Back to square one...

[Everly]

Tired of trying...

Hello everyone.

Recently I had an endoscopy to check for any ulcers or other abnormalities, and they checked biopsies for Celiac disease. But, just when I was beginning to think they had found something, the test came back negative. I am so stressed out...I just feel like giving up. My mom really can't afford more tests and it's just wearing on both of us...

With my last bloodwork, I had inflammation markers in my body, and my high lipase level had lowered.

My current symptoms I've been having lately are:
-A 'pinching' pain in my left side, sometimes in the right side, sometimes in the middle of my abdomen, and sometimes right where my heart is.
-Have pale colored stools a lot, mucus in them almost daily.
-Alternative constipation/diarrhea. Sometimes feel a frequent urge, like I'm going to have diarrhea and it turns out to just be gas...
-Hot flashes as of today, along with tightness in my throat.
-Have had shortness of breath since the beginning of the year.
-ALWAYS tired. Never sleeping enough or feeling completely rested.

If you have any other questions, feel free to ask. I'm just trying to figure out what's wrong with me. Is there any other things they should test for in my blood?
I just really need some support and ideas...

 

[LaLaNapa]

Hi Everly:

It can be really frustrating - and you'll feel like a guinea pig - while doctors try to figure things out. Are you seeing a regular MD or a GI specialist? I'm just wondering why they focused on an upper GI endo rather than deal with the "downstream" area that is also causing so many troubles for you. Or was it not just upper GI?

I ask because I went through tons of blood work and it never found anything very remarkable - though when I finally found a GI I trusted (and focused on IBD) and had an MRE and colonoscopy that's when the inflammation was found (and the MRE was able to map it out in both small and large intestine). It's active currently only in 12 cm of my TI but the huge symptom for me is extreme tiredness - which went on for about 2-3 years before I realized it came from the poor nutrition (I guess) brought on by active CD.

I had trouble breathing, too, but it turned out to be asthma. (Another test. Yeah.)

Oh, and have you had your blood tested for Vit B and D levels? That might indicate any deficiencies.

Don't give up!

LaLa

 

[dannysmom]

Hi. We are here to support you. This is so very frustrating. Some of the tests my son had are listed below ... his main symptoms are abdominal pain, diarrhea, & fatique ... he also gets gerd, hot flashes, headaches, sore throat, eye issues and joint pain.

- Blood tests: CBC, CMP, ESR, CRP, Pancreatic enzymes, Prometheus IBD panel, Vit D, B12, Iron, Celiac, Mono, and a slew of rheumatologist tests including ANA

- Scopes: Endoscopy & Colonoscopy with many biopsies

- Imaging: SBFT, MRE, sonogram, pillcam

 

[UnXmas]

I understand how frustrating this is. It took years for me to get diagnosed, and I felt the same way about wanting tests to be positive, because knowing what was wrong was what mattered - tests that showed I was normal weren't helpful. Have you had a colonoscopy as well?

So many things could cause your symptoms. Have you been checked for gynaecological problems? Sometimes that can effect the bowels too, and you mention hot flushes which are often hormonal.

I learned there is no end of tests they can perform when you have vague symptoms like stomach pain and tiredness. The good side of this is that it means there are still many tests you've yet to have, so there are many more possibilities of getting answers and treatment. The bad part is that it's a long process. The endoscopy hasn't been a complete waste, as it will have ruled out many things, which is also progress.

Do you have a consultant in charge of your care? The really important thing is to have a good doctor who can identify exactly which tests are most relevant to you.

 

[Cat-a-Tonic]

Everly, I'm sorry to hear it and I know how frustrating it is to be told everything looks "normal". I also know how expensive medical testing can be! Have your mother check with the hospital or clinic, they should offer some sort of financial aid program. Even if it sounds like you won't qualify, try applying for it anyway. I didn't meet the criteria for my hospital's financial aid but I applied anyway and I was approved! I had racked up about $6000 in medical debt and they wiped it all out.

As for having upper abdominal pain and pale stools, have they checked your gallbladder? Gallbladder issues can cause pale stools, although I don't believe the pain would jump around like you described. The other thing I know that can cause pale stools is gastritis (inflammation of the stomach). Did they see any inflammation on the endoscopy or the biopsies? Gastritis can come and go, but personally I get pale stools when it flares up for me. Gastritis is usually associated with another illness though so I am guessing that's probably not your main issue. Do you have acid reflux/GERD? My GERD can sometimes cause a gastritis flare-up.

Hang in there. I know it's exhausting and frustrating - but don't give up looking for answers. Keep fighting! We're all here to support you. Feel free to vent or ask more questions.

 

[Gculk]

Do you have anemia?

If not, get your B12 and vitamin D checked. Could be causes of your fatigue.

Do you have sore throat as well, or just tightness? I clench my jaw when I'm in pain and it causes my throat to get tight.

 

[Everly]

Thanks everyone for the responses!

At first I started off seeing a regular MD, and she referred me to a GI specialist. He decided for me to go ahead with the endoscopy and get more bloodwork to see if anything was inflamed, and there was inflammation markers.

They did an endoscopy to see if I had any uclers or hernia's, and everything was normal. When I was younger, a doctor thought I had acid reflux problems, but...nothing showed up during the endoscopy. It's a bit odd, as I'm not sure where they got the ideas from?

A few years ago in the mornings I would get these HORRIBLE pains in my stomach that would cause me to fall to the floor in agony. The doctor gave me anti-acids and they helped with the pain. It could have been from stress, though. I went through a hard time at that age. I used to always get horrible periods as well, I'd be throwing up from the pain and nearly be screaming in the nurses office and missing school up to two days each month. I was put on birth control, and I no longer feel the pains I did before.

Thanks, Cat-a-Tonic for the financial aid idea! I'll for sure talk to my MD about it.

About a year ago, I did have anemia, but I started taking iron and it helped, as my blood level is back to normal range.

Now that I look back at all of this...I've never really felt healthy as a kid.

 

[UnXmas]

They did an endoscopy to see if I had any uclers or hernia's, and everything was normal. When I was younger, a doctor thought I had acid reflux problems, but...nothing showed up during the endoscopy. It's a bit odd, as I'm not sure where they got the ideas from?

A few years ago in the mornings I would get these HORRIBLE pains in my stomach that would cause me to fall to the floor in agony. The doctor gave me anti-acids and they helped with the pain. It could have been from stress, though. I went through a hard time at that age. I used to always get horrible periods as well, I'd be throwing up from the pain and nearly be screaming in the nurses office and missing school up to two days each month. I was put on birth control, and I no longer feel the pains I did before.

I think you can have acid reflux with or without actual inflammation, or at least that the inflammation can come and go. So you might have had reflux symptoms at some point without it necessarily showing signs on an endoscopy now. I'm not completely sure of this, but I do remember something along those lines when I was diagonsed with reflux. They said the opposite is true as well - that you can have gastritis (inflamed stomach) from reflux without having any reflux symptoms.

 

[Gculk]

Do you have the numbers for anemia? Many times 'normal' means 'low normal' which means 'low'. If it's well within normal ranges, get B12 and D checked. They're other major causes of fatigue, and if B12 is down, it could point to some malabsorbtion.

If the inflammation markers were there, you've got something going on. Also try and see if you can get in for a colonoscopy, or barium meal. Would be able to see stuff that they didn't on endoscopy. I'm going to assume that your endoscopy was from the top down, and not both ends?

 

[723crossroads]

Hi Everly,
I hope you soon find out the cause of your symptoms. It sure sounds like mine and I have crohn's. Well was diagnosed by colonoscopy in 2011 by one GI and then went to a new one last yr. Was on entocort for 2 months. Went into remission and then after 6 months or so, symptoms came back and have been since. My new Gastro said that ulcers don't always mean Crohn's. Could be from using nsaids long periods of time. I told him last time I don't take them because of my kidney problems sonce 2009. So now he wants me to have another colonoscopy next week by him at his clinic. This will be 3 in 5 yrs. which ticks me off. But he is afraid to put me on a biologic (Humira) because I had kidney cancer. I am afraid to take one because of that too.
So, why not put me on something else? I don't understand him sometimes though I know he is good.I sure hope you find your answers hon! Let us know.:heart:

 

[petparent]

Hello everyone.

Recently I had an endoscopy to check for any ulcers or other abnormalities, and they checked biopsies for Celiac disease. But, just when I was beginning to think they had found something, the test came back negative. I am so stressed out...I just feel like giving up. My mom really can't afford more tests and it's just wearing on both of us...

With my last bloodwork, I had inflammation markers in my body, and my high lipase level had lowered.

My current symptoms I've been having lately are:
-A 'pinching' pain in my left side, sometimes in the right side, sometimes in the middle of my abdomen, and sometimes right where my heart is.
-Have pale colored stools a lot, mucus in them almost daily.
-Alternative constipation/diarrhea. Sometimes feel a frequent urge, like I'm going to have diarrhea and it turns out to just be gas...
-Hot flashes as of today, along with tightness in my throat.
-Have had shortness of breath since the beginning of the year.
-ALWAYS tired. Never sleeping enough or feeling completely rested.

If you have any other questions, feel free to ask. I'm just trying to figure out what's wrong with me. Is there any other things they should test for in my blood?
I just really need some support and ideas...

Hi Everly,
I am new to the Crohn's Disease Forum. I have Colitis and possibly Crohn's Disease. I got sick nine years ago. I had a bleeding ulcer and was rushed to the hospital where I received four pints of blood. I was also diagnosed with Gall Bladder sludge. I have never felt right and ended up in the hospital last year with another bleeding ulcer and acid reflux disease. This January, I ended up in the hospital again but this time with colitis. I have taken every kind of blood test and I have the markers for Crohn's. My CED rate is quite high. I have rectal leakage which is awful and itching. I will be going for
more tests. I tell you not to give up because we are all in this together.
Petparent

 

[723crossroads]

I'm so glad Everly that you have all these kind people here to give you really great advice. You need it when you are having all these symptoms. Listen to them, they are giving great advice. I am here if you ever need to talk. OK?

 

[Everly]

Hi Everly,
I hope you soon find out the cause of your symptoms. It sure sounds like mine and I have crohn's. Well was diagnosed by colonoscopy in 2011 by one GI and then went to a new one last yr. Was on entocort for 2 months. Went into remission and then after 6 months or so, symptoms came back and have been since. My new Gastro said that ulcers don't always mean Crohn's. Could be from using nsaids long periods of time. I told him last time I don't take them because of my kidney problems sonce 2009. So now he wants me to have another colonoscopy next week by him at his clinic. This will be 3 in 5 yrs. which ticks me off. But he is afraid to put me on a biologic (Humira) because I had kidney cancer. I am afraid to take one because of that too.
So, why not put me on something else? I don't understand him sometimes though I know he is good.I sure hope you find your answers hon! Let us know.:heart:

Thank you so much. :hug: This forum really gives me the confidence I need to continue fighting for answers, as I'm really sick of this stabbing/pinching pain in my left side, always feeling tired, and always feeling unwell. I hope everything turns out well on your side, too! Stay strong! :heart:

 

[Everly]

Do you have the numbers for anemia? Many times 'normal' means 'low normal' which means 'low'. If it's well within normal ranges, get B12 and D checked. They're other major causes of fatigue, and if B12 is down, it could point to some malabsorbtion.

If the inflammation markers were there, you've got something going on. Also try and see if you can get in for a colonoscopy, or barium meal. Would be able to see stuff that they didn't on endoscopy. I'm going to assume that your endoscopy was from the top down, and not both ends?

If I find the paper with my results on it, I'll post them here to see if it's within normal or over. My doctor advised I have my B12 and D checked as well, so I went in for a blood test today and hopefully I'll get some results there.

Barium...not a good taste. Lol. If the bloodwork shows anything(or nothing), a colonoscopy might be my next step. Yes, my endoscopy didn't include the lower end.

