# No one seems to really understand... (my long story)



## SweetObsolete (Dec 22, 2013)

Okay, *deep breath* hello, my name is Alexa, I am 24 years old, and here is the story of my chronic illness.  I’m not sure where to start, except that maybe I’ll just say I came from a troubled background; dysfunctional family and all that.  I developed anxiety and depression at some point (I suspect around the time I hit puberty).  I wasn’t actually diagnosed with any mental illness until several years later, when I decided to see a psychiatrist and therapist myself, because my emotional symptoms were becoming too difficult to tolerate on my own.  I was about 19 at this point.  I was diagnosed with moderate depression, dysthymia, generalized anxiety disorder, panic disorder, and social anxiety with possibly PTSD.  I don’t want to get into all the details, but let’s just say that certain relationships with people throughout my life, in addition to a genetic predisposition, allowed me to develop these disorders.  

Taking a step backwards, when I was 15 I came down with a very serious case of mononucleosis.  I was very sick for nearly a year and hospitalized for part of my illness, due to my inability to eat anything or keep down fluids.  Everything was so swollen I could barely breathe.  After I recovered from mono, I never really felt the same as before.  I was always tired and never woke up feeling refreshed.  My anxiety and depression worsened.  It seemed like I was constantly coming down with sinus infections and my immune system was shot.  

My first year of college (age 18) I began developing gastro intestinal symptoms.  I started feeling nauseous all the time and vomiting on occasion.  It was not the flu, and I knew that I wasn’t constantly getting food poisoning or anything.  I avoided going to the doctor, because I felt this was something I could live with at the time, it was only about once a month.  Eventually, it got to the point where I was constantly nauseous and vomiting at least 6 times a day.  It was difficult for me to eat anything beyond very bland bread or potatoes.  I often had severe headaches and migraines, which I did have to go to the emergency room for on occasion.  I also struggled with very painful periods.  I dropped a massive amount of weight (funny, one of the nurses asked me, “What’s your secret?!”) I was extremely fatigued all the time and it was difficult for me to accomplish anything.  I missed quite a few days of work.  They gave me a talk about it and I told them I would happily provide a doctor’s note, but they refused.  They didn’t officially “fire” me as much as they just told me they didn’t need workers anymore throughout the summer.  I missed many classes, had to drop out, retake them, or fail them.  My grade point average suffered.  Even with the help of disability services, I was unable to complete some of the tasks I needed to.  I saw GI doctors for my issues and they did many tests (endoscopy, gastric emptying, blood tests, CT scan, etc.)  They found nothing.  They discovered inflammation, an elevated SED rate, and some anemia.  They gave me some vitamins and diagnosed me with a “digestive motility disorder.”  They referred me to all kinds of specialists: OBGYN, Ear Nose and Throat, Internal Medicine, Neurologist, etc.  Nobody could really figure out what was wrong with me. 

 Somewhere along the line, someone gave me a prescription for Zofran and it must have helped, because my symptoms eventually began to become less severe.  I was tired of all of the tests and doctor appointments, so I gave up trying to find a diagnosis and decided to just try and manage my symptoms myself.  About 5 years had passed since my symptoms first started, when I went to my primary care physician for a routine physical she was astounded to find out that I was taking Zofran on a daily basis.  She renewed it but asked me to make an appointment with my gastro because apparently it is unusual to take Zofran every day.  I went to my gastro who said I should be taken off of it, because they do not know what the long term side effects of it are.  I was hesitant to do this, because in the past if I had every stopped taking Zofran for a couple days (maybe I didn’t have time to run to the pharmacy or something) I would develop diarrhea.  I assumed this was a side effect of withdrawing from Zofran or something, but my doctor told me it was not possible to withdraw from Zofran like that and suspected the diarrhea to be a symptom of something.  He ran some blood tests and ordered yet another gastric emptying.  I went off my Zofran and was told to call my doctor to see what happened.  Of course, I developed diarrhea.  Painful, watery, with oil like droplets in it and sometimes blood mixed in.  My gastro ordered a 3 day stool collection which showed elevated levels of fat, suggesting fat malabsorption.  Gastric emptying and blood tests came back normal and he decided “it was not a liver problem” and referred me to another gastro.  I was very confused, I never thought I had a liver problem!  Why had I been seeing this gastro for years who never bothered to tell me he only specialized in liver problems?  

While I waited to see the new gastro, I decided to take matters into my own hands and try going off of gluten for 2 months, to see if there was improvement in my symptoms.  During that time, I was still having diarrhea, but I believed my nausea and fatigue to be better.  I started back on it again by eating some pizza and the first thing that happened was I threw up.  I logged all of this and presented it to my doctor, along with a list of all of the symptoms I was having that I could possibly think of.  I had already had the blood test for celiac’s disease, and it came back negative, but I know that you can still have it with a negative test, or at least gluten sensitivity.  I thought maybe this was my problem.

I visited my new gastro and was surprised to learn he was a specialist in Crohn’s Disease and Ulcerative Colitis.  They asked me if my previous doctor suspected I had that and I told them I had no idea.  They ordered more blood tests, another endoscopy, and what I had been purposely avoiding for years: a colonoscopy.  My blood tests showed that I had elevated levels of CRP, which they told me indicated inflammation somewhere in the body, and was not very helpful.  I was terrified at the prospect of having a colonoscopy, but I knew that I had put it off for too long and should just get it over with.  So, I did it.  I was so nervous my heart rate was at 135 and they had to give me some anti-anxiety medication and fluids in addition to the regular sedation medication.  It was just as terrible as I could have imagined, maybe even worse.  I do not react like most people to the medication they give you to sedate you.  My experience was nothing like the experiences of other people who have described theirs to me.  I remember almost everything.  It was painful and awkward.  Everyone knows the prep is bad, but so was my colonoscopy.   Immediately afterwards, my doctor told me they found something that indicated Crohn’s disease and showed me pictures of things in my bowels which I did not understand.  They also explained to me that the inside of a normal person’s intestines is smooth and mine looked all lumpy, like cottage cheese.  They discovered I had a small hiatal hernia and GERD (with inflammation and damage to my esophagus).  They said they would evaluate the biopsies they had taken to confirm the Crohn’s diagnosis, and I had an appointment within the next few days to discuss the results with them.  They also ordered an MRE which I completed the next day.  I had to drink all sorts of nasty stuff and try not to throw it up.

The day finally came for my results.  They told me I did not have celiacs, but it was still possible I could have a gluten sensitivity, but that was certainly not all that was wrong with me.  All that damage couldn’t be caused by a gluten intolerance alone, they told me.  My doctor explained the biopsies came back negative for Crohn’s, but they may have just taken them from places that didn’t have the disease.  Apparently the MRE was also inconclusive, and I don’t know anything beyond that.  So I asked the doctor, straight up, does he have a diagnosis for me?  He said no.  Some things point to Crohn’s and some things do not.  I nearly started crying in the doctor’s office.  I do not want to have Crohn’s, but after years of being ill, I just wanted a diagnosis.  I am tired of people thinking my anxiety causes my symptoms and I wanted something solid to hold on to.  I want to know what I am fighting.  He gave me two options: 1. I could start on Crohn’s medication and call him in a month to let him know how I am doing.  2. I could do a pillcam to try to get a more clear diagnosis.  I was too disregulated at this time to be able to make the decision for myself, so I told him to just choose.  He started me on Pentasa about two weeks ago.  He also instructed me to be on a gluten free diet, and then once they figured out what the larger problem was and I was feeling better, I could start re-introducing gluten to see if that would have a negative effect.  He explained that there was a major problem which the gluten stuff would come secondary to, so they were taking out anything that could be causing symptoms.  I saw a dietician since I am a vegetarian and had to be on a low fiber and gluten free diet in addition to that, leaving me very little things to eat.  She was very helpful.  

