Newly diagnosed but not sure

[Bowmancrew]

Newly diagnosed

Hello everyone! Earlier this week my gi dr's offices phoned me to let me know that I have crohns and to set up my appt. I am not sure I agree with this diagnoses. He is basing this on a stool test that has occult blood and white blood cells and a blood test of c-reactive protein that came back high. I don't know much about crohns though. About 10 yrs ago I started my gastro issues. A month after I had my first child I had my first bout of d in many many years. It was as painful as labor and I was in and out of the bathroom for a few hours. This happened here and there for a few years .

After I had my second child I would go a week without a BMW an then on the 7th day I would be in the bathroom in pain with d for hours. After 4weeks of this cycle I went to my first gi dr who did a colonoscopy to be safe. They found a precancerous polyp and told me I will need a colonoscopy every 5 yrs but otherwise everything looks good. He did give me antispasm pills and zelnorm. After a few yrs I started getting better. The pain decreased and I started having mild episodes only around my cycle. After I had my third child I was still doing good except now I was having indigestion, burning and nausea. So they did endoscope and said all was good that it was just my ibs.

So I started eating better. More home made got pregnant with my fourth child and after having 3 with food allergies at birth I went on a organic foods in hopes baby would not have any food allergies. Thankfully it did help. I was still doing good just very mild issues around my monthly cycle. Until may when my whole body was messed up. Cycle missed and started with d. Then I went 9 days without a bm. My daughter came back as having a wheat allergy in early aug so even though my celiac test was engine went on the diet with her. It has helped but once again I became c. Until the last 2wks. I am not in any pain and not having d but still in the bathroom a few times a day. I did just get bw for food allergies as well this week. So I should hear back from that soon. I also had my routine colonoscopy done end of July and colon looked fine no polyps as well. So I have at least a health large colon and I am more prone to c then d but do suffer from both. And the pain until recently was always in my upper left and. As many of you seem to have it in the lower right and. So I just don't think I seem to fit crohn as that is mostly d!? And I have good oscopies.

I also feel that even if I do have it, It is still just like ibs in that it is a symptom and I want to know more what is causing it rather then just treat my symptoms and that is it. I do not take meds so I am not really sure how I am going to handle that and my look into alternative med. my really biggest upset is if my children end up with it. When I saw my child with the food allergy have painful d I ached for her. Thankfully we found an allergy(my sister also has a wheat allergy). And she is finally starting to feel better. I guess I will find more out at my appt which is in 2 was.

 

[Jessi]

Hello and welcome to the forum. There sure is a lot of stuff going on with your bowels that could be CD. Some people have C rather than D. Everyone is different.

Check out the Undiagnosed Club. You may find some good advice there.

http://www.crohnsforum.com/forumdisplay.php?f=75

You sure have your hands full with specific diets in your home. My hat goes off to you. Hang in there. :hug:

 

[xJillx]

Hi and welcome! It certainly sounds like you have some GI issues going on. Is it Crohn's? I am not sure. But, to be honest, I am not sure a stool sample is the best why to diagnose. If you are not convinced with this diagnosis, I would certainly seek a second opinion.

However, if you do have Crohn's, I hope it is a very mild case that is easily controlled. Furthermore, don't stress too much about your children getting it. The chances are low (9%). Check out the final section (Passing on IBD) of this article: http://www.ccfa.org/media/pdf/FactSheets/pregnancyfactsheet.pdf

 

[Del]

Hello and welcome to the forum..

 

[David]

Welcome

I think I would want a little more testing done before I accepted CD as a final diagnosis as well. While those blood results are all markers, there are also way too many causes for each of them not to be normal to make a final determination of CD in my opinion.

As suggested above, a second opinion is always a great idea.

I wish you well!

 

[Bowmancrew]

Thank you all for your advice. Do you mind telling me some other things that could cause these results? I was thinking I might have a stomach ulcer as I have had a lot if indigestion, burning, nausea and nights I wake feeling like I have a stomach bug with extreme nausea and cramping(not pain). He dud give me meds that I take for 14 days and would heal my upper GI. However I am done with it and only slightly better. I also have a sister and a child with a wheat allergy. So as I said I just got that done. Celiac was neg for me, my daughter and sister. However the GI dr said he is losing faith in our local lab and plans on doing a genetic test on my daughter in feb at her check up. I always thought allergies. I have lots of air borne and recently discovered my sore tongue issues is partly from oral allergy from apples and bananas. Sorry to write so much I Am just a detailed person and want ad much info as I can get. My daughter also had geographic tongue which hopefully will be better now that she us off wheat. And jessi I enjoy cooking and started cooking most everything from scratch a few years ago in order to eat healthier so going gluten free was not hard. I still make things from scratch just with different flours. Thankfully there are a lot of recipes out there now. Thank you all again for your help.

 

[Jessi]

I really don't know what it could be. All I can tell you is that I had a lot of tests run before diagnosis. They looked for things like parasites, celiac, diverticulitis, and others I don't remember.
I have a couple friends who are both celiacs, but neither of them said they tested positive. I don't know how they both know that they are, though.
I'm really glad you like to cook, because it sounds like your in for the long haul!

 

[David]

Thank you all for your advice. Do you mind telling me some other things that could cause these results?

