Not sure I'll be welcomed here

[skeet]

I was shut out of a similar forum at another site a few years ago because I do not have Crohns or IBD. I DO have a condition called shortened (or short) bowel syndrome, which presents many of the same symptoms. I had a ruptured bowel twelve years ago. Mis-diagnosis in the emergency room resulted in a delay of many hours before I was taken in to surgery. By the time they opened me up I had a belly full of necrotic tissue. The surgeon removed "something in excess of two feet" of bowel (hard to measure under those circumstances.) I "died" in ICU the following day, was revived and maintained in a coma for thirteen days. My llife has been a living hell ever since, to the point that I sometimes wish they had never revived me. I have fulminating (explosive liquid) diarrhea, all day every day. Cholestyramine slows things down enough for me to absorb some of what I eat. My diet consists mostly of starches, as I can't digest fats at all and have terrible results from fibrous fruits and veggies. Eating and moving around frequently cause me to spew without warning. This means I can't eat when I'm working. I eat a slice of dry toast every morning, then have to go without food until I am through in the field, one or two in the afternoon on a good day. I nibble on crackers or plain cookies if I feel like I'm getting weak from hunger, but sometimes even a single cracker is enough to stimulate explosive reults.

That's me in a nutshell. I'd like to be able to talk to others about diet, medical coverage (I have none,) social insecurites and all the messiness that comes with such a disordered life. Is this the place?

 

[Kate]

Hey Skeet

I cant speak for everyone here but as far as i am concerned you are more tyhen welcome here. The way i figger it is if you need support then you welcome. I hope that this forum can help you in some way.

All the Best
Kate

 

[skeet]

Thank you, Kate. Hope you're having a good day!

 

[Jeff D.]

Hey Skeet I feel so bad...Hugs

Have you gone for disability coverage, then you will not have to work and you can focus more about your diet and how to fix your life. Are you depressed or feel as of you have anxiety because I remember when I was depressed and I had a lot of thoughts about why not just die and stuff like that.

Best of luck

 

[Skinsfan1229]

I just have a min. But How did the rest of your bowel get removed, you mentioned 2 feet, but what about the rest?

Your certainly welcome here, and I hope to see you stick around.

This site isnt all political either, like some other sites, its a really nice supportive atmostphere.

I've had my colon removed and some of my small bowel also, I have an illiostomy, I assume you do to? So your on TPN right? I have a lot of experience with hospital stays and procedures and surgeries if you'd like to contact me my email is [email protected] and I have aim which is Skinsfan1229, and on messenger its [email protected].

Look forward to hearing from you.

By the way my name is Chris

 

[skeet]

Thanks, Jeff. My mental state is reasonably stable these days. I have chronic depression, which was diagnosed long before I became ill. I was in couseling for a number of years and was on Prozac. I lost my medical coverage shortly after the company I was working for went out of business. I started my own business. It will never make me rich, but I make enough that I don't qualify for any of the programs offering medical coverage or assistance with medical expenses. No one will allow me to purchase my own coverage because of my pre-existing conditons (my bowel problems and depression.) I'm not suicidal, though there are many days when I just wish I could go to sleep and never wake up. The primary symtom of my depression is lethargy. I just don't do much of anything that I don't positively have to do. I want to do many things, like work on my house (it's in a half-done state of remodel) and even ordinary housework, organizing my office and putting together a campaign to recruit new clients. I wake up each day in a determined state of mind: today I'm going to get my office files in order or today is the day I'll finally start painting the living room. The enthusiasm wears off quickly and I spend yet another day sitting on the couch or at my computer, accomplishing little and despising myself for it.

My son has asked me many times to quit working and come live with him. That may be in my future, but I'll put it off as long as I can. He makes a good living, but I don't want to suck him dry. He'd like to marry some day and have kids. The thought of putting a financial burden on those dreams is depressing and just unacceptable. I took care of my mother during her last year with cancer. Years late I moved my dad in with me. His care quickly became a full-time occupation. After he died I had to declare bankruptcy. My siblings had pledged to help out with expenses when I had to quit working to take care of him, but never came across. I started my business and was able to pay off the bankruptcy (chapter 13) early, saving my house. That whole experience is just too painful for me to consider allowing my son to support me until every other option is exhausted.