So I’ve been gluten free and on Pentasa for about 2 weeks now and I am not feeling any better.  Still having diarrhea 2-8 times a day, still having nausea and vomiting, and still very fatigued.  I have other random symptoms like canker sores, headaches, small itchy bumps, back pain, eye pain, etc. The weirdest part is even though it seems everything I eat immediately comes out, one way or the other, I have gained a lot of weight.  I now weight more than I ever have in my life and it is extremely frustrating.  I have been very carefully tracking everything I eat and all of the symptoms I have throughout the day, but I really feel helpless at this point.  I think I am going to call my gastro tomorrow and request an appointment or something because waiting for a month with no diagnosis is killing me.  I will do the pillcam if that will help diagnose, I don’t even care.  They can do whatever to me I just want a damn diagnosis!  I am very afraid that I will become so ill again that it will interfere with my job and I am applying to graduate school right now, which I really want to be able to handle.  I also play roller derby and my illness has already been keeping me from going to practice and staying active.  My social life is suffering because my friends, boyfriend, and family just do not seem to understand what I am going through.  They are healthy and can’t understand why tasks that are seemingly so simple, like going to the mall, are so difficult for me.  

I am sorry this is probably the longest thing you have ever read (and it still doesn’t include everything!), I just needed to tell somebody who would possibly understand and feel like I am not alone in the world.  I apologize, because I know many of you have dealt with far worse and I probably shouldn’t be complaining, but this is my reality.  If you actually took the time to read all of it, I truly appreciate it <3


----------



## BowelMeOver (Dec 22, 2013)

Welcome to the forum, Alexa, and thank you for sharing your painful story with us. It seems you have been through so much throughout your life, and I am hoping that you get that much needed diagnosis, and a successful treatment plan to get you back to feeling good once again.

Please keep us posted on how things develop for you. While I have no advice to offer you regarding your symptoms, there are many people here that have been where you are and can help you along. Best wishes to you going forward.


----------



## SweetObsolete (Dec 22, 2013)

BowelMeOver said:


> Welcome to the forum, Alexa, and thank you for sharing your painful story with us. It seems you have been through so much throughout your life, and I am hoping that you get that much needed diagnosis, and a successful treatment plan to get you back to feeling good once again.
> 
> Please keep us posted on how things develop for you. While I have no advice to offer you regarding your symptoms, there are many people here that have been where you are and can help you along. Best wishes to you going forward.


Thank you so much for your kind words   It was difficult to write, but I feel a catharsis afterwards.  I will keep you posted with any updates.


----------



## ***Lisa*** (Dec 22, 2013)

Hi Alexa - So sorry you are still without a diagnosis. The not knowing is the worst. I hope things change for the better for you soon! Lisa


----------



## SweetObsolete (Dec 22, 2013)

***Lisa*** said:


> Hi Alexa - So sorry you are still without a diagnosis. The not knowing is the worst. I hope things change for the better for you soon! Lisa


Thank you!  Hopefully I'll have a diagnosis soon...


----------



## Rocking on (Dec 23, 2013)

Hello Sweet:

I am sorry if I missed it, but I see you are in Minneapolis.  I am in Alexandria.  Have you tried a diagnosis at the Mayo?  

Your health issues sound a lot like mine did when it all  started, except I went thirty years before the shit hit the fan (sorry, couldn't resist).  You haven't said much about your treatment, but I'd think a round of prednisone would be a good place to start.  Not that pred is fun, but if your issues are from inflammation you should see some relief on prednisone and it is a good place to start.

It makes me angry when people have painful colonoscopies.  There is just no need for that.  The Mayo puts me OUT with proponol, which is one of the reasons I go there.  If the Mayo can't figure you out, I doubt anywhere can.  I hope u feel better soon and stay warm!


----------



## SweetObsolete (Dec 23, 2013)

Rocking on said:


> Hello Sweet:
> 
> I am sorry if I missed it, but I see you are in Minneapolis.  I am in Alexandria.  Have you tried a diagnosis at the Mayo?
> 
> ...


Hello, fellow Minnesotan!

Wow 30 years!  That is just terrible, I am sorry   Thankfully it hasn't been that long for me.  Only about 6 years ha.

I have indeed thought about going to the Mayo, but I haven't been referred there, so I guess I just go to whoever I get referred to if that makes sense?  I guess I would feel kinda bad going to the Mayo because my doctor is really nice and its supposed to be a specialist in Crohn's and everything... But perhaps it is time I just ask for a referral to the Mayo...

My current gastro put me on pentasa for Crohn's and then just prilosec before I eat with a low fiber diet to help things heal.  I'd prefer to avoid prednisone unless I really have to :/  Unless a doctor persuades me its the best thing to do... I'm worried about the moon face stuff. As stated before, I already have problems with my weight and I don't need a puffy face on top of that. But vanity shouldn't come before health...

They told me they gave me as much sedation as they possibly could without killing me... Maybe it was a different kind of medication, I don't know.

Anyways, thanks for all your advice and support.  I think I might ask my doctor for a referral to Mayo...


----------



## SweetObsolete (Dec 23, 2013)

Called my doctor today and I'm having the pillcam done the day after Christmas (which means I get to fast all day on Christmas and go to work yay...)  Can't wait to get it over with and hopefully have some answers.


----------



## Rocking on (Dec 23, 2013)

I havent had Crohns for 30 years, i got it at age 30 and really in my prime.  I am now 46.

You may have a great local doctor for Crohns,  but diagnosis is where the mayo really excels.  You may have more going on than you know.  It's not just the gastro docs, but everyone including hematologists and radiologists.

A ten day course of prednisone shouldn't give you moon pie.  It's not a fun drug to be on, but if your issues are inflammation based it will provide relief.  If it doesn't then maybe your issue are bacterial or viral.  

I really hope the pill cam works for you.  I dont know why they have never done that with me, but I suppose it's because they cant take tissue samples with a pill cam.  So sorry u have to starve on xmas,  but on the other hand I am sure a lot of us will be lamenting our eating decisions that day, lol!


----------



## SweetObsolete (Dec 23, 2013)

Rocking on said:


> I havent had Crohns for 30 years, i got it at age 30 and really in my prime.  I am now 46.
> 
> You may have a great local doctor for Crohns,  but diagnosis is where the mayo really excels.  You may have more going on than you know.  It's not just the gastro docs, but everyone including hematologists and radiologists.
> 
> ...


Oh good, sorry I misunderstood, 30 years would be a long time to be suffering without an answer ha.

Good point about the mayo... If I don't get a diagnosis from the pill cam then I will get a referral for there, for sure!


