Undiagnosed but have all the symptoms of Crohn's

[MemeSellers]

Hello, I am new to the Forum but have read on here for the last several years. I am currently undiagnosed and miserable. I have been to 3 GI doctors and my current doctor tells me I just need to learn how to live my life, that it's just IBS although I have tried all of the IBS medicine and they do nothing to help!!. I am going to list my symptoms and meds we have tried and any opinions would be greatly appreciated!! Everything began in 2008 after I had my gallbladder out. I am positive I have Crohn's disease but since thee biopsies are always negative, they will not give me a formal diagnosis. I have chronic abdominal pain within 10 minutes of getting out of bed, usually the LRQ or to the left of my navel. I run a slight fever all the time. I cramp to the point of being doubled over in pain. I wake up 4-6 times every night to go to the bathroom. I have diarrhea 10-20+ daily containing mucous, undigested food and has been bloody for the last 8 months. Sometimes my stomach bloats and distends to where I look Pregnant. As soon as I begin a meal, I have to run to the bathroom. Every meal makes me nauseas and I sweat and feel like I am going to pass out, sometimes I get the same feeling right before a bowel movement. I vomit on occasion from the pain. Certain foods will not pass through me, like mushrooms, nuts, celery, meats and fibrous foods. I have had multiple scopes upper and lower, SBFT, Pill Cam. Gastritis and ulcers in stomach and duodenum show on every scope. I have developed arthritis in my back and hips. My joints hurt all the time. I have developed kidney stones since 2012 with no family history. Had to have surgery to remove one in 2013. I am exhausted all the time no matter how long I have slept. I have mouth ulcers in my mouth and on the corners of my mouth. I have also developed Anal Fissures with skin tags. I have tried the NTG suppositories and they will not heal, so I am waiting on a surgical consult for that. I had a cat scan in 2013 that showed Enteritis and Ileitis, small bowel diffusely distended and fluid filled. Elevated CRP, ESR and WBC for the last three lab tests. Vitamin levels are very low such as Vitamin D, B12, Potassium and Iron. My body for the last two months is involuntarily pushing with a bowel movement with nothing coming out except bloody mucous. I am seeing a new doctor next week and hope that he can help me! My brother was diagnosed with Crohn's last year and my mother has had obstructions and a resection last year but she tested negative for IBD. I am just at my wits end and am sick of being sick and tired with no help. I did try Entocort, 9mg daily for 5 months but it did nothing. I take Phenergan when I eat to help with the nausea. I am sorry this is so long but I really hope someone on here can help me! Thank you for listening!
Melissa :ymad:oo::sign0144:

 

[DustyKat]

Moved and bumped.

 

[24601]

Hi! And welcome to the forum!

So sorry to hear you have been struggling with these symptoms for so long

I don't think this sounds like IBS. The severe pain, blood, mucous, 10-20+ bms (and waking during the night), vomiting, mouth ulcers and fevers sound like so much more than IBS. As do the raised inflammatory markers in your blood.

Your symptoms do all sound consistent with Crohn's disease - although of course there may well be other potential causes that need to be ruled out. Your family history does make IBD more likely too.

I would hope that you may get a diagnosis this time with your current symptoms and blood tests. I'm glad you are seeing a new doctor to get a fresh pair of eyes on this and I'm not terribly impressed that your previous doctor left you in this situation! I can certainly understand your frustration and feeling of helplessness at having to deal with this for so long without support. I do hope having the forum and all the people here who go through similar experiences will help as you go through the process (which I hope will now happen quickly!) of getting a diagnosis and starting treatment.

Best of luck! And please do keep us updated on your progress!

 

[UnXmas]

To me you sound very much like you have IBD! How does your doctor explain your abnormal test results? I'm not sure of their significance. I realise they may not be enough for any doctor to make a firm diagnosis, but they must give some clues about what is happening to you. I'm sorry I can't give you better advice than to definitely see a new doctor and keep going with the tests. Does your brother have a good doctor you could see?

 

[MemeSellers]

Hi 24601 and UnXmas, Thank you both for the replies. To answer your questions, my brother lives in Delaware and I live in Tennessee, so I cannot go to his doctor. The abnormal tests have not been explained at all by my previous doctor, he just says it's IBS and walks out of the room. Luckily today is my appointment with the new GI doctor, so keep your fingers crossed and say a prayer for me to get a diagnosis. I am wondering if he will want to do his own scopes or just go by previous records? I had a rough weekend with constant bathroom trips that have now gotten my fissure to bleeding again and feeling like I am sitting on a knife! Still getting very nauseated when eating, so keeping my Phenergan close by. The pain from all the cramping is horrendous today. Any last minute advice on what to say or ask the doctor today??
Thank you again for welcoming me into this forum!