I also have a problem with anxiety, but I've learned to keep it under reasonable control with meditation and focused thought patterns. The diagnosis there is PTSD, relating to the whole medical crisis/coma experience. Turns out the drugs they use to maintain a coma frequently cause such things. Knowing the cause was helpful in getting it under control. I recite little matras to myself: your breathing is fine, you're just anxious; that siren is not YOUR ambulance, it's just a reminder to ask for blessings for someone else. I have a yoga tape that I keep meaning to try (there's that pesky loss of motivation again!) as I've heard from many people that it also has a calming effect.

Thanks again for your concern, Jeff. Today I don't especially want to die, though I'm so nauseous that it feels like I could. I think I'll go lie down until it subsides! :0)

 

[mikeyarmo]

This is the place

Hey Skeet

as far as i am concerned you are more then welcome here.

I couldn't have said it better myself.

Welcome Skeet. You have definately undergone quite the ordeal and I think you would make a wonderful addition to our family.

Short Bowel Syndrome can affect some with IBD, as the constant need for resections can reduce the length of bowel until there is very little remaining.

Who are we to say you can not join us? You definately must be a strong person and I know we can all benefit from your inclusion here.

Have you looked into some sort of TPN or eternal nutrition? They could probably formulate it to meet your needs, but that can provide you with the nutrients you need without the worry of vomiting or pain in digestion. It can be expensive though, but I think if you speak with your doctor/hospital the company who makes the product may be able to cover some of the costs or help you figure out other ways to. Also contanct a local IBD organization and see what they can recommend in that area.

Once again you are more than welcome to join us and I am glad you had the courage to post here.

 

[Jeff D.]

Skeet I am happy you are not feeling depressed today. Like I said before I remember it far to well. I wish you all of the best and sorry I did not welcome you before.

 

[skeet]

Aloha Chris. (Is it okay to go back to my usual greeting, now that we all know each other?) I still have the rest of my bowel. The Short Bowel Syndrome diagnosis came about eighteen months after the surgery, when the diarrhea didn't go away. The GI doc concluded from that symptom that the length of bowel removed must have exceeded two feet. I don't have an illiostomy. Not sure what TPN is, but I guess that makes the answer "no," LOL.

Aloha, mikeyarmo. I think it was your link that lead me here. Did you post to my friend TW on her blog, Tummy Troubles, a few days ago? She had her surgery for removal of her "mystery bump" on Friday. Stayed in the hospital an extra day because her blood pressure was down, but is home now & contiuing to recover. No word yet on biopsy.

I don't have any regular access to doctors. I go to a walk-in clinic once a year to get a fresh RX for my cholestyramine, but otherwise have had no GI care for about seven years. they never examine me, but take my word for it as to what I need. They always advise me to see my PCP or GI doc, then write me a year's worth of RX. I could afford a regular clinic visit, but what would be the point? They would naturally recommend various labs and tests that are way too high-priced to do without insurance. I know it would be a good thing to have my medical history udated and see if perhaps there's something else I could take that would give me real control, but it's just not possible.

Today continues to be not so nice. Nausea is a background to most days for me, but it's especially fierce and tenacious today. I ate a little stewed chicken & rice a while ago & am hoping having a little food in my belly will help with that. I'm also having an allergic reaction to something that BIT me while I was laying down (the nerve!) Maybe a mosquito or spider. I've taken benedryl so as not to claw my skin off.

By the way, since we're becoming acquainted here: female, 54, pest control (shame on my for having a critter in my bedroom!) living and working in Hawaii. Only son (35/single) moved away a few years ago and works in a casino in California. Despite what I've previously posted, my life is pretty good, but I'm glad to have found someone besides my dogs to whine with!

Mahalo nui loa (thank you very much) to all of you for the warm welcome. I'll try my best to deserve it!

Oops and Duh! Edited to add my name, since y'all were kind enough to share yours: I'm Anita

 

[Jeff D.]

Have you ever tried to get disability because if you are worried about money then maybe that could help you. Also maybe try to find out what you need to be healthy and talk to the company that makes it. Often times they will help you out. I have heard that some companies will give your prescription for free if you need it and cant pay for it.

