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Crohn's Disease Forum » Your Story » Waiting to receive biopsy results-- do these symptoms sound familiar?


05-31-2014, 07:37 PM   #1
mtd
 
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Waiting to receive biopsy results-- do these symptoms sound familiar?

Hello everyone,

I just had my first colonoscopy the day before yesterday, and the doctor found some ulcers. I received very little information about the nature or size of the ulcers; all I was told was that there were ulcers between the small and large intestines and that biopsies were taken. I have a followup appointment scheduled, but it isn't until July 9th! I'm very worried, since I know ulcers can be a sign of Crohn's disease or something similar. I'm just a little unsure because my symptoms don't fully match those of Crohn's disease. Does anyone with Crohn's, ulcerative colitis, etc. have the following symptoms?: Nausea, gas, bloating, diarrhea or loose/watery stool, headaches, neck pain, eye pain, difficulty getting enough air, fatigue, pressure-like pain in lower right abdomen? Please note that almost all of these symptoms come and go throughout the day/week/month; they are not constant. The most common symptoms I experience are definitely nausea and gas (a lot of burping). In the past several weeks, though, I've been experiencing frequent headaches, including pain so bad that it wakes me up at night. When I wake up, I have neck pain, eye pain, and pain on the top of my head. I also have some tenderness in the front of my neck (on the sides). i also do NOT have bad abdominal pain, heartburn, rectal bleeding, or anything like that. Does anyone have any ideas/suggestions/similarities?? I'm so scared and I feel completely lost. I've been dealing with stomach problems for a year now, but lately it's gotten even worse.

Thanks for any help!
05-31-2014, 07:44 PM   #2
nogutsnoglory
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The gastrointestinal symptoms you are having are all possible complications from crohns disease. It doesn't mean you have crohns but it's certainly going to be important when you find out from that biopsy. Best of luck!
06-07-2014, 05:31 AM   #3
DustyKat
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Hi mtd and

First up, *hugs* to you!

Now, the area where the doctor has found ulcers is the most common area of the bowel to have Crohnís disease, but as ngng has said it doesnít necessarily mean that is what it is but biopsies should help with that.

The symptoms:
  • Nausea, gas, bloating, diarrhea or loose/watery stool - common for IBD.
  • Headaches, neck pain, eye pain - There are many EIMís (Extra Intestinal Manifestations) associated with IBD and headaches and eyes issues/pain are not uncommon
  • Difficulty getting enough air, fatigue, pressure-like pain in lower right abdomen - If you do have Crohnís in your terminal ileum then that would account for the lower right abdominal pain. Also is not uncommon to have vitamin and mineral deficiencies that lead to anaemia which in turn can cause the type of breathing problems you are noticing. Anaemia can also cause fatigue as do many of the deficiencies that ileal disease can cause.
  • Please note that almost all of these symptoms come and go throughout the day/week/month; they are not constant - For many people symptoms will wax and wane.

Not everyone with Crohnís has bleeding or heartburn and although you say you donít have abdominal pain you do in the broader sense as you have right lower abdominal pain.
My daughter had many of the symptoms you also experience.

Now i hope that doesnít sound like I am trying to convince you you have Crohnís! But rather I hope it gives you some idea of where you may fit with the things you are experiencing.

Good luck and keep and posted.

Dusty. xxx
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06-18-2014, 09:16 PM   #4
mtd
 
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Hi there DustyKat,

I really appreciate your input. I'm sorry I didn't respond sooner; I meant to, but I kept forgetting. Anyway, I feel like I've already accepted that I probably have Crohns, just because I've been waiting for what feels like eternity for the biopsy results. I just want to know what's wrong so that I can properly deal with it. I haven't been able to participate in the same activities and events that I did before, and it's making me quite depressed. No one around me seems to understand... I keep getting, "Everyone has to deal with problems" from my dad, but it's a little different because I feel sick almost every day and am essentially incapable of making plans for fear of feeling ill that day.

