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Crohn's Disease Forum » Support Forum » So overwhelmed,anxious & F'n losing it!!


 
08-12-2009, 08:27 PM   #1
Jerman
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So overwhelmed,anxious & F'n losing it!!

Ok, so yesterday i go to the new GP, very nice,agreed to take my off one of my meds as I learned it has a side effect of body aches, weakness, and lethargy.
WTF???

In the last few days I have developed a strange rash like area, it starts at the cleft of the mighty mighty buttocks and has spread to the length of my bum crack. I am sorry to have to share this one but you are a pretty tough group, but it is still embarrassing. It is awfully itchy and has a few open areas. I showed the doc and he gave me a cream for it.

Unfortunately, due to the fact that I am constantly in a mental fog, I did not ask him what it is called? I was also a bit embarrassed to show and discuss this with the GP, only my 2nd visit to him and I'm like ,"Hey doc do you mind taking a look at my ass?"

At least with the proctologists you can just rationalize having to show them because thats what they went to school for. But here it is only my 2nd appt and i am asking him to check out the rash around MR. BROWN'S OFFICE!!!


The area is apparently now the breeding place for the new bubonic plague, and here it is growing right out of my ass!! The sores are thick and run deep into the skin, feels like a bug bite. Yesterday after the appt. the area was draining and soaked thru my boxers and shorts.

I am starting a brand new job on Monday for C#%%^^@#'s sake!!! Can you imagine the introductions? "Yes, welcome aboard Mr Rottenass!" "Excuse me but are you aware that you are leaving a sizeable ass puddle in our lobby?"

Or even the staff conversations, "New guy seems nice but what's up with his ass?" "yeah but I heard he's got the plague, EWWW!"

Sorry not done yet,

In the morning my wife and I are driving up to boston again for a formal sit down with the doc and the physicians assistant. They still have not found what is wrong with me and already told me that "there are no more tests."

How can they just stop when i still hurt? Is this the best I can hope for? Why does it feel like they are quitting on me? THey can just move on to the next patient but I have to keep the "Functional Disorder".

I have huge anxiety that I will be unable to perform my new job. Oddly it is not the matter of working with the developmentally disabled people enrolled in the program, I rock at that stuff that is where i truly shine.

Even the fact that i will be searching for jobs for my new group in a recession, doesn't scare me, I KNOW that will be tough-but i CAN DO THAT!!!

What doea scare me is that my F'n body will give out on me! I am only 42 for christ sakes. I hate this friggin disease! I am so anxious & tightly wound i feel like i can explode. I am shaking as i type this, I wish i could escape this feeling of f' n doom & gloom. The simple reality is that if i fail, we lose our home. There is no way I can look my beautiful wife and kids and tell them that....

I love them all so much. Please give me the strength to provide for my family.
08-12-2009, 08:43 PM   #2
D Bergy
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I hate to tell you that I laughed at your "job scenario" but the way you put it was hilarious. Maybe stand up comedy is your calling?

If I were in your position, I might think about getting some Low Dose Naltrexone. It certainly sounds like an autoimmune condition, no matter what it actually is named, and LDN is for Autoimmune diseases of all kinds. Since it has no serious side effects, I really do not know what you have to lose.

The sores on your butt may be the beginning of Hidradentis Suppurativa. It is hard to know from a written description, and I really do not want to see photos, but it is associated with Crohn's and is an autoimmune disease of its own.

Google it and see if it fits.

I hope things get better for you. As a bread winner myself, I know the thoughts that go through your head when you are getting too ill to work. The stress does not help the situation either.

Good Luck

Dan
08-12-2009, 09:01 PM   #3
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JFC, Jerman...

I don't even know what the hell to say at this point. I feel awful for you. I'm actually speechless.

I can't imagine how you continue to stay (or seem to stay) so positive.

I'm sorry. I wish I had something to add here. I feel horrible.