 

[24601]

Good luck! I hope you have a useful appointment with the new GI

I always think it helps to have a notepad with you with a list of your questions and your symptoms written out, so that you don't forget anything you want to mention.

Don't be afraid to say "Can I just take a moment to check my notes?" and take a moment to look at your notes and take a deep breath

Definitely ask, if it becomes necessary, how blood, mucous, 10-20+ bms (and waking during the night), vomiting, mouth ulcers and fevers can be caused by IBS. I hope IBS isn't suggested again though - it just doesn't fit!

I hope it goes well and you get some answers! :ghug:

 

[UnXmas]

My experience has been that doctors like to do their own tests rather than rely on existing ones, though I don't know if that's true of all doctors. Things can change in a short space of time so up to date tests can be useful, though obviously not fun having to go through all that again.

I hope this new doctor will be able to help you. Remember there is something clearly very wrong no matter what doctors have said in the past. Simply giving an honest account of your symptoms should be enough to make any good doctor realise this is not something that can be dismissed as IBS.

 

[MemeSellers]

Good morning all! I wanted to update you on yesterday's appointment with the new gastro doctor. He spent a total of 1.5 hours with me going through all of my symptoms and lab results. He fully believes I have crohn's disease. In reviewing the last cat scan he said that the crohn's is in terminal ileum. He is not happy with my previous doctor at all. Said that the old doctor is notorious for not doing a good scope, meaning he does not get into the terminal ileum when he does it and is bad about doing a scope when you are not fully cleaned out. I have pictures that show that part of my intestine but he says it is just the opening of the TI, that you actually have to go about 4-6 inches inside of it to see anything. Also learned that the old doctor does not read any of his test results, the nurse does. I had the pill cam done but the old doctor never reviewed it, the nurse did. New doctor said he is going to get copies of all the scopes and pill cam results and review them himself so he can see if he can see the ulcers himself and if not we will have to do a repeat colonoscopy and he will get into the place where it is showing on the cat scan. I was very impressed with Dr. Patel and have high hopes that he can help me. I have to go back to see him on 6/11/15 after he has time to review everything to see if he can make the diagnosis. He said that all of my smptoms and blood work match with Crohn's disease. In the meantime, he has prescribed Flagyl for 5 days and also Colestid. Said that since I have had my GB out that I may be making too much bile salts?? I don't know if these drugs will help or not but I am willing to try them. Do you all have any experience with these drugs? I have been pooping blood again this morning. He also said the fissure and the ulcer at the 3 o'clock position on my bottom will need surgery, which I am not looking forward to!! Any other suggestions that will help me? I just want to feel normal again!! It has been so long for that!!

 

[UnXmas]

I'm so pleased you got to see a good doctor! I don't know about bile salts or the medication, but if you start a new thread with that in the title you will probably get replies from people who do, I know there are quite a few members of the forum who have gall bladder issues.

 

[24601]

Very glad that you have found a good doctor who is actually listening AND looking at the tests that have been done! That's really shocking that the previous doctor didn't review the tests :ywow: And yet I can easily believe it

I had an anal fissure and it was successfully treated with topical medication - glycerin trinitrate (nitroglycerin). But mine was caused by constipation so that may have made a difference.

I don't know about the gallbladder/bile salts issue but as UnXmas said there will be lots of people on the forum who know more about that so a new thread is the best way for them to see your question

Do keep us updated!

 

[MemeSellers]

Ok, so I am reviewing my last scope readings and have a question on the definition of what it says: "colon compatible with indetermind colitis".
Does anyone know what that means??

 

[24601]

I believe that means that they see inflammation and what they saw is visually (or does it say biopsies?) consistent with either Crohn's or Ulcerative Colitis. Sometimes they can't distinguish when there is just inflammation in the colon but if there's inflammation in your terminal ileum then the diagnosis would, I'm sure, be Crohn's even if you don't have positive biopsies for Crohn's

 

[MemeSellers]

Good morning all!
I have a question about foods. I have been having this strong craving for dill pickles, and no I am not pregnant! LOL!! I am concerned that eating pickles with the skin may be making me hurt and cramp worse. I have been eating at least 4 spears of Farmers Market pickles along with the pickles carrots that are in the jar. Do ya'll know if they are on the list of do not eat foods?
Thank you!!

 

[24601]

There's really no one list of safe foods or problematic foods for all Crohnies! Diet is such an individual thing with different triggers and sensitivities for each of us, as well as considerations like texture or lower residue coming into play if you have narrowings, for example.

You might find it helpful to have a look in the diet sub-forum here and there's even a thread here where people have shared their safe and unsafe foods - though I think really you have to see what suits you, perhaps by keeping a food diary.