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Ugh

M

Methofelis

Guest
God this has been a weird few weeks. From having the PVCs and landing in the hospital to my boyfriend having testicular cancer.

Now, I can't eat.

I keep trying to ... but I can't eat much at a time at all. I feel like there is a lump in my throat, too.

I am hoping for the best with I go to the GI on the 1st. I am full of anxiety over this.
To the point that I'm hoping the 1st won't be too far off for me. :(

I'm nervous. I've lost weight, I've had the runs for two weeks, and I can not eat much at all. I cut out dairy (seemed to make me worse) but I STILL can't eat much.

I don't know what to do.

I've been taking Mylanta, which seems to help, but it isn't enough. I'm crawling out my my skin, here. I'm terribly afraid of it being worse than it is, and I have no clue why. This anxiety has to stop.
 
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Kev

Senior Member
Fear! It's a wicked thing. Can eat away at you slowly, or take great big chunks.
What is it good for... Absolutely nothing, say it again.. Wait a mo.. It does help to motivate us to go for tests, see a doctor, take our meds, watch our diet, etc..
But, when fear is constant, it can cripple a person. That's when its time to turn fear into anger. Get angry at the disease... get angry at the system.. even get angry at oneself... if there are things one hasn't done... procrastinated over. I dunno. You've cut out dairy... but are you on a regimented diet? Taking your meds, exercising... getting your rest? Even if you haven't, maybe a start for you is to shortlist the things you haven't done yet.. between now and the 1st. Then discuss them with your GI. I can tell you, doing something, anything, is a better plan than doing nothing but letting anxiety and fear tear you up inside.
 
M

Methofelis

Guest
I know ... I know I'm being irrational.
It's terrible.

I have not been to a GI in YEARS ... since I was six years old, in fact. I was only truly diagnosed this year, so...
Never had a plan. Never had meds aside from what the emergency room gave me.

I have been walking more. I have been sleeping more.

I don't even know how to properly work my diet. (and damn, I want some vodka. :( )

I feel like I'm going nuts. This is stupid.

Thanks, Kev. I know I'm letting it get the best of me. I'm trying not to.
 
For a diet I would for one go see a diatition that has experience with people with intestinal problems. Also, make a journal about what foods you eat cause you problems and what foods don't bother you. If you have any questions you can ask them here. I wouldn't drink the vodka if I was you as it could really hurt your intestinal tract, it's like pouring gasoline down your intestines. Also try to take your mind to a different place, I know it's hard but try. Good luck
 
try a juicer. I did and i started on grape juice it seemed the least bothersome. Jack LaLanne juicers are awesome, you can put a whole small apple in it. i just got mine a little while ago and i can notice the differance. do the research

molly
 
hi methofelis - this i can completely identify with, as i've had exactly the thing you're talking about. to the extent in fact that i drove myself down to A&E in a mad panic years ago, and refused to budge until someone had a good look down my throat.

i also felt that i couldnt eat, even drinking was uncomfortable, and it affected my voice, made it husky. the weird thing was, although i was prone to panic attacks at the time, i didnt feel panicky, or particularly anxious, i was just worried.

i smoke, and convinced myself i had throat cancer. so although i was showing no other signs of anxiety, i was in a very frightened state.

its called globus hystericus, and it is a spasming of the muscles in your throat, which give you the feeling that there is something there, but in fact there isnt. its just a sensation.

two things helped me overcome it. first, the reassurance that it was nothing serious, and the explanation as to what it was. secondly, relaxation exercises, incorporating deep steady breathing (while lying down) and consciously relaxing every part of my body from toes upwards.

i hope this gives you some comfort, and i hope it settles soon.
 
M

Methofelis

Guest
Thanks guys. I will have to see a dietitian .. and probably get a juicer. And all I wanted was some pizza! I guess pizza is not for me anymore...

Dingbat: I know I'm having some nasty anxiety issues. I also thought "Cancer!" right away ... until I realized it got worse when I was upset ... and with post-nasal drip.