----------



## ryansbronco (Dec 23, 2013)

A second look is always a good thing. I was misdiagnosed for years. Luck had it that I crashed at an ER that was out of network. They had me diagnosed in one vist. Just try to smile with all that is going on.  Keeping yourself happy will help you a bunch. Have you talked to your friends about your condition?  Whenever you need to vent well be here.


----------



## SweetObsolete (Dec 23, 2013)

ryansbronco said:


> A second look is always a good thing. I was misdiagnosed for years. Luck had it that I crashed at an ER that was out of network. They had me diagnosed in one vist. Just try to smile with all that is going on.  Keeping yourself happy will help you a bunch. Have you talked to your friends about your condition?  Whenever you need to vent well be here.


Wow it seems I'm not the only one who goes for years without being diagnosed.  That's both comforting and sad.  

I am trying my best to practice good self care   Like I said, I do suffer from anxiety and depression though, so its not easy...  I have a therapist to help with that luckily and she's actually the one who suggested I go to a Crohn's support forum! I have talked to friends, and they don't really seem to know what to say, because they have no experience with it and get awkward about it.  I do have one friend with chronic illness though and I'm lucky to have her to exchange medical stories with.  Thanks very much for the venting offer, it is appreciated!


----------



## Chickadee (Dec 23, 2013)

SweetObsolete-- I'm sorry you're going through all of this! I, also, have some complicated medical problems, some diagnosed, some not. It definitely sounds like you have some sort of systemic inflammatory process going on, with the elevated Sed rate level, CRP, etc. While the doctors narrow that down, have you tried cholestyramine to help with the diarrhea? It won't "fix" the systemic issues, but for me, it does help with the diarrhea.


----------



## SweetObsolete (Dec 23, 2013)

Chickadee said:


> SweetObsolete-- I'm sorry you're going through all of this! I, also, have some complicated medical problems, some diagnosed, some not. It definitely sounds like you have some sort of systemic inflammatory process going on, with the elevated Sed rate level, CRP, etc. While the doctors narrow that down, have you tried cholestyramine to help with the diarrhea? It won't "fix" the systemic issues, but for me, it does help with the diarrhea.


I am sorry to hear of your medical issues as well   I haven't tried that medication, but apparently they're putting me on an anti-spasmodic med, HYOSCYAMINE, to help with cramps.  Anyone have experience with this?


----------



## Chickadee (Dec 24, 2013)

I haven't had great experiences with anti-spasmodics, but doctors love to prescribe them so presumably the meds help some patients. If you give it a try and find it doesn't work, consider asking the doctor about cholestyramine as a stop-gap measure to help with the diarrhea. (I also find it helps some with cramping, just by slowing things down.) It's a powder that must be mixed with liquid, though, and because it doesn't taste very good, there's a chance you wouldn't be able to tolerate it with your nausea. 

Good luck with your pillcam! I hope that it provides more specific answers so that you can get targeted treatment.


----------



## SweetObsolete (Dec 24, 2013)

Chickadee said:


> I haven't had great experiences with anti-spasmodics, but doctors love to prescribe them so presumably the meds help some patients. If you give it a try and find it doesn't work, consider asking the doctor about cholestyramine as a stop-gap measure to help with the diarrhea. (I also find it helps some with cramping, just by slowing things down.) It's a powder that must be mixed with liquid, though, and because it doesn't taste very good, there's a chance you wouldn't be able to tolerate it with your nausea.
> 
> Good luck with your pillcam! I hope that it provides more specific answers so that you can get targeted treatment.


Well, I'll give the anti-spasmodics a try and see how that goes.  Yeah I have a hard time drinking anything so that might be a bit rough :/  I'm willing to at least try anything though.  We'll see what happens.  

Thanks for the luck, I need it!  I'm curious though, if its not Crohn's, what else could it be really?  I know that no one is a doctor here but it seems all my symptoms are pointing to Crohn's and I just wonder what else it could possibly be.


----------



## Rocking on (Dec 24, 2013)

I also tried an anti-spaz (like that name!).  Was a pill i would let dissolve under my tongue.  As far as i could tell it did nothing.  No negative effects from it though.


----------



## Justin1982 (Dec 25, 2013)

SweetObsolete:

Most of us aren't doctors, but quite a few of us are active "sufferers".  It took me 20 years to get a diagnosis of Crohn's.  For the first time in my life, I am not sick EVERY DAY.  I am still sick around 60% of the time, but not every waking moment.   So I a happy to have some relief.

I have loads of complications often associated with Crohn's disease.  Anemia on and off, More Kidney Stones than countable, Low Potassium, Low Vitamin D, and Severe Weight Loss, and Severe Depression. I hate being sick = /.

So let me put this into perspective.  Finding the right doctor is key - I saw Dozens of "quacks".  Try Cleveland or Mayo Clinic.  Doctors at Cleveland Clinic are wonderful.  I live 4 hours away, and for the level of care, have made over 20 trips since April (when diagnosed).  My health has been THAT BAD.

To quote my doctor, not every medication works for every person.  I'm on Entocort EC, but he indicated if I'm not happy or better, we can try others.  There are numerous Crohn's Drugs.  Ask for another.  Entocort has few side effects.

How is your blood work? Potassium? Vitamin D?  - We know you have Anemia.    There are anti Diarrheal drugs.  I was given Lomotil, but have yet to try.  Feeling better is a matter of trial and error.  

Good Luck.


----------



## Justin1982 (Dec 25, 2013)

Rocking on said:


> Hello Sweet:
> 
> I am sorry if I missed it, but I see you are in Minneapolis.  I am in Alexandria.  Have you tried a diagnosis at the Mayo?
> 
> ...


Cleveland Clinic ranks as #2 in the for Digestive Disease.  #2 for Kidney & Urology.  Mayo Clinic in Rochester I am sure has top notch marks, too.

I think we're in agreement SweetObsolete needs to be seen at a University Hospital.  Doctors hold their own opinions in High Esteem.  Kid you not, I get Entocort EC samples off a local GI, and he wouldn't believe Cleveland's Diagnosis for the longest time.  

My last visit, he relented and said I guess they're a University Hospital, so we'll let them assume control of treatment.  They must have some ideas.   Prior visit, your results aren't conclusive so they're clearly off base.  However, I'll give you samples anyway.

Enough said there =).  Finding the right doctors means life and death.


----------



## SweetObsolete (Dec 26, 2013)

Justin1982, 20 years, that's awful!  I'm so sorry you have been suffering for so long 

So far, I really like my current doctor.  He's very nice and seems very knowledgeable.  I got referred to him because he is an expert at IBD.  Good bedside manner is not everything but I certainly value it.  I am going to a University hospital.  My doc teaches part time and has residents and all that.

But anyways... I still plan to go to Mayo clinic if the pillcam is inconclusive, but I do want to give this doc a chance.  He is loads better than my first GI.  I've got the pillcam inside me right now by the way!  I took it this morning and thankfully have not noticed any weird side effects or anything.  I actually think its kind of neat, the little camera was flashing LED lights, fun 

So yesterday I ended up in urgent care with severe back pain.  They said it didn't look like kidneys and there was some blood in my urine but not enough to indicate a bladder infection.  Most likely it was muscle pain.  It could be an injury I sustained from roller derby but it just came on so suddenly and strongly.  I couldn't sleep and couldn't lay on my side or back.  I really didn't want to go in to urgent care but the pain was excruciating.  Anyone else happen to have problems with back pain?