Good luck

 

[skeet]

I don't qualify for disability because I'm able to hold a job, albeit with shortened days & some restrictions. I'm in a terrible financial bind right now because the real estate market in Hawaii slowed to a crawl & all of my work is dependent on that market (I do termite inspecitons for real estate transactions.) Once things pick up I'm hoping to join a national business association that would qualify me for group insurance. That seems to be happening now, as I've had a lot more work in recent weeks than I had had for quite some time. When/if I get some kind of medical coverage I'll be able to get an updated GI workup and find out what I need to be taking/doing/eating. That would be the time to start finding out about any assistance programs available. The cholestyramine I take is about $240 for a one month supply. Needless to say, I don't take it unless I HAVE to go out. It's unpleasant anyway, causing nausea, bloating, cramps & gassiness (though much of that comes from the disease itself.) On the days that I don't have any jobs, I don't take the stuff ... just spend a lot of time racing for the bathroom, LOL.

 

[Kate]

Gees i am lucky to live in a country where health care can be hugely susidised or free even if the wait is big (hense the reason i go private) skeet is there no one who can help you financaly to look after your health cause it is important without it there is no you. I hope you can find the help you need but i cant give advise there being from new zealand and all. But do get some tests done cause if they can help you more now it would maybe mean that you could do longer hours and there for afford morehealth care its a win win situation. is there truly no help in the us for those who cant afford health treatment when they have a cronic condition???????


I hope you can get the help you are after

All the best
Kate

 

[skeet]

Sure, there's plenty of help for those without insurance in the state of Hawaii. There's a state-paid program called Quest that I was on when I was getting unemployment & when I was taking care of my father twenty-four/seven. It cuts off if you make more than $1300 per month. That's not even enough to pay housing and food in Hawaii, never mind utilities and other necessities (and I bought my house out of foreclosure and have a very low note.) I make more than that, I'm just not rich enough to pay the preposterous prices now attached to health care. It's a very frustrating situation. I'm pinning all my hopes on this resurgence in business, and in lessons learned from poor money management when I was making pretty good money two and three years ago. My house is an old fixer-upper. I put on a new roof & did some major remodel work, thinking I would finish that before I committed money to a steep monthly insurance plan. I was totally unprepared when the bottom fell out of business. I'll know better next time. My priorities have shifted to health care first once I'm able to rebuild my bank account.

 

[GNC Crohn's Man]

I hope things work out well for you... I'm 22 I've lived with crohn's for 9 years... I would say 7 of those years it has been active... Some days are good, some days are days, and some days are just plain hell... Best thing to be doing is what your doing right now and that is making a plan to get your life back together....

That is what I have been doing since I moved down here to go to college... The plan has changed but the goal is the same. Become finacially and medically stable... I have been having some problems this past whole year.... These past 7 months I haven't been able to work more than a few hours here or their... I had some money saved up now that is gone and I'm just in minor debt... Minior debt to me is me not having a balance of $0.00 on all of my credit cards every month...

I owe maybe $700 in total that I don't have the money for.... I can make min payments for a bit and still be ok... My parents pay for my insurance, truck, student loans, rent, welll everything right now until I can get back to work....

Hopefully I will go back to work with a raise and benefits after not beign there for so long (gotta love corp drama)... While doing the same things I have always done...

As far as me being sick.... No it's not just the crohn's its mainly getting off of the medcine that they have me on (60 mg of prednsione now taken 30mg every 12 hours)... That much corticosteriods ughhhhh.... I basicly look and act like a druggie at my house.... I'm hyper for a bit, I pace a lot, I repeat myself, I forget things, I get up hyper than tired, shacky hands you name it.... That's what happens your body is being pumped full of stress (corticosteriods) and antianxeity meds (vallium based) all day long... Their is never a break.... You just have to keep building up the atavan until you pass out if you want to sleep.... But then you have to make sure you don't sleep to long or your gonna miss the prednsisone and if you miss that then anything can happen... That's what happened to me yesterday I missed my morning prednsione dosage... I had my pills out and everything.. I had them written down on my list... I just never remembered to take the pills...

Ok I'm done ranting its time to do some research on all these old meds I found and see if their any good for anything...

Ok take it is easy as possible without going insane of boredom,

Cya later

Daniel

 

[skeet]

Aloha Daniel. Hope today is a better day for you. Yep, havig a plan is good. I'm terribly disorganized, so if I don't plot things out in advance there's no telling what will happen, LOL.