Just know we're all here for you.
08-13-2009, 02:33 AM   #4
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Show it to the doc... it's his job!
I work on the premise that whatever you have to show to the doc, he/she has seen it before, and worse!
When I went to get my prostate checked by the lady doc, I just sighed, dropped my pants and assumed the position while she snapped on the rubber gloves. There's no indignity I won't stoop to (??!!??)... it's just what you have to do! you can always come back on here and vent!
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08-13-2009, 06:38 AM   #5
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Hi Jerman - sorry you are having such a rough time with everything, and have something "new and fun" to add to your problems.
The only thing I can offer for advice is to get yourself some panti-liners. Sounds like 2 of the thin ones layered a bit side by side might give you big enough coverage to maybe save you a leak through at your new job.
I know it's embarrassing to think of wearing those - I put on kid's size diapers last summer (just like a BIG pad) just to go to the store a few times. I felt awful at first, but it gave me the confidence to be able to go out.
SOMEthing's gotta turn around for you soon - home you get some answers.
Good luck with your new job!
08-13-2009, 07:34 AM   #6
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hi Jerman.. i think i've missed many of your previous posts so i'm not up to speed on what tests you've had so far, nor what the results showed. but - even if they've done loads of tests on you, they can't leave you with 'Unknown' stamped on your file and a lifetime of unexplained pain ahead of you.. get tough. demand to see the hospital complaints department, or the patient care trust - anyone who is higher up than all the consultants you've seen so far. maybe consider a change of hospital if it's feasible.

i'm wondering if the rash & sores on your bum are similar to severe nappy rash.. i saw this on my daughter when she was tiny, it got in a horrible state like you described.. doc gave her antifungal cream with cortisone.

i hope things improve for you soon... and i am so sorry you're struggling so much and with the added responsibility of having to keep the house going for your family. it's a tough place to be
08-13-2009, 08:20 AM   #7
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My Butt Hurts said:
I put on kid's size diapers last summer (just like a BIG pad) just to go to the store a few times. I felt awful at first, but it gave me the confidence to be able to go out.
I just want to hug you right now
08-13-2009, 08:28 AM   #8
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Jerman, after some (much-needed) sleep, I came back with some questions, since we live near each other.

We know you've been to hospitals in Boston. Which ones have you been to? I know there are quite a few there.

How many doctors have you seen? You said you have a new GP, right? I wouldn't stop until one of them gave me an answer - I had to go through 3 GPs, 3 GIs, and 2 ERs before someone would even look past my charts. It sucks a bag of you-know-whats, but try to hang in there. It's NOT fair for you to have to live like this - it IS worth fighting for your livelihood!

I hope you know that you can always PM me if you ever want/need to talk/vent.
08-13-2009, 08:42 AM   #9
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Santos61198 said:
I just want to hug you right now
Please stop flirting with me. I am not even your type.
Okay... yes I am!

It was fine - I'd do it again, I don't really care about that stuff any more. Hell, I just wore my "I ocassionally crap my pants" tshirt to a friend's party. The way I made it okay for myself was that an adult diaper on a young person is not funny in any way. Me wearing my daughter's leftover diapers like a big pad? Kinda funny.
No hug needed Ris, but I know you have ulterior motives and were just using the dype as an excuse

Also Jer, if it IS just a diaper type rash like Ding suggested, Calmoseptine can help clear that up in no time. Do you have butt leakage? That's usually what causes my chapped ass, but the Calmo is amaaaaaazing.
(I know - yours sounds like it's worse than chapped ass, but you know what I mean.)
08-13-2009, 08:53 AM   #10
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My Butt Hurts said:
Please stop flirting with me. I am not even your type.
Okay... yes I am!
No hug needed Ris, but I know you have ulterior motives and were just using the dype as an excuse
Wow... am I that transparent?
08-13-2009, 09:02 AM   #11
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Santos61198 said:
Wow... am I that transparent?
<3
08-13-2009, 09:24 AM   #12
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Hi Jerman, just re-read my own post... hope I didn't come across as unsympathetic in my haste to "lighten the mood". Hope you feel better soon and get all these problems sorted out.
08-13-2009, 08:14 PM   #13
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Oh Jerman, your post cracked me the hell up until the end. Now I'm all teary eyed, boo!

The first thing I thought of, too was a severe "diaper rash". My son had an allergic reaction to a brand of diapers and it left open sores to where even cream wouldn't stick to his butt.