Sure, let's see:

He is basing this on a stool test that has occult blood and white blood cells and a blood test of c-reactive protein that came back high.

Positive occult blood means blood in stool.

My first one came back positive. OH CRAP I thought. Turns out that fat rare steak I had the night before caused it and the next six I had done to verify the results were all negative. Other potential causes (there are no doubt more):

* Benign (non-cancerous) or malignant (cancerous) growths or polyps of the colon
* Hemorrhoids (swollen blood vessels near the anus and lower rectum that can rupture, causing bleeding)
* Anal fissures (splits or cracks in the lining of the anal opening)
* Intestinal infections that cause inflammation
* Ulcers
* Ulcerative colitis
* Crohn's disease
* Diverticular disease, caused by outpouchings of the colon wall
* Abnormalities of the blood vessels in the large intestine

Source.

I assume you had a high white cell count. That can be as simple as a minor infection. Other possible causes.

CRP is a marker for inflammation/infection. A study abstract you may want to peruse.

Your doctor may be absolutely right. But if it was me, the way my mind works, I would want to understand how he created a firm diagnosis based upon those indicators. I'm also the kind of guy that demands a colonoscopy when he's told he has IBS (turns out I had IBD ).

 

[Bowmancrew]

Great thank you! When I was about 20 I have anal fissures and what felt like blood pouring out of me. The dr I saw at that time just said it was from constipation and eat more fiber. 2years later was the first time I had painful d. 6 years ago I also had a pre cancerous polyp. Thankfully my recent one was good, no polyp. Not sure if her took biopsies as I was a recheck for polyps. I switched dr just after the osopy as felt the old dr was not trying to help find what was wrong and tempts telling me to eat more fiber and gave me antispasms. Which made c worse and never helped d anyhow. So what test would you recommend I ask to help confirm crohns? Ct scan? MRI? My new dr wanted to do a colonoscopy when he got the stool result. Until I told him it was done only a month from my stool. I think I would be a bit more relieved with this diagnoses (after so many years it is nice to finally have something and not feel like it is all in your head.) but the meds scare me. They seem like they have a lot of side effects and do you have to take them for the rest of your life? And do they really help you feel better? In gastro and extra symptoms?

 

[David]

That the new doctor wanted to do a colonoscopy makes a lot of sense to me. But am I reading correctly that you had one done recently?

As for meds, some are very affective for some people, others aren't. Some have side effects for some, others don't. It's about finding the treatment regimen that is right for you. There's lots of info on this forum and around the net about the possibilities. One of the more exciting ones to me is enteral/elemental nutrition. I also think educating yourself and monitoring vitamin and mineral levels is incredibly important for someone with Crohn's Disease.

 

[Bowmancrew]

Yes I had a colonoscopy done 7/31. It was a 5year recheck to look for polyps. None was found and he told me everything looked healthy. Not sure if he did biopsies. I read glutime was good for helping your gi track heal. Is that one that is recommended?

 

[Bowmancrew]

Ok so update. Saw dr yesterday. It was my Prometheus that was abnormal not my crp. He said my levels were normal but I tested positive by pattern. I don't know what that mean but he send me to get another blood test. He said it was new and they just started offering it. He said this will tell us if I do indeed have crohns. He gave me pentasa to take 2 pills two times a day. But I am only to start it if my new test comes back saying I have crohns. Not sure what the blood test they just took is called. I also got my allergy panel. It showed I had a high reaction to rice. Which I eat several times a day since going gluten/wheat free with my dd 3months ago. I also had a moderate reaction to yeast which I eat most everyday as well. Also had mod react to pecans and cucumbers but I dont eat then. There was several low react that he said not to worry about. However a lot of fruit was in that cat and they(especially apples) seem to irritate my tongue. So I am hoping that my issues are just food allergy and not crohns. If anyone has info on the Prometheus blood test, the new blood test he may have ordered or pentasa. I would appreciate it. He told me pentasa does not have a lot of issues with side effects. He also said he does not use prednisone because it does. Thank you all for your help already!

 

[Bowmancrew]

So I got the new Prometheus test back and it is positive patterns for both crohns and ulcerative colitis. My c-scopes were always good so not sure about the ulcers. He also Said I had all four genetic mutated gene. He would go over it more when I see him after the new year. It is thankfully mild as all my inflammatory markers were normal. I started pentasa 500mg 2pills twice day. I am going to be on a wheat, yeast and rice free diet for 4-6wks to let my insides rest from allergens then slowly add wheat to see if I can handle it as it was the one thing I was not allergic to but initially found a bit of improvement. so I will be on a meat and veggie diet with supplemental drinks. Fruit aggravates my sore tongue. I m also to take vit d I think 10000 three times a week but not super sure on that dosage. There is another young lady at my church who is recently diagnosed and having a hard time. I know she also suffers insomnia. I will be sending her to this site as you have all been kind and full of info.

 

[Jessi]

Good luck with the diet. Just a tip, though. Raw fruits and veggies are a common problem for us. If you seem to react to them, try them cooked or canned. I'm glad you're taking the vitamin D too.

Yes, definitely send your friend from church here. I find this forum to be a fabulous resource for me. I hope you do, too. :hug: