Gall Bladder Ultrasound the Final Frontier

[Jerman]

i talked to my GI surgeon today who called regarding last weeks gall bladder ultrasound. I have now had every test relating to the abdominal area of the body that is known to man. I actually had high hopes, god I know that sounds so crazy, but hoping that they saw something wrong with the gallbladder as it seemed like a quick controlled way to end the pain I have fought with since Feb '09. I figured all would be well once they snipped that baby and took it out. I figured I could get my life back in a finite period and regain my strength and finally my weakened spirit.

Well the surgeon and the fates didn't share the same thoughts on this one as I did. The frikkin test came back clean! No stones, no sludge, no sign of disease, and "sorry I cannot remove it just based upon symptoms or requests." I asked him what he would advise me to do next, as again I have had the abdominal pain, D, C, intermittent V, as well as extreme fatigue. "I honestly do not know what to tell you."

Well thank you very friggin much doc! Now I suppose I can just take that little gem of advice and carry on with my life. So what do I do? I am having a very hard time with both depression and anxiety and set my hopes too high here...

I called my docs yesterday to tell them that I am weaning myself off of my antidepressants as I realized that I was experiencing a tremendous amount of the side effects including the rarely noted ones. I have a forum member to thank for that and will be sending a pm along.

So since everything has been tested and ruled out why do I have this pain that i have had almost non stop (in varying degrees) since feb 09? What do I say if I crap myself in public- cant say I have crohns, IBS, or any of these horrible conditions. NOT that I want them just want to know what i have so i may try to get the right help for it. Nope if i did that in public, I would be left with "well would you lookie at that I Crapped my pants, ohh man isnt that peculiar? WTF?????

I do not really know how to feel at this point and really cant compare with some of the higher levels of pain and suffering of others on the forum. However, this has devastated my quality of life and my ability to do nearly anything. I can't work, can't focus, can't really feel much of anything anymore.

So sorry to go on and on, but i had to get it out. I just want a brand new start, I hate this.

 

[dreamintwilight]

I'm sorry things still seem to be putting you at a dead end. I don't get it at all. I guess if I were you I'd try another doctor. Though, I know this was your second doc I believe.

All I can really do is support you during this time. I can't imagine what it feels like. I'll keep you in my prayers!

 

[Mountaingem]

I agree with Marisa, you owe it to yourself to get a second opinion. No wonder you are suffering from depression, I also went through the same experience. I completely understand your frustration. It took me three GI doctors to diagnose Crohn's-because the symptoms started when I was 14 they insisted I was anorexic, not that I looked anorexic because I had diarrhea 8 times a day and could barely eat. I actually had one of them tell me it was a psychological problem-yeah, like I could make myself bleed internally and run a fever...neat trick!
When I had colonoscopies, it would only show minor inflammation, not nearly what they expected from Crohn's. It wasn't until I was in my twenties they started to look for Crohn's, because I started losing large amounts of blood, and began having extra-intestinal symptoms, like iritis, joint inflammation, fistulas and fevers. They only definitively diagnosed Crohn's after I had an abdominal hysterectomy at 32 and they actually saw the Crohn's on the outside of the bowel. Since they they do a pathological study when they do a colonoscopy to check the disease advancement.
Blood tests should also be a part of your testing to look for inflammation markers and a high white cell count, in addition to possible anemia. Just don't give up hope and keep fighting until you find a doc that has answers for you. Best wishes to you!

 

[Jerman]

Thanks Marisa & Jeannette, I truly appreciated the kind thoughts and support.
I have been to see a total of 6 specialists from different facilities and have had even seen an oncologist when I started growing strange bumps at the cleft of my bum. (there is a lot of this stuff on old threads feels like I have been whining about this forever) I have been to nearly every hospital on the southeast coast of mass. I have had 4 colonoscopies, 2 endoscopies, poryphias, multiple versions of bloodwork, xrays, cat-scans, ultrasounds, pill capsule endoscopy, some fancy scan machine which took 1200 different pics of my insides at all cross angles, and probably a few i do not remember. I was told by some very competent docs in Boston that I had every test that they had to offer. I remember them saying a few times that they even had to read up on a few of them as they had never performed before or that it had been sometime
.

I made an error in my initial entry saying that i was coming off all of my anti-depressants. I am only doing this with one of the two as the side effects are absolutely staggering. I am usually one to question doctors about procedures and meds but got into a mode of just doing what the doc says.

My unemployment benefits have run out and are apparently waiting for congress (the same corrupt pigs that vote themselves raises and lifetime pensions) to vote the extensions to continue starting in October. I cannot find work in my field and probably couldn't do much physical if i could get hired. I have not been able to find anything that paid me remotely close to what I was earning and need to support my 4 kids and wife.

I have tried again and again to be strong to dig deep and find the will to keep at it. It seems like such a no win struggle at times. I truly love my wife and kids more than anything in this world and I hate to disappoint them. I am almost always in some level of pain right upper rib quadrant that spreads across navel and down the left side. This pain gets almost instantly worse when I am upset and can at times be a 9 out of 10 on the pain scale.

I want to get better but am hesitant to go on with the docs but just know that as soon as a doc says it is all in my head i am going across the table after them. Once again I find myself writing here in a level of despair that has become just too friggin familiar, it feels like it borders on self pity but the pain in body, mind and spirit seems to have broken me.

I just don't know what to do anymore.

 

[dreamintwilight]

What about trying non gastro-related tests? Although I'm sure you are sick of tests by now. I have no idea what those might be either. I guess I'm just trying to throw some ideas out there. What about the Mayo Clinic? Alternative routes like aloe vera or some of the other things D Bergy has mentioned?

I am at a loss. I wish there was something more I could do or say, but perhaps advice is not the most important thing right now but support. How is your wife handling all of this? Hopefully you are allowing her to carry some of the burden with you. As you said, the stress seems to worsen your condition.

I know it's easy for us to tell you to hang in there and not give up when you feel like you've been doing that for so long with nothing to show for it. I hope you can muster up enough to fight for your health and the right answers,. At the very least I hope your friends and family can be there to lean on.

 

[Lisa]

Are you able to go outside of Mass????.....When I was a child, my mother ended up having to take me to Yale (over an hour drive) to find a place that could diagnose me.....

DON'T GIVE UP!!!!!.........

My younger brother went to doctor after doctor (specialist) in the Boston area a few years ago trying to figure out what was wrong with him - finally he found one in COLORADO that figured out what was wrong with him, and was able to FIX the problem (for a while at least - until he needs both hips actually replaced!).......through surgery.....

Prior to that he went through years of pain, HIGH doses of morphine and other pain killers - so much that I don't know how he ever functioned, no less work for international companies!

There is still hope - you just haven't found the right Dr yet!!!!!

 

[Mountaingem]

I had a similar experience, where the doctors focus on the abdominal issues as being a manifestation of depression-I thought they only did that to women lol. It is not a sign of weakness to be at your wits end, you are a very very stong person. If you weren't, you wouldn't be reaching out for support-the most difficult thing in the world is to put yourself out there and ask for help!

I think the constant pain and suffering you are experiencing, coupled with frustration at inept doctors is taking its toll on you. Please tell your wife EXACTLY what you've told us, I know you don't want her to worry but my husband will be the first to say the thing that scares him the most is not knowing what's going on with me. Let your wife advocate for you with the doctors, sometimes the doctors look at it differently with the SO also tells them the impact both physically and emotionally this has not only on the patient, but the family as well.

I think you need a new set of eyes on your test results, maybe try a research hospital, or get all your info in a packette and interview new doctors until you "click" with one. We've all been there-just because a doctor is supposedly on the top of his profession doesn't mean he actually HEARS his patient, and with Crohn's that's half the battle right there, even if your tests proved everything, you would still need someone who understands YOU, not just the disease.

