Newly Diagnosed and have many questions

[Andrea_3]

Spoke to my doctor today, He has diagnosed me with Crohn's. I'm confused because I don't have the symptoms of it and doesn't run in my family.I was told in the hospital that I had a severe attack of diverticulitis and was admitted with IV antibiotics. This was in December. I also had an attack last April but was sent home with antibiotics. Wasn't as severe as the one in December. Finally had the colonoscopy this month and pathology report came back as "consistent with colitis" From what my doctor says he saw inflammation and said "most likely Crohn's" and that I should have been treated with steroids instead of antibiotics as it was a flare up. Pathology report didn't say Crohn's. Thats what the Dr is saying based on the mild inflammation he saw. So here are my questions.

If Crohn's, why did the antibiotics work?

Should there be other test done, blood, etc to properly dx? What test did you have done to be diagnosed with Crohn's?

Has anyone been diagnosed with Crohn's without the common symptoms I read about?

Doctor prescribing Pentasa. 2 pills 4 times a day. From what he says a lot of people can't tolerate. Starting it tomorrow so we'll see. Anyone have experience with this? What other medications work well with less side effects?

I'm traveling, will be gone for a week. Should I be worried? Any precautions people take when traveling?

Do you have to completely stay away from alcohol? Not that I drink a lot. However, I like the occasional glass of wine.

Any foods I should stay away from or increase?

Been taking 2 tablets a day of vsl3 probotics for about a month. Is this helpful for Crohns?

I also drink Aloe Juice. Just a little daily as I read its good for digestive disorders and an anti inflammatory. I also read that it could be bad. Anyone have info about that?

I really feel like I should get a second opinion as well. I'm just really shocked at this diagnosis. I have been under a lot of stress as well, I'm thinking its playing a role in this. Any information would be appreciated. Thank you.

 

[araceli]

Hi Andrea. Welcome to the Forum. Is always good to have a second opinion. Symptoms are different in everybody, also depends where is located, my kid did not have the "usual symtoms, Cronh's does not run in the family. Tests will be Colonoscopy, endoscopy, sedation rate, crp levels, etc. The test that Dx Crohn's was the colonoscopy in our case. On vsl3 and aloe vera, I think is helpful. But some people don't think so. I went for a second and third opinion. Foods with out grease or spicy. Traveling not bad if you don't have to go to bathroom every 10 min. Hope this answers some of your questions. My opinion only. Best wishes to you.

 

[Andrea_3]

. Tests will be Colonoscopy, endoscopy, sedation rate, crp levels, etc. The test that Dx Crohn's was the colonoscopy in our case. .

Thank you for your reply. did the biopsy come back as "Crohns"? Or was it the same situation as mine "Consistent with Colitis" and the Dr is saying Crohn's. Were the test done while having a flareup? Only blood work that came back abnormal was when I was in the hospital with Diverticultis and WBC was elevated. Everything Normal when I didn't have an attack. Can you tell me when the blood work was done? I learned recently a child can get this too. So sorry to hear that. Hope your child is doing well.

 

[araceli]

My Daughter was diagnosed after 6 months of having loose stools and weight loss. Blood test at first were normal, no blood on stools, not a lot of trips to the toilet. Not the usual symptoms. Thats why it took so long to be diagnosed. When the endo and colo was done she already had damage to her ileum. and biopsy came back as follow... Biopsies of the terminal ileum.. Active cronic terminal ileum ideopatic autoinmmune disease. Consistent with Crohn's. Second one two years after first.... ILEITIS , consistent with Crohn's disease. She had some inflammation of the colon but they were very specific it was crohn's. Ask you doctor how he came to the conclusion that it is Crohn's and not colitis? ask him where is yours located? Her test are only elevated when she has a flare up.

 

[Andrea_3]

My Daughter was diagnosed after 6 months of having loose stools and weight loss. Blood test at first were normal, no blood on stools, not a lot of trips to the toilet. Not the usual symptoms. Thats why it took so long to be diagnosed. When the endo and colo was done she already had damage to her ileum. and biopsy came back as follow... Biopsies of the terminal ileum.. Active cronic terminal ileum ideopatic autoinmmune disease. Consistent with Crohn's. Second one two years after first.... ILEITIS , consistent with Crohn's disease. She had some inflammation of the colon but they were very specific it was crohn's. Ask you doctor how he came to the conclusion that it is Crohn's and not colitis? ask him where is yours located? Her test are only elevated when she has a flare up.

So the pathology report actually read "crohn's"? My doctor is saying "crohns" and that he is going by the inflammation he saw during colonoscopy. Pathology report said "consistent with Colitis"Why I am so confused. Nothing mentioned as damaged. He did say that it was mild inflammation. Think he said right side only. So sorry to hear what your daughter is going through. This is so rough and confusing at the same time. Just took first dose of Pentasa. Praying for the best!

 

[SarahBear]

Welcome to the forum, Andrea!

What symptoms do you have? When the colonoscopy was done, were biopsies taken? Is that what you mean by pathology report (the test results of the biopsies)? If you have any questions about what it says, make sure you have your doctor explain it.

Antibiotics can be used to treat Crohn's (in addition to a maintenance medication, and sometimes with steroids). A lot of forum members have had success with antibiotics.

A colonoscopy is pretty much the basic and most useful test in diagnosing Crohn's. Of course, biopsies need to be taken. There's a blood test that may be able to tell you if you have a form of IBD and which one, but it's not nearly as reliable. If you want to request it, it's called a Prometheus test. I personally was diagnosed with a capsule endoscopy (with the Prometheus blood test and biopsies from a colonoscopy adding to it) because my Crohn's was active in my small intestine and couldn't be seen during a colonoscopy.

There are many, many possible symptoms of Crohn's and usually people are just aware of the most common ones, like diarrhea and weight loss. Some people only have symptoms such as joint pain for years before gastrointestinal symptoms develop. I'm sure there are people out there with unexplained joint pain and no GI symptoms who would still test positive for Crohn's if the tests were done.

I took Pentasa for a little while, and had no side effects. Pentasa is a very gentle medication, but unfortunately it's not very effective in treating Crohn's. Most of the other medications do have more potential side effects and complications, but as long as you watch out for them and keep in touch with your doctor, there's little to worry about.

I don't see why you should have any concerns about traveling. A lot of people with Crohn's do, but it usually relates to restroom accessibility. If you're having problems with that, try to keep a spare change of clothes and wet wipes, paper towels, etc. to clean up with in case of any mishaps.

You do not have to stay completely away from alcohol. A lot of us find that it upsets our stomachs. If it doesn't bother yours, then there's no problem. Make sure it doesn't interact negatively with any of your medications, though.

I suggest you keep a food journal to keep track of what foods aggravate your stomach, if any. Common trigger foods are raw vegetables and fruits, spicy foods, coffee, and dairy products. If nothing specific causes you any pain or discomfort, you shouldn't need to alter your diet. If you want tips on sticking to a healthier diet or using supplements, check out the Diet, Fitness, and Supplements forum, here.

If you feel more comfortable getting a second opinion, then by all means do it! Anything that can make you feel better and more informed about what is going on is good!

:hug: I hope you get things figured out soon. Please let us know how it goes!

 

[Clash]

Was the path report on your colon, just asking since you mention the right side. If so and it said consistent with colitis then that just means inflammation of the colon it could've been UC, Crohns among a couple other things. It may be that there was a skip pattern to the inflammation or the biopsy show that it went below the mucosal layer(UC affects top layer and CD affect through out bowel wall) You should contact your GI and get him to go over the results until all your concerns have been addressed. Good luck I hope you have good results with your medication.

 

[alex1]

hi i was diagnosed with Crohn's when i was 6. you will get a ton of flare ups, such as,sores on the but,in the mouth, and in the throat. other things like headach, and stomach ache can happen to.

 

[Andrea_3]

Welcome to the forum, Andrea!

Hi Thank you so much for your response very helpful and put my at ease a little!