 

[Everly]

Hi Everly,
I am new to the Crohn's Disease Forum. I have Colitis and possibly Crohn's Disease. I got sick nine years ago. I had a bleeding ulcer and was rushed to the hospital where I received four pints of blood. I was also diagnosed with Gall Bladder sludge. I have never felt right and ended up in the hospital last year with another bleeding ulcer and acid reflux disease. This January, I ended up in the hospital again but this time with colitis. I have taken every kind of blood test and I have the markers for Crohn's. My CED rate is quite high. I have rectal leakage which is awful and itching. I will be going for
more tests. I tell you not to give up because we are all in this together.
Petparent

I am so sorry to hear this. We're all here to support you, so don't ever feel alone! :hug: I hope you get a diagnosis soon so you can start your treatment and begin to feel better! Stay strong!

 

[Everly]

Update:

I got a call back from my doctor today and my vitamin D level was a tiny bit low, but everything else was normal.

I'm still feeling sick daily, frequent urge to have bowel movements, never feeling fully rested, constant hunger pains, tenderness in my abdominal area right near my bellybutton, stabbing pains an inch or so away to the left of my bellybutton, constipation, changes in bowel movements, light colored stools and daily mucus....

It's been about a month and a half now, and I'm really starting to lose hope. I've been crying the past hour and just feel like giving up on it all. It's stressing me and my parents out, and I never got any medication for the pains...

I'm just really losing faith, and feel like my doctor doesn't even seem to believe me. She wants me tested for a pinched nerve...and I know it's not a pinched nerve...

Please, I really, really need support and I know I can't go through this on my own. It's my senior year of highschool and I'm denying every invitation to hang out because I'm always so tired and feeling sick...I just want everything to get better. And right now, I feel like I'm entertaining false hopes...

 

[723crossroads]

Everly, go see your PCP and make sure they inderstand how much pain you are in. I did and they gave me some oxycodone. They don't have the tylenol. Just codeine. I used to get sick if I took one but now am used to them. They do help. I get the same pains as you. It is strange how they can be in the lower back too. Do you get them at the top of your butt area, really sharp sometimes.I go for a colonoscopy on Thurs. because I switched Gi's and he has never done one on me yet. But had one in 2011 when they found crohn's in ileum and colon. I get constipated and then I get D for weeks sometimes. Dr. gave me Cholestyramine to use when I have D. It helps so much.
If you are not being helped, you need to get a good Dr.near a city where they are better. Don't be dispaired hon, you have to fight this and fight for your self, ok? We are here to help you and listen, ok? Hang tough!!!:heart:

 

[petparent]

Hi Everly,
Some of your symptoms sound a lot like mine. Did you see another GI Doctor? Did you ever go to the website vitals.com or ratemd's.com? I have researched many doctors. I have read reviews and if my GI Doctor does not come up with an answer soon, then I will change. I get stabbing pains in my belly button but I have gallstones and sludge. I get crazy symptons also and I feel pressure in the rectum all the time. I have hemorrhoids. I tried the ointment calmoseptine which helps a little bit but I will take any kind of relief. I have loads of mucos with terrible burning. The only thing that keeps me going is my job. I don't think about what is bothering me that much. I do know an excellent GI Doctor who is in New York City. He has helped many people with GI problems. Let me know how you are doing.
Petparent

 

[723crossroads]

Praying we all feel better soon!:heart:

 

[Everly]

Another update:

Hello again.

I recently learned that a cousin in my mom's side of the family, AND a cousin in my dad's side of the family has crohn's disease. I really think I should be checked to be safe, but I'm so worried about the prep.

When I did the prep for a CT-scan, I could only stomach one out of the two bottles of barium. Because I was so close to puking. I'm just scared, because I'm already always so dehydrated and I can't drink much of any liquid without feeling sick...

 

[petparent]

Everly,
There is a new kind of prep. They give you a mixture of Ducolax, Miralax and Gatorade. It will not make you sick. I will be taking a colonoscopy at the beginning of April. Ask your GI doctor about that mixture. If I can find the paper, I can write the prep as it is written on the paper they gave me. Let me know. Praying for us all.