You have a rare treasure, being best friends with your wife. I'm so blessed to be married to my best friend, too. If you really feel that you're ready to end it, your depression is definitely not controlled well, either, so PLEASE PLEASE reach out and let someone close to you help you get the treatment you need. It is most definitely NOT weakness, it's a manifestation of a disease. No one would say that I'm "weak" because I have bleeding or ulceration, and no one thinks you're weak either.

Please keep us all posted on what's happening with you, and all of us will be there to help in any way we can, and will be fighting right along side you!

 

[Astra]

Dear Jerman

I'm heartbroke about your thoughts of dying! This isn't going to happen my friend!
Sending you a PM and email, I have your addy
speak soon
love as always
Joan xxx

 

[Crohn's 35]

OH Jerman! You can't give up, this is not like you, you have been such an amazing person to me and others here. I know you feel like you are letting people down but you have to fight. Everything works out , somehow and somewhere something picks you up and keeps you going. It took me a year of dx and soooooooo many tests, and I was soooooo sick, but finally my Gi believed in me and sent me to a major hospital in Toronto for an unbias opinion by a teaching doctor.Boom, he figured it out and had a scope from the mouth and shot barium into it to follow it all the way down. I was at wits end, and I had to fight to for I had a 4 year old at that time depending on me. Whilst I was going through a bad divorce too. I am still here, and at times I Thought like you but in the end ... I fought my way out, sometimes prayer helped me get through. My husband is a wonderful support like you have. So fight! We need YOU too! Hang in there, ((hugs))!

 

[dreamintwilight]

I agree, Jerman! Your last post last night almost brought me to tears as a read it and then relayed it to my husband. I do not have much valuable to offer, but hopefully stories like Pen's will inspire you to keep going. And I like Jeannette's advice for allowing your wife to be an advocate for you. Don't carry al the weight on your shoulders when you have loved ones to help you push on!

 

[Regular Joe]

Hi Jerman,

I'm feeling for you. You've been dealing with this for so long. I was searching your threads, but I couldn't find a few things you probably already had tested. But I'll ask anyhow.

Has anyone checked for diseases or conditions of the pancreas, liver, kidney or spleen, other than for inflammation?

Have you seen a hepatologist or an endocrinologist? Some are certified GI's, but some work in infectious diseases, or immunology.

Do you drink alcohol regularly. I'm not asking if you're an alcoholic, but do you frequently drink (relates to pancreas)?

Obviously something is wrong, but it may not be a digestive problem per se. Maybe it's something that results in a digestive malfunction? Example: I'll get certain migraines, and I vomit and get nauseated. That involves two systems: central nervous and digestive.

Or if there is an overabundance of a certain enzyme from the pancreas for example, or billiary duct, that will cause a digestive repercussion. From the threads involving pregnancy and Crohn's flareups, hormones seem to play a part in keeping flares quiet.

I'm just thinking out loud...what if the problem does not directly involve the digestive system? There are other systems. endocrine, lymphatic, cardiovascular, reproductive, urinary, or even central nervous system. What if something is wrong in one of these systems, and the outcome is a "functional disorder" in the digestive system?

I'm just throwing out ideas...good luck man, and I'm sorry it's been as difficult for you. My heart goes out to you and your family.

Joseph

 

[Rebecca85]

I came across something called hypiadrenalism (Addison's disease). It's another autoimmune disorder, where not enough cortisol (a hormone) is produced. Symptoms include fatigue and weakness and many patients have gut problems. In fact, many patients are misdiagnosed with appendicitis and undergo an op before they realise it's not (sounding familiar?), because Addison's is quite rare and it doesn't occur to drs to consider it. So that's one example of something else causing digestive symptoms.

 

[Jerman]

Thanks to all for writing, sorry for the delay, our daughter has had a bug and has not been herself at all, so she got my full focus and needed lots of cuddles and reassurance.

Pasobuff, It probably is a good idea to venture out of state into another experts den of wisdom. I am not really in a place to do this at this point as I am finished with being poked or prodded for right now and to make my life that much more interesting I am still unemployed and my benefits run out in two weeks. One of the reasons that I stopped going up to Boston was the cost, the other is my charmingly bullheaded nature.