I'm afraid of anxiety and some drip ... makes me feel a bit silly.

Still counting down the days till the doctor ....
 
aw dont feel silly, anxiety is a horrid thing, and so hard to overcome when it's bad.

i remember feeling angry at myself when i was having panic attacks, was really cross that something so 'little' as anxiety could make me feel so bad, and affect my life to that extent. but that passed, and so did the panic/anxiety. you'll get there, just keep in mind the relaxation thing - it really does help.
 
M

Methofelis

Guest
dingbat said:
aw dont feel silly, anxiety is a horrid thing, and so hard to overcome when it's bad.

i remember feeling angry at myself when i was having panic attacks, was really cross that something so 'little' as anxiety could make me feel so bad, and affect my life to that extent. but that passed, and so did the panic/anxiety. you'll get there, just keep in mind the relaxation thing - it really does help.

When I go to the GI I'm going to have to ask him to recommend some kind of help for my anxiety. I am having a hard time battling it right now.

I'm going to look into more relaxation techniques, yes. Before I make myself worse.
 

Kev

Senior Member
Sounds like a good plan. Fear, anxiety, depression, these all seem to crop up with IBD sooner or later. Some folks, esp if they aren't in our shoes; or even if they are just new to this themselves... may feel that these things can be battled without a prescription from a doctor. That may be the case IF one is perfectly healthy, but if you are fighting an incurable disease... then I figure it's only fair to get all the help you can. IBD don't play fair, .. like, it creates fear, then it turns around and feeds off it. So, if a doc can give one something that makes them feel better emotionaly, psychologically, then I for one say hurray!

Dependancy... well, that's another matter... You can watch out for it, deal with it IF it becomes a problem... Thing of it is, usually this disease gets a little shy when a person starts to feel better. And, when you start to feel better, fear is no longer your constant companion. Well, you can see where I'm going with this.... I mean, its not guarranteed, but as a rule of thumb, it's pretty good...
 
Anxiety can be caused by a Magnesium deficiency. Since supplementing with Mg is not a risky proposition, it may be a good first thing to try.

Given that our condition can lead to many deficiencies, I would not be surprised if this could help many people with IBD that have anxiety problems.

It is supposed to help some forms of depression also.

Do not over do it. It will cause loose stool is you take high doses of it.

I have been taking a little extra lately, just because my wife is using it to combat her Lyme disease and we have it on hand.

Dan
 
M

Methofelis

Guest
Dependency is something I fear as well. I do not wish to rely on drugs for the rest of my life ... but with Crohn's, I suppose I have little choice anyway.

I will see what the doctor has to say on the first ... hopefully he will be able to assuage my fears to an extent, or even provide me with something that will.

You are right, Kev ... other people assume it can just be willed away. Well, it can't. But we know that one, don't we? Seventeen years I've been ill ... nobody can tell me that anxiety can just be forgotten anymore.

... As to the magnesium: I have been taking magnesium, CoQ10, selenium, some potassium, a mixed B supplement and flax seed oils. It seems to be helping on other fronts, but not the anxiety so much.

I have been taking too much Mylanta though ... I feel like a free-flowing river of the stuff. It's not so much fun.

I suppose it is Pred time again. :(
 
Methofelis said:
You are right, Kev ... other people assume it can just be willed away. Well, it can't. But we know that one, don't we? Seventeen years I've been ill ... nobody can tell me that anxiety can just be forgotten anymore.

exactly!

its one of those invisible illnesses.. and i've lost count the number of times people have assumed that i can just shake it off in timing with plans they have made for me to be somewhere.. as if washing my face & putting glad rags on actually helps!!!!

i mentioned elsewhere in the forum i had cognitive behaviour therapy at one point (was brilliant), and the therapist gave me a fat information pack on anxiety.. within this there was a sheet bullet-pointing exactly what the chain reaction is physically on our bodies as anxiety kicks in. not only did it make fascinating (and eye-opening) reading, it really helped me get a handle on what i was feeling - i understood, and even if i still had the anxiety, i knew what to expect and why.

getting well from anxiety issues, and controlling it, is also a chain reaction in my opinion. and if your starting point to this is meds and reassurance from a doctor, then go for it, & dont worry about dependence at this point. there has to be a day, a point at which you start your path to recovery, i hope that day comes really soon for you. oh, and did i mention relaxation? :D
 

Kev

Senior Member
Hmmm, the flax seed oil... how much are you taking? Are you having any issues with the big 'D'? Reason I ask, is before becoming ill, if my system slowed down, I used to just add a little flax seed bread to my diet. got things moving pronto!!!
 
The Magnesium likely works by making the immune system more effective. Kev brought up this possible problem with it before of boosting immune function when you are suppressing it at the same time with medications.

Is it a good idea? I do not know, but you do need magnesium for normal body functions. Mg never helped my depression either. I think because when you have Crohn's the immune function cannot be boosted enough on Mg alone. I think it just allows it to work to its potential. Our potential is not good enough.

I do think there is a strong link between Depression and Anxiety. I believe that quite often Depression is caused by inflammation. The same may be true of Anxiety. If you focus your efforts on controlling inflammation them you may help the anxiety at the same time.

This is speculative thinking and I cannot prove any of it. But controlling inflammation is a good idea for Crohn's anyway. I would look for supplements that are TNF inhibitors and try some out.

Fish or Krill Oil, Turmeric and Ginger are the ones I used, but there are others also.
They are all antibacterial also which may help with what I consider the cause of the inflammation. I do not think they are powerful enough to kill all the offending bacteria, but may help to slow it down.

This is just my own conclusions based on my experience with this disease. I may be wrong. I have been wrong before.

Dan
 
Just found this on Lymenet.

http://www.clevelandclinic.org/health/health-info/docs/0200/0217.asp?index=4857

What is inflammation?

Inflammation is a process by which the body’s white blood cells and chemicals protect us from infection and foreign substances, such as bacteria and viruses.

When inflammation occurs normally, chemicals from the body’s white blood cells are released to protect us from foreign substances. Sometimes, however, the white blood cells and their inflammatory chemicals cause damage to the body’s tissues.

-----

http://www.womentowomen.com/inflammation/naturalantiinflammatories.aspx

The anti-inflammatory diet

• Eat lots of fruits, vegetables, and wild seafood.
Despite the health benefits of fish, most species have astronomically high levels of mercury and PCB’s.

Severely limit or avoid Atlantic varieties, and only eat wild Pacific or Alaskan salmon (unless organically farm-raised).

Because toxins magnify as you go up the food chain, sardines, anchovies, and shellfish are still good choices.



Add generous portions of brightly-colored vegetables to every meal and snack for their fiber and natural anti-inflammatory compounds.

Many herbs and foods such as turmeric, oregano, garlic, green tea, blueberries, and ginger contain bioflavonoids and polyphenols that limit free radical production.

You may want to investigate the anti-inflammation diet outlined in The Perricone Promise, by Nicholas Perricone.

• Add essential fatty acids (EFA’s) to your diet.
Since it is omega-3 fatty acids that are in shortest supply in our modern diet, we recommend you take a daily EFA supplement high in omega-3’s to rebalance your diet.

This is one of the simplest yet most important steps you can take to quell chronic inflammation in your body.

In our practice we have found fish oil EFA supplements to be most effective, but if you are a vegetarian, algal sources can be used with good result.

Just be sure your EFA supplement has been tested and proven free of mercury and other heavy metals — otherwise it can do you more harm than good.



Some practitioners also recommend adding an omega-6 supplement called gamma linolenic acid, or GLA, if you have rheumatoid arthritis.

For cooking purposes our oil of choice is grapeseed oil, and for dressings it’s olive oil, which is high in oleic acid, an omega-9 with anti-inflammatory properties.

You can even have the ratio of EFA’s in your blood evaluated with an EFA profile that measures omega-3 levels versus the omega-6’s versus the omega-9’s.

Remember, when it comes to essential fats, it’s all about balance — read our articles on the truth about fat and cholesterol, the benefits of omega-3’s, the differences between omega-3’s, 6’s and 9’s and for detailed info.

• Eliminate certain foods and additives from your diet.


I know how hard it can be to avoid many of the foods that turn the body’s inflammation dial on high.

Number-one on the list of offenders would be the sugars and refined carbohydrates that women so often crave when their systems are off-balance.

Next would be the countless gluten-containing foods like wheat and corn (among others) that line supermarket shelves.

These and so many other additives and preservatives are often hidden in processed and packaged foods, making them even more difficult to avoid.

You will also need to steer clear of known allergens, and be aware of increasing food sensitivities as well. Wheat, eggs, dairy, soy and nuts are the most common dietary irritants.



To help you identify sensitivities that could be causing you problems, follow an elimination diet (avoiding a substance for two weeks, then introducing it for a day or two).

Yes, it can be difficult at first to make changes like this, but the payoff is huge — it can make a tremendous difference in how you feel in a surprisingly short period of time.

The tip away from pro-inflammatory toward anti-inflammatory can take place almost overnight for some women.


Natural anti-inflammatory supplements

• Add a high-quality daily multivitamin/mineral complex.

There are several markers in our blood, in particular C-reactive protein (CRP), that can be easily measured to give us an indication of the level of inflammation present in our bodies.

When weighed with our health history, our risk of inflammation-related diseases can be inferred from these markers of inflammation.



Even though many studies have examined the impact that vitamins such as folic acid and other B vitamins have on tissue function and inflammation markers, the role these vitamins play remains unclear.

Still, there is a clear connection between adequate blood levels of certain nutrients, getting homocysteine and CRP normalized, and lowering risk of health conditions caused by inflammation, like arthritis, cardiovascular disease and insulin resistance.

Along with folic acid, other B vitamins and EFA’s, as described above, vitamin D too has a known anti-inflammatory effect, and vitamins C and E are widely celebrated as powerful antioxidants, countering the harmful effects of free radicals.



One day we’ll have greater knowledge of how vitamins, minerals, and micronutrients work on our behalf as natural anti-inflammatories.

But what is important for us to understand now is that the damaging effects of inflammation can be prevented and reversed by making healthy dietary changes and adding certain supplements to the diet today.

Taking a good multivitamin is one of the easiest ways to ensure that your body has adequate levels of antioxidant and anti-inflammatory nutrients when it needs them most. (To learn more, read our article on health and vitamins.)


• A rainbow of anti-inflammatory botanicals


• Bioflavanoids. This is a class of over 5000 plant chemicals that our bodies metabolize in such a way that offers us strong anti-oxidant, anti-cancer, anti-allergenic and anti-inflammatory effects.

Bioflavanoids, also called flavones or flavonoids, include compounds such as quercetin, epicatechin, and oligomeric proanthocyanidins (OPC’s).

But don’t let their long names put you off; many occur abundantly in our daily food and drink — in citrus fruits, vegetables, tea, cocoa and wine, to name just a few!

Others are less well known, found less widely in nature, or still waiting to be discovered.

Most bioflavanoids can be taken in supplemental form as part of a natural anti-inflammation regimen.

Among the best for soothing the inflammatory cascade are quercetin, rutin, and procyanidins (OPC’s) such as those found in pine bark extract (Pycnogenol) and grape seed extract.



Other anti-inflammatory herbs.

Aside from the large group of bioflavanoids I’ve only touched on above, the plant kingdom has so much more to offer us in the way of compounds that quiet inflammation in our bodies.

Many of these are found in traditional medicinal herbs used for centuries in the past, yet whose specific mechanisms of action biochemists are still working to explain today.