 

[Everly]

Everly,
There is a new kind of prep. They give you a mixture of Ducolax, Miralax and Gatorade. It will not make you sick. I will be taking a colonoscopy at the beginning of April. Ask your GI doctor about that mixture. If I can find the paper, I can write the prep as it is written on the paper they gave me. Let me know. Praying for us all.

Thank you, I'll for sure ask my GI doctor about that option. And that would be greatly appreciated, as I'll probably need as much information as I can. Thanks again! Good luck with your colonoscopy! :hug:

 

[dannysmom]

What you need to drink for the scope is VERY different than the barrium. The scope drinks are clear and thin and made to clean you out .... sort of opposite the thick barrium. But ... prep is not easy either ... but well worth the testing. Good luck!

 

[Everly]

Hey everyone!

So last night, I got my blood tests back for autoimmune diseases, and I tested negative for lupus and arthritis, but, my ANA testing was a high positive.

Last night I also had been running to the bathroom for thirty minutes, having diarrhea that smelt very metallic...it worried me a bit.

So I went to school today and had to come home early, because my stomach was in great pain and whenever I ate or drank anything, I'd have a feeling I'd have to run to the bathroom. Sometimes I feel like I REALLY need to go and that I'll have diarrhea, but it turns out to be a lot of gas.

I have an appointment with my GI doctor on the 14th, and he'll probably set up a colonoscopy for me.

I'm still in pain tonight, and I have NO idea how I'm going to get through the next week...I just feel horrible.

 

[723crossroads]

Hey everyone!

So last night, I got my blood tests back for autoimmune diseases, and I tested negative for lupus and arthritis, but, my ANA testing was a high positive.

Last night I also had been running to the bathroom for thirty minutes, having diarrhea that smelt very metallic...it worried me a bit.

So I went to school today and had to come home early, because my stomach was in great pain and whenever I ate or drank anything, I'd have a feeling I'd have to run to the bathroom. Sometimes I feel like I REALLY need to go and that I'll have diarrhea, but it turns out to be a lot of gas.

I have an appointment with my GI doctor on the 14th, and he'll probably set up a colonoscopy for me.

I'm still in pain tonight, and I have NO idea how I'm going to get through the next week...I just feel horrible.

Just a suggestion, start taking some good probiotics now. Everyday. The more good bacteria in your gut, the better I feel. I take acidophylis capsules everyday (the recommened dosage) for the horrible gas and stomach discomfort. When I don't take it, it's worse. Hope you find out soon what is causing your problems. Feel better!!!!!

 

[Everly]

Just a suggestion, start taking some good probiotics now. Everyday. The more good bacteria in your gut, the better I feel. I take acidophylis capsules everyday (the recommened dosage) for the horrible gas and stomach discomfort. When I don't take it, it's worse. Hope you find out soon what is causing your problems. Feel better!!!!!

Thank you for the suggestion I'll for sure consider it. Is it prescription, or could I possibly buy it over the counter?
Thank you for your advice and support. I really appreciate it!

 

[723crossroads]

Thank you for the suggestion I'll for sure consider it. Is it prescription, or could I possibly buy it over the counter?
Thank you for your advice and support. I really appreciate it!

You can find probiotics in any store with the vitamins. Look for a good quality one with a high number of active cultures. I billion at least.

 

[dannysmom]

How high was your ANA? (I am just curious ... both of my son's had a low positive 160 ... but it was dismissed, and subsequent tests have been normal.)
Good luck next week. You can do it ... you have suffered so much and hopefully the test can help you get proper treatment

 

[Everly]

How high was your ANA? (I am just curious ... both of my son's had a low positive 160 ... but it was dismissed, and subsequent tests have been normal.)
Good luck next week. You can do it ... you have suffered so much and hopefully the test can help you get proper treatment

I'm not sure, my doctor never told me the number...I don't have a very good doctor, and I am probably going to look for another one.
They tested me for lupus and everything, but all of those were negative. There was also an inflammation marker in my blood, so I'm really not sure what to think.
Thank you so much, I really appreciate your support. :hug:

 

[Everly]

Hi all!