Edit: I forgot to add, in response to the question, I do not know what my blood levels are at right now!  In the past, I've had low iron, low vitamin D, etc.  I should probably get them done again soon to see where they're at, I know my dietitian was interested in doing this.  I'm seeing her next Thursday, so I'll request it then.


----------



## Justin1982 (Dec 27, 2013)

Thanks SweetObsolete.

Back pain and blood in Urine are indicative of kidney stones.   Ask your doctor for a KUB.  Calcium Oxalate stones will show up (most common in Crohns), if indeed the cause.


----------



## SweetObsolete (Dec 29, 2013)

I think it is actually muscle pain, because it doesn't hurt where my kidneys are located, but much lower.  It's better now anyway, off and on.  I'll bring it up to my actual doctor when I see him, not just an urgent care doc, and see if he thinks the KUB is necessary. 

It seems I passed the pillcam the day I took it, because the little light stopped flashing.  Now I get to anxiously await results which I will get sometime within this week.  Fingers crossed everyone that this helps me get a proper diagnosis


----------



## SweetObsolete (Jan 10, 2014)

Update:
My pillcam results aren't 100% back yet, but I've been harassing my doctor's office for answers because it is taking forever to get these results!  So far it seems I don't have any inflammation in my small intestine, or evidence of disease.  But they told me this could change, because they haven't looked at it carefully enough yet.  

But, there is an online thing where I can read my test results, and here is what my endoscopy said:
LA Grade A (one or more mucosal breaks less than 5 mm, not extending 
between tops of 2 mucosal folds) esophagitis with no bleeding was 
found 36 cm from the incisors.
A small hiatus hernia was present.
Patchy mildly erythematous mucosa without bleeding was found in the 
entire examined stomach. Biopsies were taken with a cold forceps for 
Helicobacter pylori testing.
The examined duodenum was normal. Biopsies were taken with a cold 
forceps for evaluation of celiac disease.
Impression: - LA Grade A reflux esophagitis.
- Hiatus hernia.
- Erythematous mucosa in the stomach. Biopsied.
- Normal examined duodenum. Biopsied.
- Reflux esophagitis and mild gastropathy, no clear 
evidence of sprue but bx obtained.

And my colonoscopy:
The perianal and digital rectal examinations were normal. Pertinent 
negatives include normal sphincter tone.
The colon (entire examined portion) appeared normal. Biopsies were 
taken with a cold forceps for histology.
A localized area of moderately congested, erythematous, eroded and 
friable (with contact bleeding) mucosa was found at the ileocecal 
valve. Biopsies were taken with a cold forceps for histology.
Segmental inflammation, moderate in severity and characterized by 
congestion (edema), erosions, erythema and friability was found in 
the terminal ileum. Biopsies were taken with a cold forceps for 
histology. extended from ICV to 10-12cm proximally, then normal TI.
Impression: - The entire examined colon is normal. Biopsied.
- Congested, erythematous, eroded and friable (with 
contact bleeding) mucosa at the ileocecal valve. 
Biopsied.
- Crohn's disease with ileitis. Biopsied.

I then got a note that my biopsies were negative for anything, except for an increase in lymph tissue.

So, moving forward, they are taking me off of my pentasa as soon as I am finished with my current bottle (which is probably a good thing cos the next dose was going to cost $642!)  the anti-spasmoidal didn't seem to be doing much, so I'm gonna stop taking that.  He told me to start taking zofran as needed for nausea again and immodium for the diarrhea. They are sending me a kit in the mail with a bunch of things to blow into, for a breath test.  They also want to test my blood and urine for more things. 

I am feeling pretty bummed as I just want an accurate diagnosis


----------



## Chickadee (Jan 10, 2014)

Can you get a second opinion on your biopsies?


----------



## SweetObsolete (Jan 10, 2014)

Chickadee said:


> Can you get a second opinion on your biopsies?


I guess I assumed biopsies would be pretty clear cut?  But I am seeing another GI actually on the 21st.  Its just my old one and I still have an appointment with him.


----------



## Chickadee (Jan 10, 2014)

Actually, I don't think that's the case. Pathologists can miss things or interpret them in different ways. Since your original colonoscopy report indicated Crohn's disease, I think it might be worth having another pathologist take a look.


----------



## SweetObsolete (Jan 10, 2014)

How could I go about getting another pathologist to look at it?  I don't know where the biopsies are or anything and would my doctor be offended if I ask him?


----------



## ryansbronco (Jan 11, 2014)

SweetObsolete said:


> How could I go about getting another pathologist to look at it?  I don't know where the biopsies are or anything and would my doctor be offended if I ask him?


A second opinion is always welcome. I would talk to your doc first. I doubt hed say no. If for some odd reason he/she dose, you can have your records sent to any doctor that your insurance covers.


----------



## SweetObsolete (Jan 13, 2014)

Okay, I will definitely ask my doctor about a second opinon on the biopsies.  It can't hurt I suppose.

Random question... I have an appointment coming up with my old GI (the liver dude) that was made months ago.  He's the one who referred me to the current one.  Do you guys think it is even worth going back to him?  Probably not I'm guessing, since he is the one who referred me away.


----------



## Chickadee (Jan 13, 2014)

I think it really depends on if you found that GI to be helpful.

As far as the biopsies, wherever you decide to have them reviewed can request that the biopsies be transferred to them. You'll have to fill out a form.


----------



## SweetObsolete (Jan 13, 2014)

He wasn't really that helpful, to be honest.  I guess I was just wondering if another opinion would be a good thing?  But I guess since I've already seen him its not like its a new opinion or anything.  I just have some new test results now since I've last seen him.  I mean I know its my choice, I'm just wondering what other people would do in this situation I guess ha.


----------



## Chickadee (Jan 13, 2014)

If you can go to Mayo (not too far and accepts your insurance), I'd recommend it.


----------



## SweetObsolete (Jan 22, 2014)

I've got an appointment with my GI in a couple of weeks, I will bring up the option of going to Mayo then and see if I can get a referral. My grandma worked at the Mayo and said you get in a lot quicker with a referral.  

A few blood and/or urine tests have come back.  My CRP is higher than last time and weirdly my insulin is high.  It says normal range is 1.9 - 23.0 uIU/ml and mine is 70.2.  What the heck?  I have no idea what that means but I'll be asking my doctor.


----------



## SweetObsolete (Feb 4, 2014)

Had my doctor's appointment today.  Everything came back inconclusive.  Per everyone's advice, I've asked him to have another pathologist read the biopsies and I'm going to the Mayo clinic.  My GI seemed to think going there was a good idea as well.  So I'm gonna call and make an appointment tomorrow.  I really hope this works out, I'm feeling pretty hopeless after this appointment


----------



## nikimazur (Feb 4, 2014)

Don't be hopeless! It took 2 years, five colonoscopy/endoscopies, and a gazillion other tests to have a definite diagnosis for me. I know some people have waited 20-30 years and have heard nothing. My results, started like yours... Inconclusive. One test would would be indicative of Crohn's then another that a different doctor ordered that was negative. At this point, if not for asking for second, third or even fourth opinions I probably wouldn't have a diagnosis. It's hard to keep keeping on, but don't feel hopeless! I know it's hard (history of TBI/mental health issues) and that some days are treacherous but hang in there!


