Will I ever get a diagnosis?

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SearchingInAZ

SearchingInAZ

Joined
Apr 7, 2013
Messages
13
Hello everyone,
First I would like to thank everybody who posts in these forums for sharing your experiences. This subject is so uncomfortable for me, but knowing that others are going through it really helps! My situation is similar to many others. I am 38 years old. In Dec. 2011 I started having what seemed to be a weekly bout of a stomach virus ( diarrhea, upper abdominal pain, gas, and bloating). This would happen weekly for several months until a year ago when it began happening daily. I saw a gastro doc and she was just plain awful. She performed the colonoscopy and endoscopy. Both were normal,but showed inflammation. I tested positive for H Pylori, underwent the treatment (Prevpak) then tested positive again. After another round of treatment I am testing negative!:ybiggrin: The one good thing about this doc is that she suggested I start a medication (Colestipol) which is used to treat Cholesterol but happens to have a valuable side effect- it slows down the digestive system. So, now instead of daily flare ups of 7-12 hours of diarrhea, stomach pain and nausea, I only get an episode about once every 3 weeks. Much better, but still not good enough when I am missing work monthly. Not to mention, this pill also slows down my metabolism causing a weight gain of 15 pounds so far! :eek: The last time I saw this doc she said the 2 scopes showed normal and I was obviously responding to the pill so I was cured. :eek2: She stated that the problem was a result of having my gall bladder removed some TEN years ago.????I told her, not good enough. I wanted a second opinion.
I started seeing my current Gastro doc 4 months ago. So far, she has totally agreed with me that this is not related to the gall bladder absence. We did the breath test, and it showed that I was lactose intolerant ( I knew that already). So, I have been on a lactose free diet since then. Still has not stopped the episodes unfortunately. I am waiting for the authorization from my insurance to have the pill cam done. I have this aching feeling it will come back normal too!! Ugh!!This past weekend I was rushed to the ER again for dehydration. I had to have several bags of fluids and Phenergran and Darvocet for the pain.I continued to go home and have diarrhea (just pure fluids, no actual formed stool) and vomiting for 4 more hours after being released for a total of 15 hours of pure yuck!! This is the 4th time I have had to go to the hospital for fluids in the past year. The vomiting along with the other symptoms just started 2 months ago. I am so very tired of having my life disrupted. I am a single mom of a 6 yr old, I work 2 jobs (one is a home based business), I home school and am a graduate student. I have no time to be sick! :poo: My current doc thinks I may have Crohn's Disease. All we have found so far is blood work showing that I am Vitamin D deficient and CRP levels suggesting inflammation. Took in more stool samples this morning. The other issue I have recently discovered is what I believe is a fistula. I have noticed that I pass watery stool through my vagina and pass gas as well. This is really the icing on the cake! I reported it to my Dr.'s office but have not heard back about what can be done.
Thanks for letting me vent. It helps so very much to know I am not alone in this!
Tina
 
Hi and welcome to the forum and the club. You're definitely not alone and I'm glad you've found us. Your current doctor sounds like a keeper, I'm glad you're finally being taken seriously and I hope this means you get a diagnosis soon. The pill cam is a really good test to have, so I hope you get approved to have it. What you've described sure sounds like a fistula unfortunately, but there are treatments out there (I know Remicade is sometimes used to heal fistulas) so hang in there, and hopefully your doc will call you back soon. Keep us posted, and let us know if you have questions on the pill cam or anything else. And again, welcome! :)
 
Cat-a-Tonic, thank you for your words of encouragement. I was embarrassed to even mention the possible fistula to my doc until this past week. Crossing my fingers that I will be able to identify what is causing all of this havoc soon!
 
So sorry you've been feeling miserable. Good for you for being persistent and getting a second opinion though!

When you had the colonoscopy, did they do biopsies? Were you put on steroids at all to reduce the inflammation?

Never feel embarrassed to talk to your doctor. They've heard it all I'm sure and sometimes those little details are important.

Keep us posted!
 
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Thank you Mehita! I just can't imagine living like this the rest of my life and just accepting it!There has to be a treatment, somewhere somehow. They did perform a biopsy with both scopes but both were normal. The endo showed signs of inflammation in my stomach. But I have not been treated with anything but the Colestipol, Prilosec, Bentyl and Hyoscamine. The last 3 have had no effect at all on my issues. I am hoping my current doctor will hang in there and help me without giving up on my diagnosis just because it seems complicated.
 
Hi and welcome. "Will I ever get a diagnosis?" ... I am thinking probably YES - (given the fistula and CRP). If the pillcam does not provide answers, you may want to ask for imaging (ie MRE). Good luck!
 
Searching, I'm not surprised those medications aren't doing anything for you. Prilosec is for acid reflux - yes, sometimes reflux can cause stomach inflammation, but if your inflammation is caused by something other than acid reflux, then Prilosec probably won't do a thing for you. The other two you mentioned, Bentyl and Hyoscyamine, are both IBS medications. It sounds to me like you clearly have more than "just IBS" going on so no surprise there either that those two did nothing. I have tried those myself - Bentyl does hardly anything, and Hyoscyamine actually made me worse!