Their study is helping to bring about a whole new range of anti-inflammatory agents that more safely and effectively target the inflammatory cascade well upstream of where conventional NSAID’s and COX-2 inhibitors cause their damaging and unwanted side effects.

Here’s just a sampling.

• Boswellia (Boswellia serrata). Also known as Indian frankincense, Boswellia serrata has long been recognized in Ayurvedic medicine for its anti-inflammatory benefits.

Today scientists studying extracts of boswellia are reporting that it can switch off key cell signalers and pro-inflammatory mediators known as cytokines in the inflammatory cascade.

• Ginger (Zingiber officinalis). Valued for centuries the world over for its medicinal qualities, ginger today is being studied by biochemists and pharmacologists interested in its analgesic, anti-inflammatory, anti-nausea and sugar-moderating effects in the body.

In the past 30 years or so their work has confirmed how ginger shares properties with conventional over-the-counter and prescription NSAID’s, in that it suppress the synthesis in the body of the pro-inflammatory molecules known as prostaglandins — except with few if any side effects.

Recently, however, an even more exciting body of work is emerging that shows how ginger extract can actually inhibit or deactivate genes in our body that encode the molecules involved in chronic inflammation.


• Turmeric (Curcuma longa), an ancient culinary spice native to South East Asia, has been used as an anti-inflammatory agent for centuries in Indian Ayurvedic medicine.

Also known as cucurmin, it is a mild COX-2 inhibitor, but works differently from the prescription-strength drugs that can increase your risk of myocardial infarction or stroke.

Like Boswellia and ginger, it seems to inhibit joint inflammation by preventing the production of prostaglandins and activation of inflammation-regulating genes through its effects on cell-signalling.


• Glucosamine–chondroitin. Glucosamine sulfate (1500–2000 mg/day, divided doses) and chondroitin sulfate (~1000 mg/day) are important building blocks in healthy cartilage. As we age, our bodies cannot create these compounds as readily.

Glucosamine–chondroitin supplements may help repair damaged tissues, but they are felt to act principally by delaying the progression of joint inflammation and alleviating its symptoms.

In other words, they may not have as strong an impact on the underlying causes of chronic inflammation as the other recommendations in this article, but you can certainly ask your healthcare provider about including them in your plan. (If you have shellfish allergies, be sure to check with your healthcare provider before taking these supplements.)
 
M

Methofelis

Guest
Tons of great info, guys. Thank you very much.

Kev ... I seem to be on a .. hm... liquid bathroom run every few hours now. Probably a mix of the flax seed and Mylanta and the fact that I think I'm having a flare start up. Bad combo. I might need to cut back the flax seed pills for a while.

Dingbat ... thank you. I have heard that CBT is a great way to go. If I could afford visits like that, I would ... but seeing the GI is going to tap me out of my cash reserves. I have no insurance. :( I've been checking out anxiety websites, though. They have been useful.

Dan, fantastic info. I'll have to try and put this to good use after I see the GI and get this flare or whatever is going on under control. Thanks so much for that page.

Only a few more days until my first GI trip since I was six years old. I'm nervous, but so, so glad to FINALLY see the right doctor. It sucks having been sick for seventeen years without knowing why and just now getting the (somewhat) proper care. I'm going to keep my fingers crossed.

By the way, anyone here a US resident that paid full price for a colonoscopy or endoscopy? I have no clue what this is going to cost. The nurse won't tell me over the phone.
 
i forget how lucky we are in the uk sometimes, to have our National Health Service. of course we do pay, with our taxes, but by the sounds of it, the tax is nothing compared to what you guys overseas have to lay out to get treatment.

the cognitive behaviour therapy was free on the NHS, and i think i was lucky again in that i had the most fantastic, patient and understanding therapist. i dont think i could have shaken my anxiety demons without him.

methofelis, good luck with your GI appointment, let us know how it goes. and if you'd like any of the info i was given/taught by my CBT therapist, pm me.
 