----------



## SweetObsolete (Feb 4, 2014)

nikimazur said:


> Don't be hopeless! It took 2 years, five colonoscopy/endoscopies, and a gazillion other tests to have a definite diagnosis for me. I know some people have waited 20-30 years and have heard nothing. My results, started like yours... Inconclusive. One test would would be indicative of Crohn's then another that a different doctor ordered that was negative. At this point, if not for asking for second, third or even fourth opinions I probably wouldn't have a diagnosis. It's hard to keep keeping on, but don't feel hopeless! I know it's hard (history of TBI/mental health issues) and that some days are treacherous but hang in there!


Thanks.  I know it takes many people a long time to get diagnosed, but its just hard to remember that when the doctor's are looking at you and saying "You're asking all the right questions, but we don't have the answers."  I have to keep remembering I'm not alone though... Sorry to hear about your TBI.  That's got to be difficult to have along with Crohn's yuck.  I have anxiety and depression and I know that causes some doctors to judge me for it.


----------



## SweetObsolete (Feb 19, 2014)

Welp, I just got back from my first appointment at the Mayo clinic today.  After looking over some of my test results they diagnosed me with a "functional bowel disorder."  I was diagnosed with this initially and that doctor told me it was a "wastebasket diagnosis."  I mentioned my concerns to the doctor at the Mayo clinic and she assured me that wasn't the case and that my physical problems were real.  She said I have extra sensitive nerves due to my anxiety.  I am really unhappy with this diagnosis.  She told me that this was the best possible diagnosis to get, but I disagree.  They are referring me to a cognitive behavioral therapist who teaches breathing exercises specific to people with GI issues.  I am very skeptical that this will solve all of my physical problems (especially things like fevers, dizziness, randomly vomiting without any anxiety preceding it, BMs several times a day, etc.)  I have done breathing exercises before.  I like them for my anxiety but I don't think they'll help much with physical issues... The funny thing is my mental health is actually pretty good right now, so why would I be physically worse?

They are also referring me to an endocrinologist about the unexplained weight gain and my painful periods that last up to/over a month sometimes.  Checking my adrenal glands and whatnot too.  

Oh I also found out I have costochondritis (inflammation of the cartilage between my ribcage and my sternum) which hurts terribly when anything pushes lightly on my chest.  Yay... 

I mean I am a mental health counselor and so believe me, I know that mental health is important, but I just don't see how my anxiety could cause all these physical symptoms that are decreasing my quality of life.  I'm really frustrated and upset


----------



## Rocking on (Feb 19, 2014)

Sweet maybe I can add another perspective for you.  Pain is pain, and that is a damn fact, no matter what is causing it.  But you have been looked at now by several docs, including some from the best hospital in the world.  The fact is, Crohn's has kicked my ass for 16 years, and getting the right diagnosis hasn't really helped me one damn bit.  It took a long, long time for me to just accept the fact that even though the doctors gave me a lot of nice shiny labels, they still really couldn't do too much to help me. 

In some ways I really, really wish doctors would look at me and not know exactly what was wrong, because then I might have some hope that it would pass and I would eventually get better.  Instead, i now only view doctors as emergency helpers. The Mayo hospital has nursed me through some tough ones.  They also helped me find a clot in my leg and a cancerous spot on my kidney that was treated right away that may have led to even bigger problems.  Thank your stars they didn't find more wrong with you.  But in all honesty, they haven't been able to do anything to really make my Crohns better.

So, i had to take that on myself.  If one more person tells me yoga will help, I swear i will strangle them!  i have developed my own meditative techniques and learned what foods make things worse, but people are so unique we really have to find our own ways with these disorders.

I feel for you kiddo.  i know how much it sucks when other people think you can "relax" your way out of these pains.  It's frustrating and in some ways condescending.  But, I think the docs not finding what you are looking for is actually quite hopeful for you.


----------



## SweetObsolete (Feb 19, 2014)

Rocking on, you're right, of course.  I know that Crohn's is a bad diagnosis (the doctor today referred to it as "sinister" ha ha,) and it would be silly to actually want it.  I guess I really just want something to latch on to and claim, if that makes any sense.

I will try to look at it from your perspective though.  Perhaps I can hope that this means I have potential to get better eventually, but right now I'm feeling like I'm going to be sick forever with no real treatments... 

I will try to be more positive though!


----------



## Rocking on (Feb 19, 2014)

I hear ya completely.  I guess it was comforting to finally be able to tell people OK this is exactly what is wrong with me.  Since people know I have Crohns, many people have approached me over the years concerned about IBD issues they were having.  Every one of those people got better, the lucky bastards.  So you should still have a lot of hope.


----------



## UnXmas (Feb 21, 2014)

SweetObsolete said:


> Welp, I just got back from my first appointment at the Mayo clinic today.  After looking over some of my test results they diagnosed me with a "functional bowel disorder."  I was diagnosed with this initially and that doctor told me it was a "wastebasket diagnosis."  I mentioned my concerns to the doctor at the Mayo clinic and she assured me that wasn't the case and that my physical problems were real.  She said I have extra sensitive nerves due to my anxiety.  I am really unhappy with this diagnosis.  She told me that this was the best possible diagnosis to get, but I disagree.  They are referring me to a cognitive behavioral therapist who teaches breathing exercises specific to people with GI issues.  I am very skeptical that this will solve all of my physical problems (especially things like fevers, dizziness, randomly vomiting without any anxiety preceding it, BMs several times a day, etc.)  I have done breathing exercises before.  I like them for my anxiety but I don't think they'll help much with physical issues... The funny thing is my mental health is actually pretty good right now, so why would I be physically worse?
> 
> They are also referring me to an endocrinologist about the unexplained weight gain and my painful periods that last up to/over a month sometimes.  Checking my adrenal glands and whatnot too.
> 
> ...


I'm sorry I haven't read all of this thread yet, but I wanted to reply. I absolutely agree with you about this being an upsetting diagnosis to receive.

I have never understood why negative test results are assumed to mean that physical symptoms must originate from a psychiatric problem, rather than negative test results simply meaning that the tests done so far have been inadequate. Do doctors do every available test before they claim it's all in the patient's head? If in the future more advanced tests continue to be developed, isn't it likely that more diseases will be identifiable than there are at present, just as more diseases are identifiable now than there were 10, 20, 100 years ago?

It made no sense when doctors threw these diagnoses at me, because it was so obvious to me that there was no correlation between my mood or stress levels and my physical symptoms. I did get diagnosed with physical illnesses in the end, but only when I got very, very sick. And even after being diagnosed, there have been times when doctors have _still_ resorted to the stress/mental health labels when they feel the severity of my symptoms does not match the severity of disease revealed by test results.

I know that if you have had genuine mental illness doctors are liable to use that as evidence that physical symptoms have a psychological base, but I think if doctors are determined to see symptoms as psychological, they will find a way to do so. I had no history of mental illness, but doctors assumed I had anorexia when my digestive problems caused me to lose weight, and thought I had Irritable Bowel Syndrome caused by stress because I fit the image of a high-achieving, white middle-class young female that is the stereotype of these conditions. I'd had a pretty much perfect life up until I became sick, and certainly no mental health issues, and yet doctors still found a way to make it out to be all in my head.