Also, I had a very tiny amount of bleeding a couple times the week after the colonoscopy, but it seemed to stop after that. I called the doctor's office to tell them and was not offered much help or support at all. It's just very frustrating I know doctors are busy, but I don't think it's too much to ask that he/she still cares about patients.

Thank you again for your message. I hope to hear from you soon.

mtd
07-10-2014, 05:26 AM   #5
DustyKat
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Hey mtd.

I am so very sorry I havenít been back to till now. I had to make an urgent trip to Sydney the day before you posted and am only just back home now.

How are you going? Is there any further news?

You are right to expect, at the least, that the doctor, or someone representing him/her, will speak with you about your concerns. The type of bleeding you mentioned following colonscopy is not uncommon and is due to bleeding that occurs at biopsy sites. I hope it has remained settled and was nothing more than that.

Dusty. xxx
07-10-2014, 10:22 AM   #6
mtd
 
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Hey Dusty,

So nice to hear from you! Thanks for remembering me.

I'm doing okay. Yesterday, I had my follow-up appointment from the colonoscopy, and very little new information was revealed, which is quite frustrating. The doctor just restated what I already knew: there were some ulcers in the colon, along with some inflammation. Yup, that's what the biopsy results said: inflammation. He said the results did not say Crohns, but I could still have mild Crohns based on the pictures from the colonoscopy and my symptoms. So basically, the appointment went like this: "Here is the picture of your colon. It is not as bad as this picture on the wall where the person has Crohns disease. The biopsy results say inflammation. You could have mild Crohns disease or IBS. Bye."

*Sigh*. That seemed like a big waste of time. I don't have any idea what to do next... All he said is that he wants to see me in six months unless things get really bad before then. I have gotten some help from my family doctor lately, though. I had blood work done recently, and the results showed that my vitamin D and iron were very low, so now I'm on supplements. That should help with all the soreness/pain I've been having (neck, head, eyes, etc.).

In terms of my Crohns symptoms, I'd been relatively good until yesterday, when I stupidly ate a brownie and suffered abdominal pain and lots of gas. That's still lingering a bit this morning, but I'll get through it. My lower right abdominal pain went away a while back and hasn't returned thus far. My nausea has also been under control, and no bad diarrhea. Also, I haven't had any more bleeding since the week of the colonoscopy.

Thanks for your concern, and I hope I didn't talk your ear off (type your eyes off?) :P

Best,
mtd
07-10-2014, 10:31 AM   #7
Orchid
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...IBS when there's inflammation clearly visible in the GI tract during a colonoscopy? What? Even if histology came back negative that's an...interesting call. If you have the means to pursue it I'd suggest a second opinion.
07-10-2014, 11:04 AM   #8
NWFM2CROHNS
 
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I just had the same frustrating experience as you. I had a lot of your symptoms, crazy burping but I had diarrhea for 8 days. I had biopsy's done with my colonoscopy and they left me hanging for two weeks! Then at my appointment the GI doc gave no info but said you don't have cancer just mild to moderate Crohn's disease here's two prescriptions.
Anyway I'm looking into a second opinion with someone specializing in crohn's and the related issues(I hope).
I have MAJOR fatigue also which for me is probably related to my anemia that just got way really bad with this last three weeks of what must have been a "flare up" of the crohn's.
Hang in there.
07-12-2014, 09:11 AM   #9
mtd
 
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Hi Orchid,

I'm sorry, but I'm not too sure what you mean. I'm still new to all of this, so I have a lot of learning to do. Does inflammation in the GI tract automatically mean Crohns? It's just frustrating because he said I "might" have Crohns, but I'm no more equipped to deal with it than I was before I started seeing him.

Hi NWFM2CROHNS,

I'm sorry to hear about your experience. Are you taking vitamins? Perhaps vitamin D can also help you. I know what you mean about being left hanging. Asking for a second opinion is a good idea; I'm just not sure how to go about it.

Thank you all for the support,
mtd
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