Sending speedy recovery vibes your way!
08-14-2009, 08:03 AM   #14
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What doea scare me is that my F'n body will give out on me! I am only 42 for christ sakes. I hate this friggin disease! I am so anxious & tightly wound i feel like i can explode. I am shaking as i type this, I wish i could escape this feeling of f' n doom & gloom. The simple reality is that if i fail, we lose our home. There is no way I can look my beautiful wife and kids and tell them that....
Same here Jerman, but I tell you the only relief I've had in a LONG time is the Remicade. Have you tried that yet?
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08-15-2009, 10:12 PM   #15
Jerman
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Thanks to Dan, Ris, Steve, MBH, Ding, The Mighty V, and Farm for the wishes and words of support. I want you to know that your words gave me the conviction to hold my head up and be a big boy at the docs. I had my appointment in Beantown and am glad that I went. As it turned out, It was a real plus in terms of making my self heard, to email the list of symptoms (as well as a written plea for help) ahead of the appointment time for their review.

So after we talked about how we had already run all of the tests relating to crohns , and the docs "suggesting" a pill cam (really?... didnt i friggin ask for that a month ago?) Feeling a bit like a runaway from the local leper colony, I walk over to the exam table, drop 'em and give all three docs a view of the gates of hell- aka my plague ridden bum. Unfortunately the medicine that my GP gave me just the day before was ineffective. In fact it just seemed to anger the rash. So when I show the 3 docs they were quick to admit that they hadn't seen anything like it before. The quickly decided that I would now be adding dermatology, hematology, and Oncology.

They arranged for an "urgent" appointment with the dermatology dept later in the day at 3:30, these folks introduced themselves as being like the CSI's for skin issues. These folks and their lovely collection of pointed tools proceeded to pluck, scrape, and dig out several ( i think 5) tissue samples to be biopsied. They discovered a bonus ::sarcasm:: fissure while examining me. Sometime during this they hand me a photo release form, I of course self-advocate for royalties if my bum hits the web, no shit I really said it .. with a straight face too!!

She explains that they are to take a photo for her to be able to reference the area from appt. to appt. to gauge growth or any type of change in the area of the rash. Unfortunately, the ahem... removal of tissue had apparently left a need for two sutures Which I continue to enjoy :::S:::
as I write this.

After the doc spoke on the importance of not scratching -----(Holy shit there it goes!!! my last shred of dignity running out of the office!!) ..... or picking at the area as the sutures will hurt. My mind drifts a bit and I can picture myself like one of those dogs that has to wear the bucket around their head so they don't chew their ass.

Thanks again my cyber peeps for your words of support.
08-16-2009, 03:26 AM   #16
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It's called an Elizabethan collar round here. I can just picture a huuuman in one!

Hope you're now getting somewhere!
08-17-2009, 08:24 PM   #17
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Is NO ONE else amazed that Jer had to sign a PHOTO RELEASE FORM FOR PICTURES OF HIS ASS????!!!!

You mentioned the dog collar to keep from itching, how about just dragging your butt around on the floor like dogs do?

I didn't click the link, I was afraid you somehow got a picture of your butt. Maybe it was a link to your diagnosis. Did I miss something? What did they say? Did they give you anything to put on it?
08-17-2009, 10:35 PM   #18
fenway1971
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Hey Jets fan in Pats country,
I'm not sure what to add other than I'm pulling for you too. I've joined the Calmoseptine fan club too - search here and you'll see many use it with glowing reviews.

Hang in there, man. Keep venting away. It's therapeutic.
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08-18-2009, 08:22 AM   #19
Jerman
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My Butt Hurts said:
Is NO ONE else amazed that Jer had to sign a PHOTO RELEASE FORM FOR PICTURES OF HIS ASS????!!!!

You mentioned the dog collar to keep from itching, how about just dragging your butt around on the floor like dogs do?

I didn't click the link, I was afraid you somehow got a picture of your butt. Maybe it was a link to your diagnosis. Did I miss something? What did they say? Did they give you anything to put on it?
I had to stop dragging me bum across the rug as my wife kept smacking me with the newspaper!

The link was supposed to be a pic of a dog with the buckethead thing on. It doesnt work. They gave me two tubes 1st Triamcinolone Acetonide ointment, the other is Nystatin. Thankfully they are working as the bubonic plague seems to be fading!
08-18-2009, 08:27 AM   #20
Jerman
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fenway1971 said:
Hey Jets fan in Pats country,
I'm not sure what to add other than I'm pulling for you too. I've joined the Calmoseptine fan club too - search here and you'll see many use it with glowing reviews.