I saw my GI doctor today, and he scheduled a colonoscopy for the 22nd...I'm going to be prepping on the 21st, using the trilyte method...a bit worried, but I'm sure I'll get through it! Just have to be brave.

 

[723crossroads]

Hi all!

I saw my GI doctor today, and he scheduled a colonoscopy for the 22nd...I'm going to be prepping on the 21st, using the trilyte method...a bit worried, but I'm sure I'll get through it! Just have to be brave.

So glad he is using twilight!!!! You will be fine hon! Keep me posted ok?:hug:

 

[Everly]

So glad he is using twilight!!!! You will be fine hon! Keep me posted ok?:hug:

Thank you! :hug: I will! Thanks for following my posts!

 

[Gculk]

Best of luck on the prep, best of anaestesia on the day of! Hopefully they get you some answers - either that or you feel better, I'm sure we'd all rather that one.

 

[Everly]

Thank you! My prep is tomorrow and I'm a bit nervous. I got everything I needed, and am going to be drinking Gatorade/miralax. :smile: I've heard a ton of great responses from the miralax prep and I'm just crossing my fingers that it'll work!

 

[723crossroads]

Thank you! My prep is tomorrow and I'm a bit nervous. I got everything I needed, and am going to be drinking Gatorade/miralax. :smile: I've heard a ton of great responses from the miralax prep and I'm just crossing my fingers that it'll work!

It will work hon!!! It did for me 3 times!Make sure you drink it all though and eat popsicles(No red or orange or purple. ) in between or broth. The chicken broth was great for me.

 

[Everly]

I've started eating my orange jello for breakfast. How delicious! Then I have yellow Popsicles for lunch, and chicken broth for dinner. I got it all planned! :lol2:

 

[juljul]

Hi Everly,
Just a quick comment about the ANA. It can go up and down in a short space of time. Mine had done so. Went to within the normal range when I was having a brief period of remission from having been sky high a few months earlier. Now I am back to square one and they haven't retested but I suspect it is even higher because I hurt all over and am just about hanging in there myself waiting to see the Rheumy again and being disbelieved about my GI symptoms basically. You would think they would take me more seriously having been diagnosed with a rheumatological chronic inflammatory auto-immune disease ....nope. I have been told by the new registrar that there is nothing wrong with my GI system basically - based on i) a normal sigmoidoscopy (no biopsies taken) and ii) an upper endoscopy (biopsies taken) of my mouth to stomach. But I have swallowing issues, possible gastritis, upper GI pains, pale stools, floating stools, nausea, faltering appetite, all food tastes bitter sometimes, anorectal pain, etc. I know they are wrong. They haven't done enough tests. I won't let them fob me off. I will just keep asking for a new Dr until I find someone who is willing to listen.


If you are not happy with any of your doctors, get a new one. Just don't let bad Drs who can't take a challenge get you down. It is our health that they are playing around with. We have to keep reminding ourselves that we are worthy. In my opinion, in my experience they don't want challenging cases. It is tough. All difficulty has to come to pass - is in my belief system. Keeping patience can get tough but with family, friends and other support it helps.

My GP said she used to work in endoscopies and results can come back normal even when there is something going on. This is what she told me. I trust in her knowledge here....over the registrar who seemed inexperienced. My pain (inflammation I believe - isn't most pain of an inflammatory nature anyway) seems to move from one place to the other as an area of focus and then back to the other again So when my anoprectal pain is at its worse and I cannot sit, my swallowing symptoms are not so bad, and vice versa. Seems to be a pattern. Is that a Crohn's pattern ? I have no idea. My joint pains seem to be the same...following an up and down pattern from area to area...except for tendonitis which has been fixed in some places for way too long. Is that reactive arthritis, RA, Lupus?....I am still waiting for answers.

There has been a theory since the 1980's or thereabouts that menstruation is an inflammatory event. I believe this to be the case. Could explain why many of us flare in the run up and during our periods.

Good luck with your investigations, and your colonoscopy. Stay strong and positive. Don't let anything or anyone beat you down. You are worthy of being diagnosed and treated.

Best wishes.
juljul xx