Mountaingem, I really try to not discuss my pain or symptoms with my wife anymore. She has her own struggles- fibromyalgia and anxiety and just worries herself to the point where she does not feel well and can't function very well. Although we met there you won't be seeing this one on a match.com commercial ::here are two train wrecks that fell in love::
I am very lucky that she is my best friend and I love her dearly, but having two people with chronic pain issues in one home can bring along it's own set of prickly dynamics. It can be a dreadful day when we are both flaring up and still need to manage kids, house, etc. We sometimes get frustrated with our own and each others pain issues and get into the Bickerson mindset which just sucks.

I suppose the upside of "jerman being jerman" is that I am not at all afraid to speak my mind- there are a couple of lovely examples of my being ::ahem:: assertive to medical personell. One doc flat out refused any pain killers and I asked him to step just a lil closer so I could give him a clear example of how my pain felt. lol, I still think that one is some funny sh@$%! Another time while hospitalized, I had a doc enter the room (not introduce himself) and begin taking to his team of wanna-bees (students) about me. I first asked him very politely (everybody gets one right?) who he was and what was going on with my case, he looked at me briefly and went on to talk over me to the students. I then instructed him to get the @#$@%% out of my room until he learned proper social skills, what a *******.

Thanks so much for your kindness and support Jeannette.

Awww, Joanie, Penny, & Marisa I am really trying hard my friends. I cannot put anymore on my lady's shoulders as she is fighting her own battles and tends to engage in a bit of escapist behavior more and more often. She will go for a few things to the store and come back 4-6 hours later. She will talk on the phone for hours at a time. I know we all handle things differently and knew from the start she was a chatter but OMG, I wouldn't have that much to say to Christ himself!!!! Plus I have to admit that my "faith" has become a rant of sarcastic statements better kept to myself. Each day I make my feet hit the floor and try to at least accomplish something, but somedays my mid swirls with a lotteryball machine type thought process of depression and anxiety.

Joe Thanks very much for the ideas, I will have to look back at the medical records but am pretty sure that they at least looked into the pancreas,liver and i did go to an endocronologist, hepatologist, and an oncologist up in Boston. I drink about a six pack a week, sometimes twice but am not the madman I was in my twenties, I am told it was a hell of a time. :biggrin:
You gave me a lot to look into and I truly appreciate that thanks Joe.

Rebecca, Thank you very much for the kind thoughts and the new info, i will look into it and see if i have been tested and if not if I can be.

Thank you all so very much, I am always amazed at the quality of character of the people on here and how much they care.

Jer

 

[Starrburst12]

I am sorry you are feeling so awful.
I just wanted to share a quick story. My sister, when she was in high school starting having awful stomach pain, D, C, nausea, vomiting. Because of her age and being a female, it was a year before any doc concidered it to be anything other than an eating disorder. Took several years and MANY doctors later...Finally going to the Cleveland Clinic (Who did not run any repeat testing)...to figure out she had a pinched/damaged nerve in her neck...somehow was tightening up the muscles in her neck and reducing blood flow to her stomach. Causing most of her symptoms. She did physical therapy...still does physical therapy off and on for her neck. And the symptoms resolve every time she gets her neck to loosen up. It's really strange. Theres no "real" diagnosis for her, like a disease name or anything...her neck is just messed up. The docs believe that she had whiplash from a car accident (not even a bad accident) about a year before she had symptoms and that was the cause.
Anyway... Hang in there. I don't know if that story helps but I just thought to share because it took the right doctors to think outside of the basic causes and really strange testing to put the pieces together.