I'm really sorry I can't be of any help to you. Please don't feel you have to believe what doctors tell you if you feel that they are wrong. If you are very lucky you may be able to find a good doctor who will try to help you despite negative test results. 

I'm going to go back and read some of your posts more thoroughly, but I just wanted to tell you that you are far from on your own in experiencing the problems that come from this kind of diagnosis.


----------



## Justin1982 (Feb 21, 2014)

Rocking on said:


> Sweet maybe I can add another perspective for you.  Pain is pain, and that is a damn fact, no matter what is causing it.  But you have been looked at now by several docs, including some from the best hospital in the world.  The fact is, Crohn's has kicked my ass for 16 years, and getting the right diagnosis hasn't really helped me one damn bit.  It took a long, long time for me to just accept the fact that even though the doctors gave me a lot of nice shiny labels, they still really couldn't do too much to help me.
> 
> In some ways I really, really wish doctors would look at me and not know exactly what was wrong, because then I might have some hope that it would pass and I would eventually get better.  Instead, i now only view doctors as emergency helpers. The Mayo hospital has nursed me through some tough ones.  They also helped me find a clot in my leg and a cancerous spot on my kidney that was treated right away that may have led to even bigger problems.  Thank your stars they didn't find more wrong with you.  But in all honesty, they haven't been able to do anything to really make my Crohns better.
> 
> ...


Crohn's is like being told you're bleeding to death and the best doctors can do is apply bandages.  Sometimes, the bleeding stops on occasion, and other instances the blood gushes.    20 years of misdiagnosis and I'm a medical trainwreck.  I'm seen at Cleveland Clinic, and a year later, doctors are STILL trying to get my health under control.

Kidneys are loaded with kidney stones. Started out with probably 20-30 1/4th to 1/2 inch stones in left Kidney.  Right Kidney has a few more.  Right Kidney also severely undersized from infection or past stones.

Doctor says stones are Oxalate and a direct result of Crohns.

GI has me on Entocort for 10 months now.  Highest Dosage.  I've gained about 15 pounds and haven't been "AS BAD". I'm 5'3 and dropped from 230 to 110.  About 125-126.  Meaning I'm able to crawl out of bed instead of sleeping every waking moment from extreme fatigue.  Still got plenty bouts of not feeling well, but at least I'm mobile and tired.

Suffice to say, Crohn's diagnosis might as well me lifetime of hell.  Doesn't fix our problem.  Just gives us a name and reason we're sick.


----------



## carrollco (Feb 21, 2014)

I really need to add something here. 30 years ago I dropped 40 pounds in 3 months. I was horribly sick. The docs decided I had IBS, panic disorder, and depression. Over 1-2 years my symptoms improved and the panic/anxiety/diarrhea disappeared. I assumed that these episodes that would appear out of nowhere were all in my head. Fast forward to 10 years ago. The bouts became more frequent. I didn't tell anyone because it was all in my head. At first it was once a month the once a week then all the time. Still, I didn't tell anyone. Then the blood started. First a little and I blew that off as hemmies. Then it was all the time and I was so sick. I womaned up and made an appt. By the time I had  colonoscopy I was full of ulcers. That was 4 years ago. I have failed all meds except Remicade which has been heaven sent. Maybe, had I been not so embarrassed and more assertive Crohn's might have been caught earlier saving me a ton of pain. My point is, keep at it. It is my thought that IBS may be a precursor to Crohn's, though I am not a doc. I made my life hell because I believed my doctor. Do not do what I did.


----------



## Justin1982 (Feb 21, 2014)

carrollco said:


> I really need to add something here. 30 years ago I dropped 40 pounds in 3 months. I was horribly sick. The docs decided I had IBS, panic disorder, and depression. Over 1-2 years my symptoms improved and the panic/anxiety/diarrhea disappeared. I assumed that these episodes that would appear out of nowhere were all in my head. Fast forward to 10 years ago. The bouts became more frequent. I didn't tell anyone because it was all in my head. At first it was once a month the once a week then all the time. Still, I didn't tell anyone. Then the blood started. First a little and I blew that off as hemmies. Then it was all the time and I was so sick. I womaned up and made an appt. By the time I had  colonoscopy I was full of ulcers. That was 4 years ago. I have failed all meds except Remicade which has been heaven sent. Maybe, had I been not so embarrassed and more assertive Crohn's might have been caught earlier saving me a ton of pain. My point is, keep at it. It is my thought that IBS may be a precursor to Crohn's, though I am not a doc. I made my life hell because I believed my doctor. Do not do what I did.


Crohn's and Ulcerative Colitis are similar but not one in the same. Both are Inflammatory Bowel Diseases, but the symptoms are different.  If you have Ulcers, then I assume your diagnosis is Ulcerative Colitis?

Also, IBS is a blanket term for we don't know what's wrong.  There's no signs or symptoms so we give the problem an indiscreet name.  IBS doesn't cause damage to the colon.  No Ulcers (Colitis), Thickening of the Wall (Crohn's), Granulomas, Fistulas, Strictures, etc.

So while IBS "sucks", there's no damage.  While most here "Had IBS" we were incorrectly diagnosed. IBD and IBS are completely different beasts. We never had IBS, just incompetent doctors.


----------



## carrollco (Feb 21, 2014)

No. I have Crohn's disease in a severe form. My point being was that perhaps if I had been more assertive with the docs Crohn's would have been discovered much sooner, but then again who knows.


----------



## UnXmas (Feb 21, 2014)

Hi again, I have read the thread now more fully. I wanted to let you know that I have had similar experiences in addition to receiving the psychological labels. In addition to having medical conditions that were eventually diagnosed, I also have an incredibly rare disorder that affects every part of my body. There was just no way doctors could diagnose it. I would never have come across it searching the web. There are some unique medical conditions out there, that just can't be diagnosed. That's what I was eventually told, when I was referred to world-wide experts in London. I just have my own, most likely genetic, abnormality. What's so hard is that when unable to diagnose me, so many doctors accused me of every mental illness going, from Munchausen's to anorexia to stress-related IBS. (And they do view mental illness as something people should be accused of, as if even genuine mental illness were a crime and not illness.)

If you ever come to a point where you just can't stand going through fruitless tests and appointments anymore, it may help you emotionally to consider whether you are like me and have an unprecedented condition that is all your own. Though I hope it won't lead to as serious consequences as mine has.


I think there is value in having a diagnosis. It legitimises our suffering somehow and makes doctors take us seriously in a way that many simply don't when they talk about IBS and other psychological disorders. For me, however, this legitimacy did not come from my diagnosis so much as from the development of serious complications, even though there's been a lot of confusion over which of my conditions has led to which complication.

While there is value in getting diagnosed, if the process is getting too stressful and results are not forth-coming, I think it can help to take a break from it and try to accept being undiagnosed or being a medical mystery. Just remember that, whatever doctors may tell you, that does not mean your suffering is any less real, and it doesn't mean it's related to your mental state.


----------



## carrollco (Feb 21, 2014)

That was perfectly said UnXmas.


----------



## SweetObsolete (Feb 21, 2014)

Thanks everyone for your support.  I want to make it clear, I do not _want IBD or Crohn's.  I just want a clear answer.  Also, they did not diagnose me with IBS.  They diagnosed me with a functional bowel disorder.  It sounds like IBS but they didn't actually use that phrasing.  

