Deppressed, Scared and Ill

[metroid]

Hi guys,

Deep inside i feel i know the answers. I know "what i should do". I guess Im writing here because i just need to vent out. To feel i can talk to someone. To be heard. Its been hell carrying all this fear and anxiety by myself.

Im writing this post after being sick for a month now. Undigested food, yellow floating stools, pain under the right ribs, sometimes on the left, sometimes on the back, itcky skin, foamy and darker urine.

Yes. I know. I know.

But my journey did not start 1 month ago. It actually started 7 years ago, and please hear me out, because its like i have lived with this certainty for such a long time.

7 years ago, i was very active. Played squash, did weight training. But ive never been able to cease my tobacco addiction. Im a smoker. A heavy one. (guess this was coming)

One day i felt a hard lump. An inch over my belly button. I also noted how, even i was pretty fit with low body fat, i started developing this small belly, but it was "different" .. it had like a water balloon feel to it ..

Before that time i had a lot of weight on, a big belly ... so i knew this was different. My stool also looked yellowish .. so i went to google "yellowish stool + Hard lump over the belly button + smoker + etc".. and of course i ended up in panic.

I live in a third world country, but by that time i had insurance ... not the best as i later found out (since it only covered 80% of cancer treatments which could be a fortune) but i made a private appointment with an oncologist.

At that time i was 37 years old and i said, pretty fit (weight wise) with some good muscle.

He checked me... didnt say much ... he agreed i had a hard lymph node over my belly button .. he said he could feel some smaller in my groin.

He then asked me to lay down and put his finger in my rectum to check the color of the stool. "pale" he said.

He wrote a prescription for me to have bloodwork: Tumor markers, stool test, and asked for an abdominal ct too ... and then said "come back when you have the results ... have a nice day" ... emotionless.

I walked slowly to my car and drove home.

When i got home i re-read my insurance policy. Found out about the 80/20 split in cancer treatment and decided i couldnt afford it, if it was the case. I also conviced myself i would never do chemo so what was point anyway.

I opened a drawer in my desk and put the prescriptions there.. under every single paper i had and barried it. I moved on.

But i always had that "thought" in my head so i search for other things online. Found that alternative "guru" site .. "Chris". Payed for a consultation, and oh man does the guy knows how to make you feel positive.

I started juicing carrots for around 4 or 5 months. I felt good. The lump never dissappeared but hey, i felt good.

So during the next 5 years i was pretty ok. I started gaining some weight (i stopped playing sports due to a knee injury) and i could see how my watery belly was suspiciously bigger.

As i mentioned before, i used to be overweight and i know a fat belly. This was not. My flanks .. this "love handles" where not there before.

This is year 2017 ... almost 4 years after i was sent to have an abdominal ct scan, tumor markers test and the rest which i cowardly rejected.

On february 2017 i took a trip to europe. A two week vacation. I was walking the streets of Rome at night, with my camera in my hand, and i suddenly felt a very troubling pain under my ribcage ... slightly tilted to the left side. I also had weird depositions. Greasy, stick to the toilett and quite foul smelling.

But i managed to ignore them. Kept on eating whatever i wanted, and took some painkillers.

2018 and 2019 went by and i was consistently focusing on work, and my belly ... even though i was fairly active i became obssesed with my watery abdomen. My shirts fit un the upper side but they became tight on the bottom part where my belly is.

So i did what is "illogical" I kept eating anything i ran into and put some more weight. Deep inside my denial i knew if i get skinny, this time the belly wouldnt go away... It was not fat.

During all this time my stools became brown again, but looking back they never sinked properly. I never had "nausea" or fever. And my itchy skin dissapeared.

Perhaps all the carrot juice was working? So i did what was logical. I stopped. Yes. I stopped juicing my carrots.

By half of 2019 i started having other issues. Pain in my lower abdomen, the left side. It was not acute, more like dull. Like a "discomfort" ... I ignored it again, because as all my pain so far, they werent bad enough to send me to an ER.

One night by the end of 2019 my Wife felt i had some hard lumps in my left shoulder. I touch them and well.. there you go. New friends. Right to the side of my deltoids.

The beggining of 2020 marked the real downfall of my symptoms. By that time i was around 30 pounds overweight ... i started having joint pain ... my lower left abdominal discomfort was more frequent and i started having pain under my right ribs. Stabbing pain that come and go and intensify sometimes when i moved but was not permanent. As usual, a pain that is not bad enough to throw me to the floor.

The pandemic striked. I started to have some dhiarrea by may 2020. It was dark and filled with mucus ... so i managed to controll it with ENSURE, bread, rice and bananas.

I though: Its the colon.

When the stools normalized i started to see small pepper like specks in it. "So now im bleeding".

I havent been totally pain free for a whole week since then, but i have managed to work, and play like all was fine to my wife and kids.

Until one month ago.

By that time, and after eating like i wanted to die and putting 50 pounds (this story started with me at 205 and now im 250) One morning a burning pain to the right of my belly button woke me up... i thought .. "ok .. lets give it 30 minutes and see what happens..." .. but i then went to pee and it came out pink.