 

[Jerman]

I am sorry you are feeling so awful.
I just wanted to share a quick story. My sister, when she was in high school starting having awful stomach pain, D, C, nausea, vomiting. Because of her age and being a female, it was a year before any doc concidered it to be anything other than an eating disorder. Took several years and MANY doctors later...Finally going to the Cleveland Clinic (Who did not run any repeat testing)...to figure out she had a pinched/damaged nerve in her neck...somehow was tightening up the muscles in her neck and reducing blood flow to her stomach. Causing most of her symptoms. She did physical therapy...still does physical therapy off and on for her neck. And the symptoms resolve every time she gets her neck to loosen up. It's really strange. Theres no "real" diagnosis for her, like a disease name or anything...her neck is just messed up. The docs believe that she had whiplash from a car accident (not even a bad accident) about a year before she had symptoms and that was the cause.
Anyway... Hang in there. I don't know if that story helps but I just thought to share because it took the right doctors to think outside of the basic causes and really strange testing to put the pieces together.

hi Starburst, excellent point gotta always remember the mind, body, spirit connection right? Btw sorry your sister has had such a hard time.

 

[Jerman]

Feeling a bit better

Hello my friends, I am happy to say that I am feeling a bit better overall as I titrate myself off of that anti-depressant from hell. Please anyone who is going on to a new med of ANY type especially anti-depressants- READ THE SIDE EFFECTS!!! I was taking effexor at a fairly high dose and 3x per day and it was making me feel like hell. As I read through the side effects I had nearly each one both the common and the rare. I am down to one pill per day this week and although some of the withdrawal moments were pissa, I feel more like me than I have in a long time.

Since I am at times on here to gripe about how things are going in my little piece of the world, I wanted to share some good news too! Even the fog in my big ol' head is a clearing up. Hope things continue to go in this direction I also have strong leads on three jobs, so here's hoping!!!:cool2:

 

[dreamintwilight]

SO glad to hear your good news, Jerman! I am continuing to keep you in my thoughts and prayers. Your upbeat personality is already apparent in your last post which makes me happy!

Happy happy joy joy!!

 

[Jerman]

Thank You

Hi Silver & Marisa,
you have both been so very wonderful and supportive of me through this struggle. I am very very grateful for the friendship of you and others and hope that you would be comfortable calling on my if their is some what that I could help. I will be sending you a PM, thanks again.

Jer:thumright:

 

[Crohn's 35]

How are the jobs coming? Hope you are well!

 

[Jerman]

How are the jobs coming? Hope you are well!

Hiya Pen, no news on that front yet but holding out hope for at least one interview...

 

[dreamintwilight]

You are welcome, Jerman! Thanks for the PM. Good to know I have someone to vent to if I need it!

 

[Cat-a-Tonic]

Hi Jerman, I'm a latecomer to this thread but I wanted to strongly agree with what Rebecca said about being tested for adrenal insufficiency (Addison's disease) if you haven't already. I've been through a lot of tests too (certainly not as many as you have) and I'm also still undiagnosed because they haven't found anything on any of my tests either - everything looks totally normal on every test I've had. So I know how frustrating it can be. But I tried prednisone recently and it worked, so I know I have something autoimmune, and the assumption has always been IBD because I have so many gastrointestinal symptoms - pain, diarrhea, nausea, some vomiting, weakness, fatigue, etc. Then my doctor sat down and thought about why I'd respond to pred but not have anything show up on any tests, and he realized it could be adrenal insufficiency/ Addison's disease. I'm having a blood test for it today so I still don't know for sure, but it definitely would explain why I responded to pred as Addison's is autoimmune, and it would also explain why everything looks good on scope/ biopsy/ CT scan/ etc. I really do encourage you to look into it further for yourself if you haven't already - like Rebecca said, it's fairly rare, so it doesn't occur to a lot of doctors to test for it. It's just a blood test so it's easy to check into it.

Good luck, I really feel for you and I hope you finally get some answers. It broke my heart to read your earlier post about how you were thinking about death and I was really glad to read your more recent posts in which you sound happier. I know firsthand that being this ill with no answers can send your mind to some pretty dark places - but please don't give up, there are answers out there, we just haven't found them yet.

 

[Jerman]

Hiya Cat,

Thanks for the info and welcome to the forum. I am sorry to hear that you have had such a rough road of it. I agree that not knowing what our respective diagnoses are is a real tough one to deal with. Your mind can just run with the possibilities at times. I will call my Doc and ask if I have had the Addison's blood work. I hope that you are able to find both a diagnosis and good health very soon. Take good care.