UnXmas, I'm sorry you had to go through all of this as well.  I actually do have anxiety and depression diagnoses, but the funny thing is I've been working really hard at getting better with that and I am a MILLION times better than I used to be.  (I was just going through some old tumblr posts and I can't believe how bad I used to be.)  My life is pretty great now.  So the thing is, why when my anxiety is better and my life is better is my physical illness worse?  I will just be happily chilling on the couch, snuggling my dogs and watching Netflix and then blam out of nowhere I have to puke!  I mentioned that to them and they kinda just brushed it off and said that my body is just wired that way now, so it doesn't matter if I'm not feeling anxious, it can still happen.  If that's true, I don't understand how the breathing exercises will help...  I also asked them why my scopes showed the mucosal thickening consistent with Crohn's if its just this functional disorder.  They said that my body is just being damaged from all of the trauma the vomiting and BMs are causing. 

carrollco, thanks for your input too.  I've had 3 separate opinions now so I am advocating for myself.  I think like UnXmas said, it would be good for me to take a little break from GI docs.  I will be doing the endocrinology stuff and if nothing comes of that I'm going to stop getting tested for a while, unless things get even worse than they are now.

I guess one other thing that sucks about no clear diagnosis is trying to explain it to people.  Everyone knows I'm sick and they keep asking me if they've figured out what's wrong yet.  A clear diagnosis would give me something to hang my hat on.

One thing I have a question about... is Crohn's a disease that develops over time?  Because when I had my first scope nothing showed up, and now some things have shown up.  In a few more years could even more things show up?  Because it sounds like many of you have went through the no diagnosis stuff for a while, was that the course of your disease developing?_


----------



## UnXmas (Feb 22, 2014)

> One thing I have a question about... is Crohn's a disease that develops over time? Because when I had my first scope nothing showed up, and now some things have shown up. In a few more years could even more things show up? Because it sounds like many of you have went through the no diagnosis stuff for a while, was that the course of your disease developing?


Crohn's can develop at any age, so it's perfectly possible for a test to show no signs of it at one point, and then a later test to show it's now present. It can also increase in severity and appear in different parts of the digestive tract. It can also go the other way, and remission can occur spontaneously, without the use of meds or surgery.

However, as far as I know the symptoms of Crohn's do not manifest before the disease onset. I.e. if a person experiences symptoms at age 20, has all the tests done and finds there is absolutely no sign of Crohn's, then at age 30 has tests repeated which now show Crohn's, the symptoms that were present at age 20 cannot be attributed to Crohn's. Crohn's can only be diagnosed via test results, not by symptoms, so Crohn's cannot officially be declared to be present regardless of the symptoms being experienced, even if the person later goes on to develop Crohn's as shown by tests. I hope that made sense and I think I've got it correct, though if anyone knows it to be different, please say so. 

That said, I have read a few posts here by people who experienced symptoms and had negative test results who then went on to have the same tests turn out positive later, and I've read posts by people who have symptoms which do not correlate well with the severity of Crohn's demonstrated on tests. For example, tests may show a person to be in remission, yet they continue to experience symptoms. This is all just anecdotal though, there's no official evidence that Crohn's symptoms regularly occur before disease onset. (As far as I know.)



> I want to make it clear, I do not _want IBD or Crohn's. I just want a clear answer. Also, they did not diagnose me with IBS. They diagnosed me with a functional bowel disorder. It sounds like IBS but they didn't actually use that phrasing._


_

I think you posted in a way that made that understandable. I certainly relate to wanting to have a disease, which is how I felt during my years of misdiagnosis. You feel awful anyway, it's ruining your life anyway, it's far better to have the fact that you are sick validated than to continue to suffer without a diagnosis. Ideally, of course you want to be healthy, but since you're not, it would be very much easier if test results reflected this! It's completely understandable that you should feel this way.

I think IBS is sometimes referred to as one type of motility disorder. I think that maybe they used the term motility disorder rather than IBS with you  because your symptoms include vomiting and reflux, which are not part of IBS. IBS is typically seen as causing only diarrhoea, constipation and/or bloating and stomach pain. I've seen conditions such as GERD (reflux) and gastroparesis (delayed stomach emptying) categorised as motility disorders. (I myself have both of these.) Since you seem unfortunate enough to have aspects of many of these disorders, perhaps they felt motility disorder was a better fit. I'm just speculating though of course._


----------



## SweetObsolete (Feb 23, 2014)

Thank you UnXmas, that all makes sense.  I asked that question because yeah I have seen quite a few people say they've taken several colonoscopies and whatnot to get diagnosed.  And since my first colonoscopy showed the mucosal thickening but the biopsies were benign I was curious if perhaps the disease were still developing.  But I understand what you're saying. 

I see what you're saying about the motility disorder as well.  I've got GERD, a small hernia, vomiting, diarrhea, rarely constipation, stomach cramps, etc. so I suppose they just use a blanket term for all that stuff... 

Anyways, they are looking at changing my meds around and maybe that will help as well.  They think I should try an amytriptiline and I'm really hoping that won't screw up my mood since I'm on a different anti-depressant at the moment :/  I hope you all won't mind me sticking around these forums even though I'm not an official crohnie


----------



## Chickadee (Feb 23, 2014)

SweetObsolete-- I know this is the opposite of what others have said, but I think that sounds like more than a functional disorder. Maybe they haven't been able to pinpoint the cause, but I wouldn't give up on them ever finding a cause.  Also, I know that a lot of people who have Crohn's disease are unfortunately not helped tremendously by medication, but some are. For instance, my cousin was diagnosed, went into remission with his first medication and has been well for 3+ years. That doesn't mean he won't have trouble later on, but for now, he's quite healthy. I also have a great uncle with Crohn's who is 95. 

Anyways, the amytriptiline might help you. I hope it does. Often, the dose is so low (not therapeutic level for depression) that you might be able to stay on your antidepressant. 

Did you have the pathologists at Mayo take a second look at your biopsies?


----------



## SweetObsolete (Feb 23, 2014)

Chickadee said:


> SweetObsolete-- I know this is the opposite of what others have said, but I think that sounds like more than a functional disorder. Maybe they haven't been able to pinpoint the cause, but I wouldn't give up on them ever finding a cause.  Also, I know that a lot of people who have Crohn's disease are unfortunately not helped tremendously by medication, but some are. For instance, my cousin was diagnosed, went into remission with his first medication and has been well for 3+ years. That doesn't mean he won't have trouble later on, but for now, he's quite healthy. I also have a great uncle with Crohn's who is 95.
> 
> Anyways, the amytriptiline might help you. I hope it does. Often, the dose is so low (not therapeutic level for depression) that you might be able to stay on your antidepressant.
> 
> Did you have the pathologists at Mayo take a second look at your biopsies?


Thanks Chickadee.  

Yes I did have them take a look at my biopsies and they said the same thing.  No sign of Crohns, just an increase in lymph tissue, presumably caused by the trauma of constantly going to the bathroom.

I also have heard of people who have been able to live normal lives and go into remission with medications.  Then there are those at the opposite end of the spectrum who are constantly having health problems.  *shrugs* seems like Crohn's is different from person to person.

