsandbucks
 
Join Date: Sep 2012
Location: Woodland Hills, California
Thanks for these really detailed responses! No, I did not have radiation on my tumor. I didn't have any lymph node involvement and so chose not to do chemo either, as it would only decrease my chances of recurrence by 3%. I'm pretty wishy-washy over that decision and if I had to make the decision again I'd probably choose to do it. I try not to get too down about everything but over the last couple of days I've definitely had the "why me?" thoughts going through my head.
09-29-2012, 04:08 PM   #13
DustyKat
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Hindsight can be a bloody awful thing when it comes back to haunt you. I hate it! I don't have IBD, my children do, but I have many a day that the black dog comes a calling and I think back over the days my daughter was so very ill and undiagnosed and wonder to myself...what if I had done this or that, what if I had pushed harder for answers. I guess what I am trying to say is you aren't alone hun and you of all people have more than enough right and reason to be asking why me.

Thinking of you and please know we are here for you.

Dusty. xxx
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