Kev

Senior Member
Hey Metho... Wish I could help out on the financial front... ever thought of moving to Canada? Our health care system won't pay for your meds, but everything else is pretty much covered. Like, if I had to go for a scope, my only financial outlay is to pay for parking at the hospital. All things considered, I've no reason to bitch.

Course, that doesn't help you out at all... All the best. Let us know how it goes
 
You do not have to pay full price for the procedure. The thing to remember is that almost no insurer reimburses at 100%. If you work with the billing dept, you can get one third off without too much trouble. Even more if you have the cash to put down up front.

These things are negotiable, especially if you can demonstrate you have a limited income.

Dan
 
M

Methofelis

Guest
Thanks, dingbat. I think I will ask you about that.
Edit: Dingbat, it says your PM box is full.

Kev -- I have considered moving to Canada, actually. But of course, there is the problem of needing money to do that as well. What is it, $10,000 you need to have to go there? Or, I could sneak in... mind helping me do a border jump? ;)

Dan -- I'll have to talk to them about that. See if they can work with me. The hospital won't ... apparently my boyfriend makes too much money for the household (which, in the REAL world, isn't enough) but hopefully they'll be a bit more .. hm .. lenient.

I DID discover that a guy who works at my local health store has IBD and managed to weasel into their insurance without an exam ... I buy all my food there, so if I can work for a bunch of hippies, get insurance, and get a discount on everything I buy? Might work out ... and they're good about sick time.
 
M

Methofelis

Guest
Hah ... we have a bunch of them at the organic market. You'll either find rich yuppies, art school kids or hippies there. They exist -- as stoned as ever.
 
I was charged in Oct. of 2008 $80.50 JUST for the scoping itself (not "everything" altogether) and I believe it was either 90% or 80% already covered (meaning that my $80.50 was either 10 or 20%)...the place I had it done at was not the normal one I thought I was going to, so the network/out of network was not an option as the doc was only able to do it there, I'd have to check what it was coded as.

Mathematically, that would work out to either $805.00 or $402.50, depending....

But then I had to pay for the doctor's time, etc...the doc himself charged like $50 to me (so maybe a few hundred without insurance), I wanna say?

I love how they financially delegate a dozen elements of a single procedure/issue so that you seem to even end up paying the company that made the latex on the gloves used. :ymad:
 
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Kev

Senior Member
Yeah, my Dad showed me copies of the bill he eventually got from the hospital in florida he ended up going to while on vacation there. He didn't have to pay it, it just needed his signature so the insurance company could get reimbursed by our gov't plan for that portion of the bill.. gov't plan pays the basics, insurance co. picks up the rest.. Like, his bill showed the paper sheets on the hospital bed, and his blood transfusions, and the typing N crossmatching, and his pills... and the dispensing fee for his pills... the OR staff, drs, nurses, etc.., and cleaning the OR before/after his emerg. op.. I think in total he spent 4 days in hospital... and the total of the bill was in the vicinity of $148,000 USD

If he hadn't purchased travel insurance (due to my mother health issues) HIS emergency trip to the hospital would have wiped out their retirement funds...
 
M

Methofelis

Guest
$805 or $402? Well, now I'm certain I'm screwed on that front. Ouch. :ybatty:

That doesn't surprise me at all, Kev. My last stay for three days was $8,000 ... my last big flare gave me a bill of $13,000, and the flare before that was $9,000 (for ONE DAY) ... I haven't even begun to pay any of those off. It is insane. Luckily the hospitals can't turn me away, or I'd be a dead woman.

So ... I must move to Canada, it seems! Might as well. There's some lake and an island in my last name up there. Maybe I can claim them as my kingdom. :ycool:

Oy ... now I have to help my boyfriend prep for a bone/digestive/vascular scan tomorrow thanks to his mini-cancer bout (so, so glad he works for a state college. Great insurance!). Can't people just be friggin' healthy?

On a side note, I seem to be feeling a bit better. Probably because I have eaten what a normal person eats in a day over a period of a week, but eh ...
 