Oh and I still haven't received any results for new blood tests they took at Mayo, so maybe that will show something different.


----------



## UnXmas (Feb 24, 2014)

SweetObsolete said:


> T
> Anyways, they are looking at changing my meds around and maybe that will help as well.  They think I should try an amytriptiline and I'm really hoping that won't screw up my mood since I'm on a different anti-depressant at the moment :/  I hope you all won't mind me sticking around these forums even though I'm not an official crohnie


I love Amitriptyline! Check out our support group for it here: http://www.crohnsforum.com/showthread.php?t=47926

It helps me with my emotions so much. Before I used to be overwhelmed by negative moods, but on Ami, I still feel both positive and negative emotions, but I can view the negatives with clarity and act appropriately.

It almost guarantees me a good nights sleep too (the reason I was prescribed it in the first place was because prednisone gave me insomnia).

It's a very unpredictable med, with a lot of potential benefits and a lot of potential side-effects.

Are you taking it for the stomach problems?

It's no problem you staying on the forum even if you don't have a Crohhn's diagnosis; there are many undiagnosed people here.


----------



## SweetObsolete (Feb 24, 2014)

UnXmas said:


> I love Amitriptyline! Check out our support group for it here: http://www.crohnsforum.com/showthread.php?t=47926
> 
> It helps me with my emotions so much. Before I used to be overwhelmed by negative moods, but on Ami, I still feel both positive and negative emotions, but I can view the negatives with clarity and act appropriately.
> 
> ...


Oh there is an amitryptiline support group?  Awesome!  I will be taking it for stomach problems, yes, since I'm already currently doing well with my mental state.  They wanted me to go through my psych though to get it prescribed, to make sure it doesn't effect my other meds, and I'm seeing her tonight so fingers crossed it goes well.  Not looking forward to any potential side effects but it would be fabulous if it helped with insomnia!  I take melatonin for that and its going pretty well but I still wake up sometimes throughout the night, so an extra kick wouldn't hurt


----------



## UnXmas (Feb 24, 2014)

SweetObsolete said:


> Oh there is an amitryptiline support group?  Awesome!  I will be taking it for stomach problems, yes, since I'm already currently doing well with my mental state.  They wanted me to go through my psych though to get it prescribed, to make sure it doesn't effect my other meds, and I'm seeing her tonight so fingers crossed it goes well.  Not looking forward to any potential side effects but it would be fabulous if it helped with insomnia!  I take melatonin for that and its going pretty well but I still wake up sometimes throughout the night, so an extra kick wouldn't hurt


A lot of people find Amitriptyline makes them a bit more sleepy than they bargained for.  But it's often very dose-dependent, and the amount that's prescribed to help with stomach problems or pain is usually a very low dose (around 10 - 30mg) so the side effects shouldn't be too bad for you. I take it at a high dose; the doses it's used as an anti-depressant are anywhere from 100 - 300mg, and then it really does knock you out.


----------



## SweetObsolete (Mar 19, 2014)

More updates!

My GI doctor from the Mayo Clinic called me yesterday to say they had just now received my test results from my clinic here!  I was under the impression that they had most all of them already and the other ones they would get a couple days later.   Nope, a couple months later... 

She said the results from my colonoscopy and MRE were more abnormal than she had thought and now suspects Crohn's disease again.  Also my CRP went up a few more points or mg or whatever, so whatever is inflamed in my body is more inflamed.  

So, guess what I get to do?  Have another colonoscopy   She told me it was my choice, but that she highly recommended it to see if things have progressed since my last one and so they could take some more biopsies and hopefully get a more clear answer.  She said I could either get one soon or wait to see if I get worse and get one then.  Umm I've been sick for years already I do not want to wait and see how bad it can get ha ha.  She said if it is Crohn's the sooner they can start treating it, the better but if its not she doesn't want to start treating it without the new colonoscopy since (as you all know) the meds can have some nasty side effects.  I called to schedule and they need to call me back but I'm hoping to get in this Friday to get it over with.  Especially since I already have an appointment in Rochester on Thursday, so I could just get it done the next day and not have to drive so far.

As far as the amitryptiline goes, I think it is helping with stomach cramps somewhat.  I still get them, but it seems like it might be less than before now.


----------



## Chickadee (Mar 20, 2014)

SweetObsolete, I'm sorry you have to have yet another colonoscopy, but I would think this is kind of good news. You might have a diagnosis and get the right treatment.


----------



## SweetObsolete (Mar 21, 2014)

Chickadee, yes it is kind of good news.  IF it helps me get a more accurate diagnosis then I'm happy to do it.  I'm just hoping this one won't be as painful as the last one is all.  I have it scheduled for April 4th so I will be updating again after that.

Oh I just saw the breathing specialist yesterday.  I am still skeptical because when I first tried it I felt like my pain was worse, because I had my hand on my belly and it was just drawing attention to it.  But, she said it sometimes takes a half hour for it to work.  So, I'll continue to try it more....

Thanks everyone who is following this thread


----------



## SweetObsolete (Apr 3, 2014)

I'm doing the prep now ugh.  I truly applaud those of you who have had to go through this many times, its miserable.  Cannot wait to get this over with and see if I can get a decent diagnosis!


----------



## SweetObsolete (Dec 15, 2014)

Hey all...

So its been a year since I joined and I guess I just wanted to post a quick update/vent.

I did the second colonoscopy at the Mayo clinic and they said it was normal, no signs of Crohn's.  They stuck with the diagnosis of ibs and gastric motility disorder.  Upped my dose of amitriptyline and it has helped LOADS with the cramps honestly.  Well, most days at least.  Also, I'm hardly vomiting at all anymore, which is great.  Still go through bouts where I have bad diarrhea and stomach cramps that are debilitating, but not quite as often.

Biggest mystery then was why was my CRP abnormal.  They keep checking it and it keeps going up.  Went to an endocrinologist, internal medicine, even a biofeedback specialist at mayo clinic.  They diagnosed me with fibromyalgia and chronic fatigue syndrome and told me to take some classes on how to manage it.  I do not have time for that.  So I start noticing more and more aches and pains along with my daily headaches (that I just sort of thought were normal for some reason?)  My general doc sent me to a rheumatologist. 

Rheumatologist sent in tests for lupus and other rheumatoid conditions and still the only abnormal test was the CRP.  She said okay fibromyalgia still, have some gabapentin.  That did nothing.

3 months later, I see her again and she's put me on PREDNISONE now.  I still feel achey but the headaches are much better.  Anyways, she diagnosed me with arthritis but not officially I guess until the 15 day course of prednisone is done and I get my CRP checked again.  If it goes down, then its arthritis.  If not, I don't know what.  But if it is arthritis I have to be put on Plaquenil, which could cause eye problems.  After researching that a bit I gathered it would have to be rheumatoid arthritis, which I thought she ruled out, so I'm a bit confused, and possibly facing a different auto immune disorder now.

So yeah.  Only like 10 more days left on the prednisone, then I can get my CRP checked, and then wait to see how long that takes to get in, and then wait for my doctor to get back at me.  Seems like I'm pretty much always waiting... ugh.

Well, if you've made it this far, thanks for reading.  Just felt like venting again and I know folks here can sure appreciate these trials and tribulations.


----------

