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Crohn's Disease Forum » Your Story » New here. Would like some advice on how to proceed with my medical care.


04-24-2014, 02:05 PM   #1
ktacserv
 
Join Date: Apr 2014
New here. Would like some advice on how to proceed with my medical care.

I will try my best to keep this brief. I am looking for advice from anyone who has BTDT regarding how best to proceed with my medical care. Here's my story:

I am female. A few months shy of turning 30. I have two kids, ages 4 and 5. My medical problems started immediately after having my children. My kids are 11 months apart, so I was pregnant back-to-back with them and consider it as one long 18-month pregnancy. I cannot distinguish when my symptoms began between the two different pregnancies so I will just say that I fully noticed something was wrong when my youngest was about 6 months old - that was 3.5 years ago.

I don't know for sure that I have Crohn's or any IBD type of disease. I am in the process of trying to get a firm diagnosis and treatment plan in place. I am frustrated and that's why I am here.

I've been seeing a primary care doctor since that time and have been diagnosed with generalized anxiety disorder and IBS. I have been taking Lexapro (SSRI), Pantaprazole (antacid), Align (probiotic) daily and xanax and zofran (anti-emetic) as needed for the last 3.5 years. Despite the medication, my symptoms continue to worsen and I am nearing the end of my rope!

At first it was thought that all of my symptoms were anxiety and/or stress related. I do legitimately have an anxiety disorder and need to be medicated for it. It was thought that all of my problems were physical manifestations of the anxiety. I believe that other people see me as a hypochondriac, although no one has ever truly told me that to my face. I can understand why - I am sick way too often for someone as young as I am - it's easy to look at me and tell me "it's all in my head". Perhaps that is part of the reason why I have not pushed harder in the last three years for a different diagnosis, because for the longest time I really did think it was all mental. It's getting worse though and I am now at the point where I really don't care what anyone thinks - I can't live like this anymore.

Symptoms:
Everything comes on in what I call "episodes". I cannot find any triggers or reasons why the episodes begin or end. I used to get them only a few times a year and would just think I am one of those people who gets sick more often...it was easy to blame it on a common cold going around or stomach bug. For the last year the episodes have been cycling at least once a month. Sometimes with only a few days relief in between. I am desperate to get better.

Episodes begin with feeling of flu-like symptoms. Body aches and joint pain, feverish feeling (although nothing registers on a thermometer), extreme fatigue. Within 24 hours the stomach pain begins. Intense pain in my mid-abdomen, sharp and constant. A few inches above the belly button. Loss of appetite, nausea and general queasiness set in. I may or may not have increased bowel movements...but it's never really a definite. Sometimes accompanied by diarrhea, sometimes just an urgency to use the bathroom but the BM appears to be normal when I do go, sometimes no noticeable intestinal difference at all. I have been diagnosed with IBS from the primary care doc because I have had recurring intestinal issues for the last 3+ years...boughts of diarrhea, constipation, etc. but they do not seem to be strictly linked to these "episodes" as the other symptoms are. The pain is constant though and nothing relieves it.

Within 24 hours of the stomach pain I begin to get ulcers all over the inside of my mouth and inside my nose. I stop eating for the most part when the stomach pain begins because it feels like I will most definitely vomit if I attempt to eat. I get intense heartburn with the stomach pain but I cannot tell whether it's part of the episode itself or whether it's because I stop eating during those time periods. This will go on for at least 48 hours but more commonly up to about a week in duration...that's with all of these symptoms occuring concurrently. Just as suddenly as it begins, it will stop. I can literally be sitting at work and suddenly feel as if a cloud has lifted and begin to feel a thousand times better.

I feel it's also important to mention that during the worst of the episodes, my anxiety and depression increases dramatically. I have had suicidal thoughts (no attempts or actions) and some really dark thought processes during those times. Part of it is exasperation at being so sick without relief, part of it is bigger than that. There's definitely some kind of brain-chemical thing going on during these episodes. Maybe I am pre-disposed to that since I already have GAD.

I have heard weight loss is a big factor with Crohn's and these types of diseases. I do not have any weight loss despite the episodes of going without eating. In fact, I have a lot of trouble losing weight no matter what I eat or don't eat. This is part of the reason that I question whether I truly have this type of a disease.

I am not on a diet of any kind at this time. I cook 99% of the food for my family and eat fairly "clean"....meaning I rarely eat processed foods and my groceries each week are mostly whole ingredients which I use to cook with. I do not do anything special though...such as gluten free or dairy free or anything. I have considered it in the past but my doctor advised me to wait until I see the GI doctor for further testing before changing my diet considerably, lest it ruin any tests he might order for me.

I can barely control my eating with these episodes and stick to whatever appeals to me in the moment because I feel like I have no control over my body. For example - when I am actively flaring in an episode, the only thing that I might be able to stomach is toast with butter. Or plain noodles. So I will eat that, and only that, in small quantities a few times a day. Once the episode lifts, I am STARVING and usually have a hard time not stuffing my face! (Probably from going so long without eating any real meals). So it's sort of a fast and binge issue, which I am sure does not help me to lose weight. I am on the high end of my normal BMI but could stand to lose about 20lbs and would be happier that way. I have not been able to think about a diet though with my eating being so irregular. I have also not been able to tolerate exercise...any attempt at exercise and the flu-symptoms come on full strength with the body aches and extreme joint pain. My doctor told me to stick to low-impact activities like walking but those don't really help you to lose weight.