M

Methofelis

Guest
Well ... saw the GI today. He has started me on Pentasa, taking six 500mg pills a day. He also expressed great displeasure and concern over the hospital being so unconcerned with me when I have gone there with a flare. He is an awesome doctor. :)

The new hurdle is trying to figure out how the heck to find the $1,115 it'll cost me to get a colonoscopy. I hate that part.

I don't want to lose this doctor -- he's very, very nice and quite relaxed. Seems genuinely concerned -- even gave me a month's worth of Pentasa for free because he knew my cash flow is quite low.

He wants me back in ASAP. He thinks I may have some damage to contend with due to my symptoms and current state. He seemed quite disturbed that I went from 135 pounds to 115 pounds in three weeks, and dropping.

Here's hoping I can figure this out soon. Wish me luck.
 

Kev

Senior Member
Well, desperate times often call for desperate measures. I read on another post (sorry, don't recall which one or where - somewhere here on the forum) about a person who was put on the insurance of a close friend (and what the nature of their relationship is I don't know either).. But, if they could do it in their part of the US, I was wondering whether or not a similar thing could be done between you and your b/f? I seem to recall you saying he had great insurance... Now, I'm not suggesting anythin illegal, any fraud or anything.. But if this other member could do it legally, then perhaps it might work in your case... Course, that might place your b/f in an awkward spot, but it 'shouldn't' hurt to suggest it.. worst case, his insurance situation won't permit it, right? Which leaves you no worse off than you are now.. I know, it really sucks to be sick AND to feel like one has to beg, borrow or steal to get medical attention. I hate it when my GI gives me my 5-ASA for free, cause she knows I can't afford them.
 
M

Methofelis

Guest
Kev said:
Well, desperate times often call for desperate measures. I read on another post (sorry, don't recall which one or where - somewhere here on the forum) about a person who was put on the insurance of a close friend (and what the nature of their relationship is I don't know either).. But, if they could do it in their part of the US, I was wondering whether or not a similar thing could be done between you and your b/f? I seem to recall you saying he had great insurance... Now, I'm not suggesting anythin illegal, any fraud or anything.. But if this other member could do it legally, then perhaps it might work in your case... Course, that might place your b/f in an awkward spot, but it 'shouldn't' hurt to suggest it.. worst case, his insurance situation won't permit it, right? Which leaves you no worse off than you are now.. I know, it really sucks to be sick AND to feel like one has to beg, borrow or steal to get medical attention. I hate it when my GI gives me my 5-ASA for free, cause she knows I can't afford them.

I read on the Pentasa website that they have a financial aid thing that people of low incomes can use. Luckily, judging by their criteria, I fit into it. I could get it free or reduced, hopefully. ... Hopefully.

We have considered me going under his insurance, but it would cost too much for us to handle. It would raise the cost to about $400 a month. We just can't do it.

Hopefully, I'll land a job with this local health place. Another guy with Crohn's managed to sneak into their insurance. Fingers crossed that I can keep that job if I get it, too.
 
That was Drew, he said an ex girlfriend was put onto his insurance for some medical issues that needed addressing. I think it was in the thread Jeff had about things, JeffD mentioned he is angry that his GI doc hundreds of miles away in CT wouldn't keep seeing him for Remicade infusions. "Oh boy" or something was the title of the thread, maybe in the support forum?
 
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Kev

Senior Member
Well, fat lot of help I was.. :-( I wonder what 'travel insurance' covers and costs? (WOW, really clutching at straws). And, no Metho, I'm not being fascetious. Have learned over the years that sometimes, unfortunately not often, when faced with a seemingly insurmountable problem, voicing ideas, ANY ideas, might provide one with a 'solution'. Some call it thinking 'outside the box'. Whenever I do it, it more resembles talking thru my hat. Now, me looking stupid is not something I'm adverse to. So, if any/all of my ideas seem stupid, I won't take offense. Hows' that saying go? 'Better to have tried N failed Vs not having tried at all'. ... Hmmm, but... if a scope procedure will cost about $1200, that's the equiv. of 3 months of being on your b/f's insurance. Can you folks commit to a qtr/yr term, or is it a minimum 1 yr term increment? Like, if one way or the other you have to come up with/shell out $1200, maybe 3 months of his insurance is a better way to spend those $$$$ Never know what else might come up in those 90 days. It's criminal, in the richest country in the world that folks don't have basic health coverage. Course, that still doesn't help you out.