Has your doctor called you back yet about the possible fistula? Have you heard anything further yet about the pill cam?
 
Cat,
I agree with you on those medications. I knew they were to treat IBS, which I knew would probably not help at all. Sure enough, they did not. The Hyoscyamine had a terrible side effect-terrible dry mouth!:yrolleyes: I heard from my Dr today and she wants me to pick up a prescription for Lomotil. I have no experience with this but she says to take it for diarrhea. I will be seeing her in the office for an exam regarding the possible fistula on Tuesday. Still no response from the insurance company about the pill cam. The nurse says they have 15 days to respond. Trying to be patient.
 
Lomotil works pretty well for me. It's like prescription-strength Imodium. It's just for symptom control though, it won't actually heal anything that's going on inside.

Good luck on Tuesday!
 
Hi Searching, just wondering how it went at the doctor yesterday? Were they able to confirm if you have a fistula?
 
Hi everybody! Well I saw the doc yesterday and she stated that the last stool samples sent in showed elevated white cells/lactoferrin levels,which she says is yet another indicator of Crohn's disease. I will do prep for my pill cam tomorrow and no food after noon. (Oh such fun!) Then I will go to the office Friday for the pill cam. She says it will take her a few days to review all of the photos. If that comes back normal she is planning to do some sort of MRI. I am so grateful that she has not given up on me. After explaining to her about the last ER visit, she called in a prescription for Phenergen suppositories. She has been great about providing meds to treat my symptoms. I already called my boss to tell her I would not be in for the next 2 days. My biggest worry right now is that once I take the Miralax/Dulcolax cocktail I will not be able to stop going to the bathroom. Yikes! I experienced that with the colonoscopy but it was a different prep.Crossing my fingers that I will "stop going" after I have cleaned out my system. Thanks for checking in on me! I really appreciate the support! :ghug:
 
Oh, forgot to mention the fistula. I have been referred to a gynecologist to follow up with that because she believes it may be a vaginal fistula. More tests!!!!!
 
I'm glad you're getting tests done quickly and meds too. Good luck with the pill cam! As usual, the prep is the worst part - the pill cam part itself is a piece of cake. It sounds like your doc is really on the ball if you'll get the results in just a few days (it typically takes up to a month to get pill cam results - it took me about 3 weeks). Keep us posted! Hopefully this will get you a diagnosis!
 
Cat, I had no idea it took so long to get the results from the pill cam. I guess I should be grateful that she is moving so fast. Yes, I would be relieved to finally have a diagnosis. Hoping the prep goes well today!
 
Well, the results from the Pill Cam came back normal!:confused2: I just don't get it. I am so bewildered! Every test I take comes back normal..yet my symptoms are obviously abnormal!!:ymad: My doc is submitting paperwork to get an authorization for some type of MRI next. I will have to drive to Tucson to get this done. Which is an hour and a half drive. If I can get some answers I won't mind. So, I guess my Doc may be ruling out Crohn's disease according to the nurse. The only good news I have to report is that the Lomotil has been a godsend. I had to take it when one of my flare ups started this week, it stopped the D right away. Still had stomach pain, but without all the extra stuff! Yay!! So I will have to wait 20 days for the Insurance to approve the MRI. Tic tock!
 
Wanted to give an update. The MRI I am waiting for is MRCP. My GI is looking for gall stones or pancreatic issues. She states that although my gallbladder was removed our bodies can continue to create gallstones in the duct. :eek2: I will say that my stomach pain feels exactly like the pain I felt with the gallbladder attacks. We shall see what we find.
 
Aw, Searching, I'm sorry to hear you still don't have answers. Don't give up, though. And a normal pill cam result does not necessarily mean that Crohn's has been ruled out! The pill cam can miss things and it can't take biopsies, so if there is inflammation that is mild or even microscopic, it will likely miss seeing that. Also, Crohn's can affect the entire thickness of the bowel, so sometimes it's more obvious from the outside of the bowel than from the inside. I've had a normal pill cam result myself and I do seem to have some form of IBD (either Crohn's or microscopic colitis), so it's definitely possible to have a normal pill cam but still have IBD.

I wish you best of luck with the MRI. Keep us posted on how that goes. I'm glad that Lomotil is keeping the symptoms somewhat at bay in the meantime. Hang in there!
 
Thanks for the update. I am surprised too. I am glad the Lomotil helps ... but I wish you didnot have pain. Good luck with your MRI.
 
Finally had the MRCP done! It came back normal as well! :ybatty: I am beyond frustrated at this point. My doc is supposed to get back in touch with me to decided what to do next. I have been off dairy products for 8 weeks now and I have had good results. I have only had to use the Lomotil 2 times during the 8 weeks. Stomach pain is gone. I ate a small bowl of cereal one day last week and was in terrible pain. So, I can conclude that I need a dairy free diet. At this point I am going to slowly try to introduce some fibrous foods (broccoli,oatmeal, etc) into my diet. I miss eating those foods. We will see how it goes.:smile: If the pain does return I have decided to try a gluten free diet next. But I am happy to report that despite having no concrete answers, going dairy free has produced amazing results for me.! Yay!
 