The episodes are taking over my life. I work full time at a high powered job and I have a family to take care of. During these episodes I can barely bring myself to function at work and end up taking a lot of time off. The only relief I get is from sleeping so I will often spend hours in bed or laying on the couch trying to get through the pain. I often rely on the zofran (anti-emetic) to get me through the work day because it eases the nausea and upset stomach feeling. I can work through the pain when I absolutely have to, but the nausea really kills my ability to function. I take OTC cold medicine such as advil and sudafed to work through the flu-like symptoms.

The only testing I've ever had is blood work by my primary care doctor. I do not know the formal names of the blood tests that have been done, but they were testing for markers of the following: thyroid function, lupus markers, rhuematoid arthritis markers, sjogren's syndrome, hepatitis, blood sugar and kidney function markers, crohn's and IBD markers, complete blood count, white blood cell counts, and some others I cannot remember.

Everything I've ever done has come back normal except for the bloodwork relating to Crohn's and IBD. Those came back "off the charts high", whatever that means. I forgot to ask my doctor what the specific test was called and what my readings were. I have a call into her for that information.

I just got those results back a few days ago and that is what brought me here to try to get more information on Crohn's and IBD.

I have scheduled my first appointment with a gastroenterologist - the earliest they could get me in was the first week of June. That is such a long time away to deal with these symptoms.

I am surprised by my bloodwork because I really thought my symptoms matched more closely with lupus or RA rather than Crohn's or IBD. These are just based off of basic google searches of the disorders.

My questions are the following:

1. Do my symptoms sound consistent with Crohn's or some other IBD type illness to those of you who suffer from them?

2. What tests are needed by my GI to confirm a diagnosis? Are there any tests I should specifically request that may not be commonly offered? Are there any other specialists I should see on my own in addition to the GI doc?

3. IF I am diagnosed with Crohn's, what type of treatment can I expect?

4. What information should I plan to bring with me to my first GI appointment to make the most of the visit?

5. Do any of you keep a food diary or any other type of diary for your doctor? If so, do you have any recommendations of good templates to use for this purpose or can you tell me what kind of information that you track? (Wondering if I can pinpoint any triggers that make these episodes come on, or if they are truly random)

Thank you - I appreciate the advice.

Last edited by ktacserv; 04-24-2014 at 02:22 PM.
04-24-2014, 04:00 PM   #2
SupportiveMom
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First off I just want to send you my support in all you are going through. I hear you with the back to back pregnancy. My girls are 15 months apart.

It sounds like you are heading on the right path going to see a GI. The only way to really know you have IBD is colonoscopy &/or MRI/MRE. Blood work isn't enough and with some people with crohns the blood work doesn't show anything.

Though weight loss is very common not everyone has that as a symptom. Treatments very with the severity of the disease and the doctor. Some go right to the big drugs like Remicade and Humira, (the top down approach) while others will try other medications first. My best suggestion for you is to ask a lot of questions and bring someone to the appointment so you don't miss anything said.

It will be of help to make a food diary, but mostly for you. Our gi doesn't look at that stuff just asks if there have been new developments. We keep a poop journal (its an app called MyIBD) that helps to see the patterns in trips to the bathroom, general wellness, etc. Both iPhone & Android phones can use the app and its free.

Good luck and keep us posted. You are asking the right questions. Feel free to keep asking and read the forum. There is a ton of great info here!

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Mom of 16 yr. girl w/Indeter.Colitis Sep. 2012(age 11) Nov.2012 Crohn's Sep. 2014 Crohn's Colitis, UC Nov 2015, Crohn's Feb. 2016

Ileostomy surgery July 2015

Current Meds: None!
Previous Meds: Humira, Remicade, Methotrexate, Cipro, Flagyl, Zofran, Cortifoam, 5-ASA suppository, Questran, Mezavant, EEN (Peptamen Jr. 1.5) by NG tube, Antibiotic Cocktail (Vancomycin, Metronidazole & Doxycycline), Simponi, Prevacid, Imuran, prednisone
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04-24-2014, 05:05 PM   #3
theOcean
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I also have an anxiety disorder, and it's definitely something that feeds into my Crohn's. When I'm in a flare, anxiety will often trigger my Crohn's and I'll have to go rushing to the washroom. It's a pretty cyclical thing, unfortunately. Mine is often triggered by social situations, but when I would have panic attacks they would generally have no trigger at all. Just something that happens, which is also pretty standard.

As far as symptoms go, a lot of it rings as IBD so far. The ulcers in the mouth included, since with Crohn's it affects the whole GI tract. It would also explain why you get upper GI issues as well as lower GI, as was the case for me.

Not everyone experiences weight loss with Crohn's. It's a very individualized disease, so just because you're not checking off every symptom on a chart doesn't eliminate it as a possibility for you.