Hang in there, man. Keep venting away. It's therapeutic.
Thanks so much Fen. I feel like all I do is vent sometimes, feel like such a grump.Thanks for the support, but ya gotta change the Avatar. Don't pack it in yet! You can't give up on the team yet! Damn!, Buddy you'd never make it as a JETS fan (J....E....T...S...).
08-18-2009, 08:41 AM   #21
fenway1971
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Jerman,
It's my 5-day pennance for losing to Ris and JillyBean last week. I don't give up.

Are you ready for football? Jets are gonna be tough to beat this year I think. So, how'd you become a Jets fan and live in my home state?

PS This forum is for venting. You ain't a grump.
08-18-2009, 11:49 AM   #22
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hey Jerman, I'm just catching up on all this stuff. Good to hear that your plague is clearing up. Sorry to hear that it's still just frustration after frustration with no answer. I'm not personally going through that, but I know a few who are and it sucks. Please, vent away!
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08-20-2009, 11:24 PM   #23
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It sounds like they are taking your rear end much more seriously, good job Jerman! And yes please vent/let us know what is going on as things proceed.

Good to hear your bum is feeling a bit better
08-21-2009, 11:54 AM   #24
Jerman
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fenway1971 said:
Jerman,
It's my 5-day pennance for losing to Ris and JillyBean last week. I don't give up.

Are you ready for football? Jets are gonna be tough to beat this year I think. So, how'd you become a Jets fan and live in my home state?

PS This forum is for venting. You ain't a grump.
Hey Fenway, that is a tough price to pay for the bet.
Yes, I am sooooo ready for some football!!! I am a absolute fanatic when it comes to football. One of my earliest childhood memories is watching Broadway Joe and the boys stick it to the Colts in Superbowl III. Unfortunately, and sadly ironic is of course the fact that they have not been to the big game since.

Growing up my family lived Pennsylvania, both upstate and downstate New York, Connecticut, and finally near the Cape in Mass. As a result I have a few teams which I always have pledged blind allegiance to. In Baseball, I love the Red Sox, and the Phillies ( Mike Schmidt --favorite player) but will also root for the Pitt Pirates (remember Pops Stargell, Dave Parker?), as well as the Cinncinati Reds (Bench, Conception (sp) )who i root for always. I was a fan of the Yankmees for years as a kid, as my grandfather LOVED them. I stopped watching baseball for several years when Munson was killed, and started years later after moving to CT. to root for the Red Sox (JIM Rice).

When it comes to the Jets though, there is no substitute, every year I can convince myself that they have a good shot at the prize.. Late in the season I dont stop pulling for them until they are "mathematically" eliminated. I even watch the entire NFL draft with at least two draft books on the table in front of me.

So...same question back at ya, how can you live in New York and root for Belicheks Cheatin swinebags? (uh no offense to you kind sir).

:::True Story:::My grandfather was buried with a Jeter Jersey and a Yankees ball cap!

Favorite Jets player ever- Al Toon WR- Who is your favorite all time Pat?
08-21-2009, 12:06 PM   #25
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[QUOTE=misscris]hey Jerman, I'm just catching up on all this stuff. Good to hear that your plague is clearing up. Sorry to hear that it's still just frustration after frustration with no answer. I'm not personally going through that, but I know a few who are and it sucks. Please, vent away! [/QUOTE


Thanks for the kind words Cris, it has been a real struggle. I hope all is going well for you. You were the very first person to talk to me on this wonderful forum. I am always amazed at how caring and helpful people are here.
08-21-2009, 12:12 PM   #26
Jerman
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Lisa5326 said:
It sounds like they are taking your rear end much more seriously, good job Jerman! And yes please vent/let us know what is going on as things proceed.

Good to hear your bum is feeling a bit better
Thanks very much Lisa, the road ahead looks rocky, going to be working with dermatology, hematology, and oncology as well as the gastro docs. I know that I have a lot more battling ahead but once they came put a name to it, at least i will know what i am up against.
08-21-2009, 12:30 PM   #27
fenway1971
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Jerman said:
Hey Fenway, that is a tough price to pay for the bet.
Yes, I am sooooo ready for some football!!! I am a absolute fanatic when it comes to football. One of my earliest childhood memories is watching Broadway Joe and the boys stick it to the Colts in Superbowl III. Unfortunately, and sadly ironic is of course the fact that they have not been to the big game since.