Jer

 

[Astra]

Dear Jerry

I am so happy for you my friend, that finally you have had the strength to wean down off the anti-D, cos with the best will in the world, they can have a tendency to make you feel worse! I know, I was given them for donkey's years, cos remember, I was mental, neurotic, a psycho and a weirdo! But really, I was a Crohnie on the sly! lol
Chat with you soon and I've sent you a PM
love as always
Joan xxx

 

[Jerman]

I through out my back over the weekend, how I do not know. However, this means that Captain ******* (that would be me) has somehow managed to increase the level of discomfort and pain that I am in. Fabulous I hurt when I stand, sit, and lie down. WTF? my boys are coming for 2 weeks tomm. and I can't do a damn thing!!!!! :hallo3:

 

[Crohn's 35]

Ok, what did you do now? Come on , spill it, tell the truth now lol.

 

[Jerman]

Hello my friends, just an update from my latest trip to the ER. As I mentioned i hurt my back (I don't consider myself having a "Bad Back"), just woke up the other morning with terrible lower back pain. the pain began in my lower right quadrant of my back and shot down my right leg like electricity. Sounds like sciattica (sp?) but seriously impacted my ability to move. I went to the GP on Tuesday- he gave the standard assessment, "Ok push against my hand with you leg ok, yep you have reduced strength on right side looks like a sprain." Sounds reasonable, he gave muscle relaxants, ibuprophen, and and told me to rest it for two weeks then we would do Physical Therapy.

So the next day i call his office as the pain was worse as was my mobility. He had left for vacation and they encouraged me to go to the ER. I tried to explain to the staff that I was not looking for stronger meds but for a referral for an MRI, cat, ultrasound. I did not feel that an xray would be worth a damn as it didn't feel like i had broken or dislocated- wanted a soft tissue scan. Blah blah frikken blah said the talking head- your insurance won't cover and MRI and they take time to be approved etc.. She again suggested that I go to the ER and I explained to her that I did not feel it would be in my or the hospital staff for me to sit,stand, and pace their waiting room floor like a caged cranky animal. I asked for the Doc covering my doc's patients to please write a referral for a scan-NO. Ok so I sat at home for the first day as the ER was swamped ( i did call) and I my friends, am a stubborn ass.

So I limped into the ER hunched over like I had about 30 pounds of buffalo crap in my pants. I waited and was given an xray which of course showed nothing. The did a pp test and blood work, found blood in my urine and then ordered an ultrasound of my kidneys. They found a spot, on my kidney but did not seem concerned.

I must admit that i share the responsibility of why I do not know what the spot was as I was becoming agitated with being there all day (11am-5pm) and had my boys at home for the first day of two weeks vacation with me. I also must admit that I had come to the opinion that they off course were not going to find anything.

I told my nurse that I was uncomfortable and needed to go home soon. I kind of got the "there there dear" treatment from my nurse when I first voiced my wishes. I tried to be good & patient but was becoming agitated and anxious, I wanted to be with my babies.

I waited another 20 minutes and then told staff, respectfully, that i would be leaving AMA in 5 minutes as I was DONE with being there. So I am home but in a lot of pain and feeling very grumpy! Thanks for touring once again with Capt. *******'s guided tours.

 

[Silvermoon]

Awww Jerman!! It sounds like you are having a horrible time..... (((((((( HUGS )))))))))

The nurse in me, however, is seeing little red lights all over the place.... indicating kidney infection.....

If you can, I would really go back and have them check it out....just to be on the safe side.... :blush:.....

It may be muscles... but I would sure hate for it to be anything more....

Let us know, k?

((((((((( Jer )))))))))

 

[Astra]

Hiya Jerman

God sweetie, I feel your pain! I really do!
I would go back too, blood in urine is a sure sign and the pain in your back defo radiates from kidneys.
sending big hug your way my friend, hope you're ok
lotsa luv
Joan xxx