I'm glad to hear some good news from you, but how frustrating that you've hit another dead end with testing. :( Have you tried dairy alternatives? There are a lot out there. I can't do dairy either, but I find I can do goat dairy, so I usually opt for goat cheese. I really like almond milk too, it's creamy and yummy (and I don't even like almonds!). I've heard good things about hemp milk too.

If you're looking to add fiber to your diet, go slowly of course, and look for soluble fiber vs. insoluble. Soluble should be much easier on you - that's my experience anyway. I take 1 tablespoon of psyllium husks every day for soluble fiber, and that's done a lot of good for me. Here's a long thread about psyllium which is worth a read if you're interested:
http://www.crohnsforum.com/showthread.php?t=13856
 
Thanks for the information Cat! :smile:The Dairy free diet has been going well. I love the Almond Milk and just found an ice cream made with Almond Milk (So delicious brand). Yay! On the other hand, I met with my Doc's Nurse practitioner yesterday. It did NOT go well. She wanted to discuss a treatment. This seemed right on time since I just returned from a Disneyland vacation with my daughter in which, I had a flare-up for 3 days of the vacation! I was posted by the toilet in the hotel room for more than half of the vacation. Not good! :poo:So, I met with her and she says she wants to begin a treatment plan to aggressively treat IBS! Do what??? As a sociologist I do lots of research. I had already researched the diagnosis of IBS via DSM IV. One of the symptoms that disqulalifes that diagnosis is the presence of inflammation. :cool2:
I stopped her as she was telling me this is my diagnosis because my tests were all normal. Literally we were arguing as I refused to accept this diagnosis because 1). I was treated for it 18 mos. ago from my primary physician with no change. 2). my blood work and stool tests have both shown elevated levels of inflammation (therefore, discluding me from this diagnosis) 3). I often have mucousy/greasy stools - fat malapsorption (common with Crohn's and Celiacs Disease)3) a documented Vitamin D deficiency (causing me both fatigue and dental problems),4). newly diagnosed rheumatoid arthritis from my Primary Doc. 5)I have a sister with IBS and our symptoms are quite different, mine are more extreme and require daily medication and special diet. 6)low potassium/magnesium resulting in frequent leg and toe cramping. Needless to say, she probably hopes to never see me again after the half hour we argued. She told me that mucousy stools are signs of IBS as were the other symptoms. Wrong again. I have researched medical journals. She needs a better education. So, I agreed to try weltrol(?) once the insurance approves it. Other than that, I am trying gluten free eating. I know this has helped so many people. I started studying what I can eat today and will go through my cupboards today to get rid of what I cannot eat. I have to purchase separate pans for my foods as well. Going dairy free and gluten free will be a challenge, but I am determined to have a normal lifestyle once again. Obviously I cannot count on a doctor to help me with this. I will report back on my results of the GF eating. Have a good weekend everyone!
 
Oh, forgot to add that while I did have the D and cramping/bloating when on vacation I did NOT have the horrible abdominal pain that I usually experience. So , I assume the Dairy free living has helped somewhat! The loss of the extreme pain, IMHO, is a major accomplishment!:ybiggrin:
 
I'm glad you're feeling somewhat better, and I'm glad you didn't let that nurse write you off as having IBS! I agree with your reasoning, it all sounds solid to me. For what it's worth, I've had to argue with doctors in the past too. It's always sad when you feel like you know more than the doctor - the only real solution is to find a better doctor who actually knows their stuff, and make sure you never see that bad doctor/NP again. Good luck with the GF diet - if it works for you, you should feel better pretty quickly. I'm sorry to hear your vacation was affected by your symptoms, that sucks. :( I hope you had a few good days on vacation and that you & your daughter had a fun time in spite of things. Please update about the GF diet, I'll be interested to hear how you do with it. Do keep in mind that some GF foods contain things like corn or coconut, which may make you feel worse. I don't think humans in general are made to digest corn/corn products, and some people (myself included) have trouble with coconut products. Anyway, good luck! :)
 
I can relate to so much of what you've written, and I'm sorry you're going through all of this. As far as the new medication, is it Welchol? That is similar to what I'm taking-- cholestyramine-- for diarrhea. (Welchol is a pill, and therefore, easier to take though it didn't work as well for me as cholestyramine, which is a powder.) It's not going to "fix" any inflammation or underlying issues, but for me, the cholestyramine has helped quite a bit with the diarrhea. I hope it helps you, and I hope that both of us find out what's really going on with our GI systems!
 
Just caught up with these posts. Searching - How frustrating is it when tests come back normal, but you KNOW there is something going on!

I really hope you get answers with your MRI. Unfortunately since my daughter's came back clear, they really don't take her seriously! GRRRR, she is doing better at the moment, but we will be ready to fight again! Fingers crossed for you xx :ghug:
 

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