Growing up my family lived Pennsylvania, both upstate and downstate New York, Connecticut, and finally near the Cape in Mass. As a result I have a few teams which I always have pledged blind allegiance to. In Baseball, I love the Red Sox, and the Phillies ( Mike Schmidt --favorite player) but will also root for the Pitt Pirates (remember Pops Stargell, Dave Parker?), as well as the Cinncinati Reds (Bench, Conception (sp) )who i root for always. I was a fan of the Yankmees for years as a kid, as my grandfather LOVED them. I stopped watching baseball for several years when Munson was killed, and started years later after moving to CT. to root for the Red Sox (JIM Rice).

When it comes to the Jets though, there is no substitute, every year I can convince myself that they have a good shot at the prize.. Late in the season I dont stop pulling for them until they are "mathematically" eliminated. I even watch the entire NFL draft with at least two draft books on the table in front of me.

So...same question back at ya, how can you live in New York and root for Belicheks Cheatin swinebags? (uh no offense to you kind sir).

:::True Story:::My grandfather was buried with a Jeter Jersey and a Yankees ball cap!

Favorite Jets player ever- Al Toon WR- Who is your favorite all time Pat?
We are now best friends even though we root for mortal enemies.

I think we're about the same generation. I grew up in central mass and the cape, hence my allegiance to Sox and Pats. Diehard fan of both even in their unglory years - and there were many during my childhood.

Tough question you pose. I always liked Steve Grogan - wore his jersey as a kid. Also, a huge fan of Troy Brown - consummate "just tell me where to play coach and I'll do it" player.

Are you in a fantasy league? I'm in one - our draft is next week.
08-21-2009, 01:38 PM   #28
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Jerman said:
Thanks very much Lisa, the road ahead looks rocky, going to be working with dermatology, hematology, and oncology as well as the gastro docs. I know that I have a lot more battling ahead but once they came put a name to it, at least i will know what i am up against.
How's the bum feeling today? Any better from their recent 'massage'?

Yeah it does sound pretty intense...why do they want you to talk to oncology? This is regarding the skin issue right? And are they convinced that the skin problem is related to the gastro issues?

Take care Jerman!
08-24-2009, 07:19 PM   #29
Jerman
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fenway1971 said:
We are now best friends even though we root for mortal enemies.

I think we're about the same generation. I grew up in central mass and the cape, hence my allegiance to Sox and Pats. Diehard fan of both even in their unglory years - and there were many during my childhood.

Tough question you pose. I always liked Steve Grogan - wore his jersey as a kid. Also, a huge fan of Troy Brown - consummate "just tell me where to play coach and I'll do it" player.

Are you in a fantasy league? I'm in one - our draft is next week.

We are pals despite the fact that you root for that swiney little hobbit bellichump, I will hold out hope that you will someday leave the dark side and hop aboard the JETS bandwagon!! ( Uh there is lots of room!)

Steve Grogan huh? If memory serves me right he was known as the "Jet Killer" and he certainly seemed to have some of his best games against the Gotham Green. That guy was tough as nails in my opinion only surpassed in that category by Phil Simms and Brett (should I stay or should I go now) Farve.

As far as Troy Brown goes....just amazing the kind of player l LOVE TO WATCH! He was a bit like our Wayne Chrebet small in stature but a whole lot of heart!!

I also really liked Ken O'Brien (yep the guy we took ahead of Marino) for his toughness, I think he broke the sacks record afew times.

I love Fantasy Football, hoping to do a league with my three boys. Wife won't do it anymore since we all busted her chops for picking Adam Vinatieri with the first overall pick! We should maybe do a league in here, what do you think?

How about your least favorite Pat? The Jet whom I despised for years is Mark Gastineau, poor sportsman, dancing sissy, quitting on the team bag of dung.
08-24-2009, 08:14 PM   #30
Jerman
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Lisa5326 said:
How's the bum feeling today? Any better from their recent 'massage'?

Yeah it does sound pretty intense...why do they want you to talk to oncology? This is regarding the skin issue right? And are they convinced that the skin problem is related to the gastro issues?

Take care Jerman!
Hiya Lisa, It seems as though the creams are working, as the "Great Ass Plague of 2009" seems to be in retreat mode.

I guess that they are wanting me to talk to Oncology because they just do not know what it is. One of the only things that has turned up on any test is the high white blood cell count. They have given me a 95% guarantee that i do not have crohns or colitis. I have not heard anything back yet on the porphirias (sp) Thanks Lisa.
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