"oh ..theres blood there.. this are the kidneys" ... So i guessed ... best case scenario: Kidney stones. Worst, cancer. And went to the ER.

They gave me something for the pain, which worked just fine, and then the urologist requested a simple (non contrast) Abdominal CT scan.

I thouhgt.. OK... lets see if its a stone and/or somethign else.

The CT confirmed the kidney stone. It was inside my right kidney "blocking" the ureter. The accute pain was because of it.

In the CT scan report, it showed "no intraperitoneal fluids, and no observable pathologies on organs , including the digestive system and the base of the lung." Something along those lines.

I was a "little" surprised. But inside of me i knew the radiologist attention was toward the kidney stone suspicion, and he may be lazy? Also the ct was without contrast ... so im not convinced.

In any case, that day the put a Double J stent and asked me to return in 3 days to have a procedure called Llithotripsy that will destroy my kidney stone using shockwaves.

"Its the least invasive, and very targeted" said my urologist.

So i did what i always do and went online and researched. lithotripsy may be dangerous to organs around the kidney. But what alternative i have ? So i went with it...

Besides the pain from the Stent and a degree of constipation from 3 times i had anesthesia that week (stent, lithotripsy, removal of stent) things where smooth ... BUT ..

2 days after they took out the stent is where HELL broke for me.

This was around 3 and a half weeks ago.

I went to the bathroom and had explosive orange diharrea. Sticky, foul smelling. That day i went like 7 or 8 times. I had a couple of slices of pepperoni pizza.

The next day i was on the same spot again... So i inmediatly started drinking a LOT of water and switched to bread, ensure, rice and bananas.

For the next couple of days i managed to stop the dhiarrea, so i added vegetables. But this time things were different ... My stool was REALLY yellow.. and it had LOTS of undigested food. Most of it. It looked mooshie, unformed.

For the last 3 weeks i have tried everythig. Ive kept a journal of what i eat ..at the beggining i was sure it was fat, so i cut all the fat i could away. It got a bit better .. but still yellow, floating stools. A week after, i guessed, well lets try glutten free whole bread ... I had ONE "brownish" kind of normal (though with mucus) floating stool, for it to reverse back to yellow in the next deposition. 100% malabsorption.

Now on week four, i have lost more than 15 lbs ... people are telling me "you are dieting?" ... and i have found myself tired and sleeping more and more ... i have a foggy mind ... Pain is everyday, comes and goes, mostly under right ribcage ... not acute but there in some way or another everyday , and my stools are still yellowish and thinner even though i havent touched dairy (besides ensure) nor glutten or excess of fat 2 weeks or so. Now i even have a bit of nausea and belching after even drinking water.

Thinks are looking grim. Today, i had watery dhiarrea again, now it even burns a bit.

So why havent i go to the doctor or ER?

I applyed to a new 100% full cover insurance .. it covers 2 million dollars a year .. and got approved. The catch is that there is a 60 days waiting period to cover anything "bad" like the big C. Im covered for accidents for the moment only.

If i go into a private office doctor and run tests privately i get an official diagnosis, the new insurance wont cover me.

On the other hand if i use my old insurance, i will probably have to do a gofund me to be able to pay the 20% of any treatment (up to 500k a year) since where i leave any treatment is extremely expensive. No way i will be able to get that ammount of money, i rather leave my family with it.

The issue is that i dont know if i can last until june the 1st ... (the day my new insurance policy becomes full coverage) ... im fastly deteriorating.

Meanwhile i have tried to make the best of my time. I made a list of all my photography and video equipment (valued over 40k usd) and made a column with "resell price" .. I also managed to make a will and got it notarized. I printed it and sent my sister (i still dont want to scare my wife) a copy in a close envelope, telling her it was just a formality for redundancy. In my will there are instructiosn of what i want if something happens to me. I made a document with all my passwords, bank accounts, etc.

I also started a blog for my 4 years old where im trying everynight to write 1 or 2 posts, sharing with her the way i see life on the most important subjetcs (Love, friendship, hardwork, morals, etc) and also been working in compiling all our videos and picture together (she lives with her mom in other city, my ex) since the pandemic i have only managed to see her twice (but we do facetime 3 times a week which i record always) ...

In my house im trying to be positive, smile more to my wife and stepkids (a girl 7 and a boy 12) .. sharing with them when i dont feel terrible .. or trying to act normal.

My wife knows ive been feeling bad, but i think she guess if it "would be urgent" i would be acting different .. she trusts me, so i feel im betraing her since right now im in this dark place that i just dont know what to do. Just forcing myself to eat , even though i have no appetite, and forcing myself out of bed since i cant live with the idea of dying not finishing at least the most important things like making sure my daughter receives our picture and that she have a website where when older she can read and get to know more about her dad .. and that he always loved her.

At the end of the day i feel like a coward, and that i deserve everything that is happening to me.

Im really sorry i have "kidnapped" your time with such a long text .. this is something i have not been able to talk to anyone.