My symptoms are really nothing. No diarrhea ,I don't run to the bathroom, ever. Never been my problem. Thats why this dx doesn't make sense to me at all. Only the attacks I had, went to the hospital April and in December told both times it was diverticultits on the right side through CT scan.

Yes, the biopsy report said " Changes Consistent with Colitis". Dr himself is saying Crohn's based on the "mild" inflammation he saw during colonoscopy. Said was on the right side and saw "a little" in the small intestines.

Hoping all I need is Pentasa. My dosage is 2 tablets 4 times a day. Is that the same with you?

My concern was having a flare up. That pain that sent me to the hospital while on the plane. That is the only symptom or issue I have had.

I'm not a heavy drinker. If I have too much, it would upset my stomach. However, I'm glad to hear not all have to stay away from it. I never had any type of reaction from it.

I purchased the nurtibullet that has specific super food recipes for different conditions. Been staying away from dairy, raw veggies, nuts and seeds because of th diverticula. Also, spicy foods. (which I really miss)

I went to another Dr today, he wants to see the report first, but didn't disagree too much with what the dr had said. But didn't really answer about whether the biopsy report would specifically say Crohns or not.

Again Thank you so much for your response! I'll be sure to update on here when I find out more.

 

[Andrea_3]

Was the path report on your colon, just asking since you mention the right side. If so and it said consistent with colitis then that just means inflammation of the colon it could've been UC, Crohns among a couple other things. It may be that there was a skip pattern to the inflammation or the biopsy show that it went below the mucosal layer(UC affects top layer and CD affect through out bowel wall) You should contact your GI and get him to go over the results until all your concerns have been addressed. Good luck I hope you have good results with your medication.

Yes, they took a biopsy of the colon. So I should ask if its top layer or throughout the bowel wall? He said it was in little spots here and there. Then said right side. Really confused. Wont meet with him until the 27th since I'm going out of town.. Thank you for the info!

 

[Andrea_3]

hi i was diagnosed with Crohn's when i was 6. you will get a ton of flare ups, such as,sores on the but,in the mouth, and in the throat. other things like headach, and stomach ache can happen to.

thank you for the info. Yeah, I don't have any of those symptoms. I have heard that before. Thats why its a bit confusing.

 

[Clash]

Andrea_3 no if the colonscopy showed a bit of inflammation in the small bowel as well then that would rule out UC, ulcerative colitis because it is only in the colon. Now, if the biopsies show granulomas then it is a definite CD and pathologist will sometimes have to have that granulomas box checked to say CD but there are loads of CD patients that have Crohn's but did not have granulomas in their biopsy and that may be why you are getting the results like you are: No granulomas so pathologist didn't get to "check that box" so won't label CD but GI sees inflammation and it is visually indicative of CD.

 

[Clash]

Just to make sure I explained it well, absence of granulomas doesn't mean you don't have CD it is just the gold standard of diagnosis. Many CD patients are diagnosed without the presence of granulomas. Your GI may be better able to explain this to you or maybe one of the other members on the forum.

 

[Andrea_3]

Just to make sure I explained it well, absence of granulomas doesn't mean you don't have CD it is just the gold standard of diagnosis. Many CD patients are diagnosed without the presence of granulomas. Your GI may be better able to explain this to you or maybe one of the other members on the forum.

I will be sure to get full explanation from the dr. Feeling like I am able to ask more questions now with this info you provided. Thank you!

 

[ashlinn]

Symptoms are different in everybody, also depends where is located, my kid did not have the "usual symtoms, Cronh's does not run in the family.

Hmm... there definitely is a genetic link with Crohn's. "Those who have a parent or sibling with Crohn's disease have a 20% (1 in 5) chance of developing the disease." Its not only due to genes though.. there are other causes as well. I could be wrong but this is what my research has said as well as my dr and father (who is 23 years in remission from Crohn's).

 

[Andrea_3]

Welcome to the forum, Andrea!


I just read a thread about Vitamin D. I have been Vitamin D deficient for years! Do you know if this could this be a cause? as well as a possible fix if I start taking Vit D supplements again?