Happy Monday,

anita

 

[Jonny]

Hi Skeet welcome to the forums happy monday to you

 

[Kev]

Welcome to the forum anita (or do you prefer skeet?) You work in pest control yet use 'skeet' for a nickname? Short for 'mosquito?? If so, then anyone with a sense of humour like that is going to be a fine contribution to this site... Anyway, I dunno nothing about short bowel syndrome, although I was warned by a doc I might suffer from it after my last operation (had about 1 1/2 ft of colon removed). Guess I lucked out (so far). Sorry to hear that you've got it. I can't offer advice on meds/treatment, etc., but as for depression... Think sometimes we just HAVE to reverse the image of ourselves we see when we get depressed. Take life in a lot of really tiny baby steps. Don't get down on ourselves for things we've failed to do in our grandiose plans... instead applaud/reward ourselves for the things we have done.. It's a mindset... you have to force yourself to see the glass as half full, not half empty. And don't judge yourself against what you could/used to do before you became ill. You wouldn't treat someone you loved like that, so why do it to yourself.. OK, so you've got a list of things you want to get done, and it's not getting done... Start over. Revise the list.. Break it down into smaller, easier tasks. Get one of them done, Note & congratulate yourself on the accomplishment
Then go on to number two. Don't set timelines... Bathroom duty cuts into the best laid plans. (been there, done that - got soooo depressed when the bathroom
controlled my life - THEN I accepted it, and revised my thinking & self expectations)
It sounds so basic, so elementary, so trite. BUT it really isn't. You just have to get
it into your head, and your lifestyle, that acknowledging your accomplishments has a more beneficial affect on life than accentuating any of your shortcomings. OK

 

[Skinsfan1229]

I recieve disability for my crohns, and I started recieving it while holding a job of atelast 50 hours a week.

I'm confused a little, Were you born without the normal length of intestines? because how would the GI not know how much you have? Am I just making this harder then normal and not realizing what i'm saying?

 

[skeet]

Aloha Kev, and thanks for the welcome. I'll answer to either skeet or anita ... they both come from the same source, actually. My double-handle name is Anita Bess, and, being Southern, it was used that way throughout my youth (and still, by certain aunts, LOL.) Many of my country cousins pronounced me Neeter Bess. Older brother, who was a terrible tease, turned that into skeeterbess, which is the name I use most frequently online. It's kind of a memorial to him, as he died a few years back. Skeet is shorter to type and was "available" here (most sites already have a skeet by the time I arrive.) So it's just coincidence that I came into pest control with the nickname already lurking in my background, but I do indeed apprecaite the humor. My own sense of humor is a bit bent, so y'all don't hesitate to slap me down if I get out of line. :ylol:

I do know all of those things about my psychological state. I seem to have a short in transmission when it comes to sending my good intentions from the brain to the muscles. I'm working on it. Unfinished project, for sure.

Skinsfan, I was born with a normal bowel. The reason no one is positive how much was removed is this. When my bowel ruptured it was quite a few hours before they did a scan, discovered a belly full of free liquid and decided to do exploratory surgery to see what was going on. When they opened me up my entire abdominal cavity was filled with a soup of necrotic tissue, bowel content, blood and other nasties. It was not possible to measure the actual bowel length that was removed, because much of it was mush and indistinguishable from the other "soup." They "thought" it was only a small section of bowel until time passed and normal bowel function didn't return. I guess they didn't pull out and measure what was left in place, but don't know if that would have been normal procedure.

The next question will be "why did it happen?" Don't know. I had had three emergency room visits for accute abdominal pain over a two month period before it happened. They initially thought kidney stones. Did tests, ruled that out. Gall bladder; did tests, ruled it out. Next up was a GI series, which was already scheduled when the rupture happened. It's possible that I had scar tissue adhering to my gut from a laproscopic hysterectomy which had been done two years before. Maybe they nicked my guts while they were doing that, and the scar tissue caused a stricture and then ulceration. I've never gotten a "real" explanation, only speculation. That made me crazy the first few years, because I was afraid there might be an ongoing cause & it would all happen again. I've made my peace with that now, since there can't be an answer.