I feel gratefull that at least i got to vent it out. Im really deppresed and scared but after reading the journey of so many people here i felt like at least some will understand what im feeling.

I do send my prayers (or positive energy) to all of you in here that are feeling like this too.

thank you,

M.

[metroid]

Hi guys, its me again. I started CREON... heres so far the experience.

So, today marks the beggining of the countdown for the next 31 days when i will be elegible (full 100% coverage for anything) with my international insurance. Im doing anything so i can to make it there ... 

Meanwhile, 4 days ago, and after the most horrible 5 weeks of my life (as i mentioned in my first post)  i got my hands on some CREON 10,000 boxes ... is horribly expensive, but im desperate ...  and i have been taking them with every meal. 4 pills with each meal, and 2 pills with light snacks (like ensure vanilla) ... So this is my experience so far with it ...

As i mentioned before for the last week i was having a lot of nausea (even when drinking water) and i was also remarkably low energy (sleeping aroudn 10 or 11 hours a day .. extremely tired and taking naps etc .. I was even having trouble sleeping at night so my schedule was all mess up) ... I was into my 4th week of having yellow, greasy floating stools also. 

So i started the CREON and the next day (24 hours) i still had the same type of BM ... but it look my nause was a bit better ... My appettite was not there but i forced myself to eat little meals for 4 or 5 times during the day ... I also make sure to drink at least 2 full glasses of ensure vanilla (450 calories for both of them)

The second day my energy levels where 80% back .. I worked all day long, and although i had the same type of bowel movement i felt much energysed .. i also found out i slept 7 hours and felt rested (i have always sleep between 6 or 7 hours a day normally)

Third day i felt 100% full energy ... but a ihad a bit of dhiarrea .. with mucus .. but i didt stop the creon ... No nausea ...

So today marks my 4th day and for the first time in more than a month i had a brownish , thicher, sinking BM .. it was still a bit greassy but it didnt smell as bad ... So i think at least is a bit positive ... 

THE WEIRD STUFF: ... Since 2 days ago i have red bright blood strikes in my toilet paper .. seems supperficial since i couldnt see any in my stool and its just low volume.. perhaps anal fisures or beggining of hemorroids because of so much dhiarrea in the past few weeks ? I also have some rectal itching but perhaps is the newly introduced creon ... who knows... i will try to change my toilet paper today ..

Im also having stabbing pains in my upper left and right quadrants.. they seem they are not going anywhere ... have them intermitenlty through the day.. which makes me think that if the creon works and pain wont go i definetly have something complicated or very bad.. but right now im just trying to find the way to keep my nutrition and energy acceptable ...

If creon keeps working (or i dont go broke first buying it) i plan to introduce some juicing (carrot) in the next days while keeping low fat .. Mostly natural fats and lean protein (fish, shrimp, chicken breast) .. while supplementing at least with 2 full glasses of ensures ( its so hard to get those extra 500 calories  in any other way)...

I just hope i dont get any huge pain that sends me to the ER, that i dont turn yellow and that i can make it for the next 30 days ... If i go before it will be like having no insurance and the public health system where i live is as good as a death sentence...

For those who read this, i want to say thank you for taking the time .. I know most of you are dealing with your own hard struggles (or your loved ones) and you more likely have a diagnosis , but im just trying to find some sanity venting out and i feel it helps me .. i hope i dont come out as selfish ...

Hugs,
M

 

 

 

[metroid]

Hi guys.. quick update ...

so 28 more days to go. Im still taking my creon ... it has worked so far .. taking 4 10,000 units with each meal and 2 10,000 with ensure and toasts (without butter) ... BMs are sinking although paler than a normal one should .. but the foul smell is gone .,.. they still bring some mucus (i guess i have some sort of inflammation).

The blood in the toilet paper seems to be gone (2 days in a row) ..

Besides that my energy levels are much better, but my ribcage pain is there every day .. left side and right side .. so im taking pain killers when i cannot deal with it (Nsaids) or when i have to go out to work or run some errands ... 

Im also getting cotton mouth in the morning but i read somewhere that Creon may give you that (or perhaps diabetes .. which may make sense since clearly my pancreas is not workgin 100%) ...

In any case i have taken the time to try to have all my affairs ready just in case things go south ... also spending some quality time with wife and kids ... is so crazy how when you are ill 3 to 4 weeks are like an ETERNITY to wait ... i just hope i can manage to make it so i can finally get a diagnosis ...

Hope you have a bright day.

M.

 

[PCUK Ellie]

Hi @egcasso. Thanks for your post and for linking through to the techniques you've found helpful. The anxiety of waiting for a diagnosis or having unexplained symptoms can feel so hard to manage, so hopefully others in a similar position will find these tips helpful.

Please avoid using blanket statements like 'you don't have cancer, you have anxiety' - this is a space for people to post from their own experiences and support each other, not to make diagnoses or offer medical opinions. It sounds like @metroid was going through a very difficult time when they posted in May, and as stated in our Terms, 'we’d encourage you to consider how your post may be read by somebody who doesn’t know you and can’t hear your tone or read your body language'.