The first thing that I would recommend for you would be a referral to a GI to assess the problems that you're experiencing, because they'd be so much better equipped to prescribe you medication, especially if you feel that what you're currently on isn't cutting it for you. I would also highly suggest getting a colonoscopy done, since then they can examine you and do potential biopsies to diagnose you.

I was responding to this as I read since it sounded pretty urgent, so I just got to your list. To answer that:

1. Colonoscopy. Stool samples.
2. I would stick with just GI. I wouldn't even go to my GP about my IBD problems.
3. It depends on the severity. They will usually start you on a 5-ASA medication like Pentasa or Asacol. These are what I consider glorified anti-inflammatories, said somewhat bitterly because my illness was too severe for them to be effective at all. The progression from there is usually considering an immunosuppressant like Imuran, 6mp, or Methotrexate to slow your immune system so that your IBD calms down. After that, it's biologics, which are antibodies which specifically treat the IBD. They are more heavy-duty. There are also steroids, like prednisone, for just initially calming you down from flares.
4. Just notes of your history, your symptoms, and the tests you would like to request if they don't bring them up already.
5. I don't keep a food diary, but I've also figured out my food triggers by now.
__________________
Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
04-24-2014, 06:29 PM   #4
lells033
 
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Hello!

I feel as if we are in a similar situation. I have also been diagnosed with IBS, as my symptoms lasted with no real rhyme or reason and have been put on Fluoxetine (Prozac) to treat that. It has certainly helped with the urgency and has helped me to feel more in control of the situation, yet I still have "episodes" similar to what you describe - flu-like symptoms, nausea that just won't quit (I also take Zofran), joint aches, fever, all followed by intense abdominal pain that just seems to go away (mine is in the lower right quadrant, which has turned into a lot of appendicitis tests that were negative).

As I also do not have a diagnosis, I just wanted to offer some support as I have similar symptoms. I am now on my second GI, as my first treated whatever symptoms were in front of her and rarely could see me. I have been on medication from Entercort (steroids) to Methotrexate, but with no formal indication of Crohn's disease other than shockingly high inflammation markers for someone on anti-inflammatory drugs (130, 160 is Crohns) and bloody stools.

I hope you get some answers soon - I know how it feels to feel helpless.
04-24-2014, 08:05 PM   #5
ktacserv
 
Join Date: Apr 2014
Hello!

I feel as if we are in a similar situation. I have also been diagnosed with IBS, as my symptoms lasted with no real rhyme or reason and have been put on Fluoxetine (Prozac) to treat that. It has certainly helped with the urgency and has helped me to feel more in control of the situation, yet I still have "episodes" similar to what you describe - flu-like symptoms, nausea that just won't quit (I also take Zofran), joint aches, fever, all followed by intense abdominal pain that just seems to go away (mine is in the lower right quadrant, which has turned into a lot of appendicitis tests that were negative).

As I also do not have a diagnosis, I just wanted to offer some support as I have similar symptoms. I am now on my second GI, as my first treated whatever symptoms were in front of her and rarely could see me. I have been on medication from Entercort (steroids) to Methotrexate, but with no formal indication of Crohn's disease other than shockingly high inflammation markers for someone on anti-inflammatory drugs (130, 160 is Crohns) and bloody stools.

I hope you get some answers soon - I know how it feels to feel helpless.
I am shocked to find another human being on earth who has the same symptoms as me. I am disappointed for you that you had to find a new GI doctor. Did your first GI run any tests?

Have you already ruled out other diseases like Lupus?

I didn't mention it in my opening post but I actually have a very bad fear of doctors. It took me a long time to seek treatment for this and I am just now trying to get my courage up to follow through with the appointments and tests.

Thank you again to everyone for the replies. I'd love to hear from others too.

I started poking around a bit at other posts and cannot imagine some of what you and your children are dealing with. My situation pales in comparison to most of those I've read so far!

Sent from my SCH-I545
04-24-2014, 08:11 PM   #6
ktacserv
 
Join Date: Apr 2014
I am also frustrated with my primary care doctor a bit, because she told me she would no longer refill my zofran prescription. Her opinion was that I shouldn't need it as often as I do and that there's obviously something more serious wrong with me, and that we can't just keep treating the symptoms without finding out what is really wrong.

I understand that, but it worries me a lot because I really rely on the zofran right now to get me through during the flares. I can't keep missing work.

I am hoping that the GI doctor will keep giving it to me (or some other nausea med) because without it I am a mess.

I am severely emetophobic.

Sent from my SCH-I545
04-24-2014, 08:26 PM   #7
lells033
 
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My first GI ran just about every test (including two colonoscopies and 3 upper GI scopes and an impedence probe for GERD) she could think of and never gave a definitive answer, which I understood. However, we were not pleased with the fact that she seemed to forget who I was between very rare, hard to obtain appointments and her nurse practitioners always told me there was nothing wrong with me because they couldn't figure it out. We chose to leave to have a doctor that was more accessible.

As for your nausea medication, I hope you get to see a GI doctor soon - from my experience, even my first doctor was very understanding of my symptoms and try to make you comfortable, as there isn't always a straight answer.
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