Whew! I feel like this site has opened up a pressure valve & let my whole sordid story come spewing out. Mahalo for listening!:ybiggrin:

 

[Skinsfan1229]

Oh I'm completly sorry.

I've had my bowel porforate, actually this past May. Mine was also not found until they think days later. They think it was inflammed at my illieum, very close to my stoma (ostomy site), and I had taken the pill capsule camera (M2A study), they believe the M2A study might have gotten caught in the inflammation and in turn they went to dialate the area, and it was so lacerated and inflammed that they believe the scope air blew a hole in my bowel.

I guess I was assuming that they would actually go about finding out how much bowel you have by measuring, but I guess not. I guess they would just determine by how much they take out, which in turn makes it hard to measure what you have gotten taken out. I do know that when the crohns moved to my small bowel it was in jan, and it was completely throughout the entire small bowel but they only took 11cm, they took so little because if they took parts that didnt look so good i woudlnt have anything.

 

[xrayzerase]

hi skeet
just wanted to say welcome
i am new here ..i was diagnosed (3 weeks ago) with crohn's-but i also have a few other physical problems -and i am beginning to wonder how they all relate.
anyway-put it this way: mikeyarmo told me/invited me to this group (via lj)-and-already i feel i have learned so much in ways of diet and so much else-and well..i guess like you can already tell: there is a lot of knowledge and support here
so..just : welcome from me too
andrea

 

[Kev]

Hey Skeet... Geeeze, don't I get awfully 'preachy' at times? Maybe I should practice what I preach? Or at least pass around the collection plate and offer to split it with you... Anyways, u hail from down south, then decided you needed a change of climate, and moved to Hawaii... Listen, there'll be no slapping down on this site... way I figure it, life has pretty much kicked the cr@p out of us already..

Now, not to offend my southern neighbours, but isn't the US of A the lawsuit capitol of the world? Have you explored whether any of those suit happy lawyers may think you've got a case? I mean, u wouldn't want those doctors to be paying malpractice insurance fees for nothing, would you? Just a thought, from a halfwit!!

 

[skeet]

Aloha, Kev & mahalo for your input. Naw, not preachy, just sharing. :ylol2:

Sorry to take so long before getting back to you. I had NO internet connection for the last week, and a lousy connection for the week before that. Cable guy finally came today & got me up and running. I'll be switching to DSL sometime real soon, as there's no excuse for them making an appointment for ten days after my problem failed to correct with phone tech help. I'm so over dealing with the only cable provider on the island.

I'm not the type who would sue at the drop of a hat. If I KNEW that they had screwed up, maybe. I never even saw my medical records 'til almost two years after the whole thing happened. I filed for disability (stress/depression) as the company I was working for was going out of business (long story that you don't want to hear.) They had to send me everything that they sent to the insurance company that was fighting the disability claim. Found out a number of disturbing things at that time, not the least of which was this: I remembered reporting to hospital personnel that I had been assaulted (raped) the day after my surgery. I decided, after the fact, that that had been part of the drug-induced paranoid reaction. I didn't remember being raped - just remembered reporting it. Well, the medical records include that, plus some evidence that it DID happen. I discussed that with the lawyer for the disability claim & his office decided that it would be too hard to prove because I didn't remember the incident itself and because later that day I was put into a thirteen day coma, so my memory & perceptions were horrible screwed up.

If I can't prove that, I can't imagine how I can prove that they screwed up in other ways. The records reflect diligent care and there's not much hope of arguing with that. <shrug> It's been twelve years. I don't want to go back to those bleak days.

 

[Kev]

Hey Skeet... Wasn't really serious anyway... except about me being a 'halfwit'. As I always say "Well, at least I'm halfway there" OR "Half a wit is better than none" ;-)

