Not sure if Crohn's need advice

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Sunfower
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Date Joined May 2018
Total Posts : 3
   Posted 5/24/2018 5:51 PM (GMT -6)   
My issues started in 2012. I was having diarrhea multiple times a day for 3 weeks causing back pain, pelvic pain, and swollen colon that i can feel in my lady parts. Went to Dr. Who did an x-ray thinking the back pain was unrelated. Found that my intestines were completely full of stool, mucus and bubbles. Sent me for a CT to check for blockage and found none. Sent me home (because it was the end of the work day) and told me to come back. Ended up with fever and chills. Went back the next week and they took an ultra sound and told me it was my gallbladder. Have since had it removed. One year later had similar symptoms and they told me it was my appendix and since had it removed along with two ovarian cysts. I have reoccurring bouts of constipation followed by days of diarrhea (no blood except from hemorrhoids.) Finally went to a GI in September last year and he stuck me in the abdomen with Novocain and said I was experiencing nerve pain and spastic colon. Told me to go on High Fiber Diet and I should be fine. Well now I am having Migraines, foot cramps, HORRIBLE indigestion that makes me vomit, along with the pain in my pelvic, and lower back. I finally got a new GI and I am scheduled for an Endoscopy and Colonoscopy for the 12th of July. I am a bit nervous, just not what the outcome might be, but excited to finally figure out what is going on. I have never seen blood mixed in my stool, I do fluctuate in weight, but nothing extreme and I always gain it back once the appetite comes back and fatigue passes. Just looking for a little advice, general advice. Hoping for real answers soon. Thank you for any help that can be offered.

Labradorite
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Date Joined Sep 2009
Total Posts : 1116
   Posted 5/24/2018 7:44 PM (GMT -6)   
Hi Sunfower, welcome to the forum. I’m sorry to hear you are not feeling well. Whether you have crohns or not will be up to your doctor to determine. There are lots of different causes for a lot of the things you mention. Have you been to a primary care doctor about these issues/gotten basic blood work done? The endoscopy is a good next step. Have you looked into dietary causes for the indigestion? I have GERD independent of crohns and it requires being very strict and avoiding foods that trigger it. Once it’s set off, it takes a lot to quiet it back down again. In relation to the weight fluctuations, that sounds fairly normal. With active crohns it is frequently hard to gain weight no matter how much you eat, you just keep losing.

beave
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Date Joined Mar 2007
Total Posts : 1724
   Posted 5/24/2018 7:47 PM (GMT -6)   
Good suggestion Labradorite - you should ask your primary care doc to do full blood work (CBC with diff, Comprehensive metabolic panel, esr, crp) and stool cultures as well as stool tests for occult blood - assuming they haven't been done already. All of that can and should be done before the colonoscopy. Those tests alone won't give you any answers, but they will be important pieces of the puzzle that, combined with the results of the colonoscopy, will give a good indication of what is going on.

If a lot of blood tests have been done already, what were the results?

straydog
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Date Joined Feb 2003
Total Posts : 16284
   Posted 5/24/2018 7:54 PM (GMT -6)   
Hi Sunfower & welcome to the forum. The only way to find out if you have crohns is to have the scopes done & be sure to ask the dr to do biopsy's. This is considered the gold standard for dxing crohns & ulcerative colitis. The scopes are a breeze because you will be sedated. It's the prep we hate, lol. But, it's part of it so we just go with it. I would also ask the dr to do a stool test to rule infections & other pathogens. I don't want to say you may have crohns, because your symptoms could be other things.

A long time ago a friend of mine was going through the very same thing as you, major constipation issues or she would have diarrhea. She saw a specialist & had testing & was diagnosed with spastic colon. The dr put her on a medication. I believe it was called Librax & it made all the difference in the world. It did nothing for her constipation, she had to take a stool softner for that. Irritable bowel syndrome was not known about so much back then but much later she was diagnosed with it.

I do not know if you have tried any of the OTC stool softners like miralax, colace or senokot for the constipation. If not, I certainly would give them a try. They usually take several days to get things going & unlike a laxative they should not give you diarrhea. If it turns out to be irritable bowel syndrome the dr should be able to help you with it. People do not have to have crohns to have this condition. My son's wife had it horribly. She suffered for a long time & finally found a good dr. She got her's under control with diet. To this day if she eats something she shouldn't she pays for it.

July sounds so far off, but this type of wait is normal. You might ask the drs office if they have a cancellation list & ask to be put on it. But, you will need enough time to do the prep. Hopefully your scopes will come back fine. Hang in there.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Sunfower
New Member


Date Joined May 2018
Total Posts : 3
   Posted 5/24/2018 11:12 PM (GMT -6)   
Thank you for the welcome. I had a blood test done last year. Not sure the extent of it. I think it was called a chem 14. He tested for h pylori as well and did a chest x ray. He told me at that time that all was normal. He had me taking two zantac a day. I have been taking miralax, but I end up with diareaha so I stop taking it for a while when that happens. I have also taken the Philips soft chocolate chews when the constipation hits. As far as a diet I have figured out some of the things that set me off, the biggest is Dairy products and raw veggies. Like salad. Seasonings will make me hurt too. I try to stick with the high fiber, but at times it does not seem to work. After a while I end up getting "sick" again. I have not had any food allergy testing, and I need to start a food diary. The reason that my appointments are so far out is because my employer is changing insurance in July. When I called to make they called to make the appointment off of my GP's referral they felt that it would be the best to wait until the new insurance kicked in so that it was easier to know who to send the bills to. I have a grandmother with UC a grandmother with CD and both my father and brother have suffered from GERD. Maybe I will get a hold of my GP and ask if we should do blood work again just to be sure that I am going down the right path. I would hate to do the expensive testing of it is not necessary. Thank you guys for the advice.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16284
   Posted 5/25/2018 7:04 AM (GMT -6)   
Sunfower, I think the office person that canceled you because of change of insurance & not knowing who to bill is pretty flimsy. All they need is the usual insurance information & they verify it. If you do not think you can wait that long I would try to get it moved up sooner.

The lab work suggested by Lab try to get done with your GP. Do not cancel the appt with the gi dr. The lab work alone is not enough to make a diagnosis, as Lab said, its a piece of the puzzle. You have a long standing set of problems that need to be completely worked up so please get the scopes done.

Keep us posted.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Sunfower
New Member


Date Joined May 2018
Total Posts : 3
   Posted 5/25/2018 8:13 AM (GMT -6)   
Thank you Susie! I really appreciate all of the good advice.

Labradorite
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Date Joined Sep 2009
Total Posts : 1116
   Posted 5/25/2018 6:49 PM (GMT -6)   
I agree with @straydog. Definitely keep your GI appointment, in the meantime get in to see the pcp, get labs done and work on keeping a food and symptom diary. That way you will go into the appointment with lots of potentially helpful info. It can take a while to get a diagnosis no matter what it is because the answer isn’t always straight forward and it may take trial and error but stick with it
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