Shame that folks raise money, contribute to things like Free Clinics for people with HIV/AIDS, or Drug Addiction/Treatment centres, or FamilyPlanning/Abortion clinics; but no one bothered to setup free clinics for people with incurable IBD!
 
M

Methofelis

Guest
Oh sure. If I was a pregnant lesbian with AIDS that needed help, they'd be all over me. They also have tons of things set up for our illegal Cubans and Haitians. But for me? Not so much.

First, if I joined his insurance I'd have to marry him. Second, it would take 90 days for me to be covered, and third, I'd have to be on it for a year. Nice health plan, eh?

I'm grasping at straws as much as you trying to figure this little bit out, here. The doctor is being amazingly kind about the cost by cutting his fees in half for me, so hopefully I'll be able to continue with him. I'm going to look up any other possible financial aid prospects, I suppose.

Thanks again, Kev. Your ideas are not stupid -- all are welcome. I'm pretty much stumped on this one.
 

Kev

Senior Member
Nice health plan.... sure, for the insurance company. As a very, very last resort, you could see if any 'Canadian' snowbirds living in the South Florida area care to adopt you... Realistically for a moment (but what's the fun in that) are there any support groups, Crohn's associations, anything along those lines in your area you can contact? I'm wondering if they would have had prior experiences along the same lines... I'm betting you aren't the 1st person there who has faced similiar circumstances... Maybe they know a solution, or maybe there isn't one. Almost choke on that thought as I type it, but it may be the 'reality' of the situation. And if so, finding out before depleting your reserves, may be the best thing in the long run.
 
M

Methofelis

Guest
Kev said:
Nice health plan.... sure, for the insurance company. As a very, very last resort, you could see if any 'Canadian' snowbirds living in the South Florida area care to adopt you... Realistically for a moment (but what's the fun in that) are there any support groups, Crohn's associations, anything along those lines in your area you can contact? I'm wondering if they would have had prior experiences along the same lines... I'm betting you aren't the 1st person there who has faced similiar circumstances... Maybe they know a solution, or maybe there isn't one. Almost choke on that thought as I type it, but it may be the 'reality' of the situation. And if so, finding out before depleting your reserves, may be the best thing in the long run.

South Florida has very few Crohn's related anything here. The only support group I've been to was originally for lupus, but expanded to include all autoimmune diseases. I'm the only person with Crohn's there.

Social security won't accept me, medicaid turned me down ... bah. They all hate me. Heck, my mother who has failing kidneys can't even get disability easily. She hasn't been able to work for four years. Insane system we have.
 
M

Methofelis

Guest
Pentasa is doing very little ... aside from give me a massive headache all of the time... horray.

I had a *slight* change in consistency and frequency of my bathroom trips, so hopefully that will continue.

On a side note, and not a great one ... I was all excited about my boyfriend being cleared ... we were wrong. He has a "nodule" in the lung and spleen. They are guessing it spread. Ugh ...
 
oh hell. i'm so sorry to read about your boyfriend. i guess he's got some nasty treatment ahead of him, poor guy. and poor you too. life is real bitch sometimes.

dont know what to say really, just i'm thinking of you, and i hope you both get to full recovery & can put this nasty phase behind you.
 
M

Methofelis

Guest
Thanks, dingbat. Yes, he now has to have radiation treatment for a few weeks, once a day. We're not thrilled, but it is better than us having found it too late. Much better.

I appreciate your well-wishes greatly. :smile:
 
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