Let me tell you a lil something, something about Insurance company doctors. My 'ex' employer sent me to see one (wanted confirmation of the dx I'd received from the 2 best GI's in the area - I'd seen both for confirmation and second opinions as SOP). Apparently he is on retainer with Insurance company, as the lowest contract bidder for the job... I was told to report to his office, where I literally sat for hours until he got around to me, DESPITE the fact that I was both in physical agony AND mortified by the sounds & smells emanating from me while sitting someplace public Eventually he saw fit to see me. He didn't do a single exam, hardly even spoke to me. He just reviewed copies of the reports from the hospitals, the 2 GI's I'd been to, and from my GP. His conclusion? They had all mis-diagnosed me, and that all I had was a lil IBS... Some OTC medicine and as far as he was concerned I was fit to return to work... That was his expert conclusion after 5 minutes of reading the files... Or should I say scanning. Needless to say, I was really shaken by what he said. It almost caused me to lose confidence in what the other doctors had said. If the Insurance company had accepted his 'expert' opinion at face value, they may have cut off my benefits... But they didn't. Don't know whether they were being generous, or that my GI's are the best there is, and hospitals here don't give just anyone surgery..., esp. not more than once. Think it was the latter, not the former

Long story short... my employer let me go... Well, I'd been off work for a long time, and had no ETA as to when I'd be well enuff to return to work. Think the 'experts' opinion may have caused them to wonder if I was really interested in keeping my job... (I mean, some folks around sick people have no patience; like they feel you can snap your fingers and magically heal on command, or just snap out of it...etc..)

Spoke with some lawyers, wondered if I could get someone to do something about this so called quack... He hadn't done anything illegal, or even unethical.. He just gave an opinion based upon his interpretation of the reports.. Not even the Dr's association (Medical Society) could slap his wrists... He hadn't broken the code.. since he hadn't examined me, just given a very far fetched interpretation of my possible illness. So I had little recourse EXCEPT to go back to all of the GI's AND my GP. Told them I now had very serious reservations about their diagnosis. When they asked why, I told them that Dr So & So, my company's insurance doc, had concluded that their diagnosis was a mistake. They all reassured me that their diagnosis was sound, and that they would speak to Dr S & S about it ASAP..

Some might see my behaviour as petty, or petty revenge, or a waste of good docs time. I don't (I'll admit I'm biased)... BUT, that quack with his rubber stamp, profit based form of medicine directly and indirectly added great stress to my life, per se. He had me questioning my own doctors & their advice/treatment, whether or not I was seriously ill or could just forget about it, plus factored in the loss of my career. Now, whether they knew it before or not, these very respected members of local medical practitioners KNOW that this quack is a quack WHO will say anything that an insurance company might want to hear FOR A PRICE, even if the insurance co. itself chooses not to believe him. Now, I'm sure doctors gossip in their off hours, (I dated a doctor + a couple of nurses, got to know quite a bit about life from the other side) so I relish in the thought that, well, what goes around, comes around, even for Doctors. Especially 'QUACK' doctors...
__________________

 

[skeet]

Insurance doctors are scarey and way too powerful. The one who reviewed my case for the disability claim made me take a whole slew of psych tests (because it was for work-related stress.) He made a big deal in the file about the fact that I took off my thumb spline to write. The brace is quite rigid and one cannot hold a pen while wearing it. I'm very much NOT ambidextrious. It's well documented that I have De Quervain's. That was not an issue in the claim he was considering, but he was implying that I was faking it. He didn't bother to note that I failed the timed tests because my hand was so painful and swollen I couldn barley write.

I prevailed on that claim, getting eighteen months of full disability.

 

[skeet]

This is a test to see if my profile pic will show up.

 

[flying4frogs]

It may be late but welcome skeet.

I also suffer from short bowel syndrome (had a foot or so of small bowel removed). Questrin (Chorlestrimine) is my god send. It works wonders for me.

I am sorry to hear about your troubles insurance wise. I am luck as the company I work for has good insurance and Canada has pretty good universal medical. (OK, fellow canadians, you can giggle...;-) )

Anyways, welcome and I wish you better health.

Nelson

 

[cookey]

Hey Skeet, WOW I have been away a little to long. Welcome Welcome to our Crohns Forum. Of course you would be welcome here, anything bowel related plays a part here, right folks? Gosh Skeet you have certainly had your share. You sound like an amazing, and very strong individual...I"m happy you have decided to join, and I most certainly look forward to knowing you better. Holla at me any time.

For now, Biggest Hugs imaginable.
Cookey*

 

[skeet]

And THIS is what community forum is all about! I had a long, rough, crappy day. Clicked in here and find greetings that feel as warm and friendly as a hug. Mahalo, my friends!