Just spent an hr typing my now deleted story

[idon2738]

:ylol2:

Here's the short version because I'm definitely out of patience now! :voodoo:

I have Crohn's, had an abscess removed in 06' took Prednisone for a couple months on a tapered regiment along with Imuran.

I took the Imuran for a couple years until I decided to try and control it with diet and diet alone.

I talked to my Gatro. and she told me if I were choosing to do so that I stay closely monitored, I said sure.

Now it's 2010 and I have no health insurance and am starting to worry about what affects the Crohn's may be having on me. I know I need to get set up with another Gastro.. but my life has been turned upside down as of late and it's one of the many things I need to get straightened out.

For now though, my symptoms are mild cramping and I feel extremely weak and lack energy. I show definite signs steatorrhea which would explain the lack of protein and carb absorption.

Does anyone know of a quick fix to replenish some of my strength and energy? I know that's almost an oxymoron in the world of crohn's issue but the money for supplements and health care isn't available at this time.

 

[kello82]

oh god i have done that before!!! you spend 902485209 hours typing out a killer post and then you do something totally dumb like hit the back button. at least thats how it goes down in my world....

anyways, glad you still posted though!

hmm ok well the weakness and fatuige and such may be anemia. usually vit B (especially b12) supplements and iron for SURE help that. sometimes it takes a while to kick in, maybe even a month before you start feeling better, but it has helped me in the past.
BUT since you say you dont really have $ for such things, and yes those things are damn costly, maybe look up and see what types of foods are high in these nutrients?
that may be a toss up because if your body is doing a poor job at extracting nutrition from your food ANYway, you may not see much result from anytype of food/supplement that has to be absorbed thru your intestines.
but its worth a shot.

the way to monitor this is to get blood tests for your hemoglobin and hematocrit or something like that.... that will tell you if it is going up, down, or what.
again, i dont know how much blood tests routinely cost if you pay out of pocket.
IMO that MAY be worth it or it might not.
either way....if you are feeling extremely fatigued and such, it would be REALLY good to know the state of your blood. hemoglobin is what carries oxygen to parts of your body, so a significant reduction of that is not positive.
a few years back i wasnt having bloods done really and i didnt even realize that i was less than half the normal hemo. and i was doing sports and crap too, i mean that prob was not a smart move to push my body that hard, heart has to work twice as hard. not cool.

ANYways my point is that getting a blood test, even just once, might be quite important. dunno though, i am no dr, but it might be good just to know.

welcome btw!

 

[idon2738]

Hey! Thanks for the quick reply and for the warm welcome.

I assumed a B12 injection would be probably help out a lot considering I can't digest vitamins without a lot of discomfort (of course, who's to say they're being absorbed too!)

I have done a lot of research as to what foods contain a lot of B vitamins and I will continue to, like you said, there's definitely no harm. I will ask though if anyones heard of potassium-sodium imbalances causing a lack of energy as well?

I don't think blood work is that expensive and if you don't mind me asking- Do know what caused your hemo. to be so low? And what were your symptoms?

Also, just to add a little tidbit of information, I have no bleeding, and haven't since prior to my surgery 4 years ago, so would it be safe to assume my Iron levels aren't the culprit? (Although, they have been low before)

 

[Rebecca85]

I sometimes have probs with sodium because my diet is low in salt, and salt is mainly absorbed in the terminal ileum. So if my muscles feel weak (well weaker than normal) I have a cup of bovril. A lack of sodium is rare in healthy individuals, so there isn't that much info about it.

 

[DustyKat]

Hi idon and :welcome:

Do you have Ileal Crohn's?

I am making an assumption here based on the fact you stated you have steatorrhea. If it is located here and is active you will have difficulties with absorbing fat, B12 and salt. The lack of B12, iron and folate will leave you feeling fatigued and contributes to the anaemia along with the constant loss of blood. Not the obvious type of loss, it's not something that is visible to the eye, but rather more like a tap that just slowly drips away, nothing much to speak of on a daily basis but makes quite an impact over an extended period of time.

I don't know of any quick fixes with this type of deficiency that doesn't involve medication and supplement. I would imagine that it would be difficult to turn around quickly with diet if you are suffering with malabsorption.

I'm sorry I can't be of more help considering the financial situation you are in but others that will be along may have the answers you need.

Good luck and keep us posted on how you are travelling.

All the best,
Dusty

 

[Dexky]

Good luck and keep us posted on how you are travelling.

All the best,
Dusty

Fosters, Australian for beer...I'm sure she means how you are doing, feeling etc.

Dusty's great help but she'll need translating occasionally.

I like your sense of humor about such a serious situation. How old are you Ian? Do you still qualify for the state CHIP program? You look young from your pic. I think it's been extended to the age of 26. Not sure though. Good luck!!

 

[Astra]

:welcome:

Hiya Idon!

xxxx

 

[Cat-a-Tonic]

Welcome Idon! To answer your question and to concur with what Rebecca said, if you have low sodium, that can definitely affect your energy levels and your blood pressure. I've experienced low sodium myself frequently and I have found that if my blood pressure gets low (if I get dizzy and light-headed) due to my sodium levels, that drinking a teaspoon or two of soy sauce brings immediate relief and I pretty much instantly feel much better. So you may want to try that (soy sauce is very high in sodium so a spoonful or two is all you need).

Also, if you can't digest vitamin capsules well and you can't get the B12 injections due to your lack of insurance, you may want to try sub-lingual B12 lozenges. I buy them at Whole Foods, they come as 2000 mg lozenges and you just put one under your tongue and it slowly dissolves. I read that those tend to be absorbed better than capsule-style vitamins. Good luck!

 

[D Bergy]

B vitamins are water soluble and so vitamin C. The rest are pretty much fat soluble.

To help absorbing the fat soluble vitamins you can take a spoonful of Coconut Oil along with them. Coconut Oil consists of simple saturated fats that are easily absorbed. These fats also provide a lot of energy and Coconut Oil is antibacterial and antifungal, which may help with other aspects of the disease. That is why it can be stored for years without going bad.

It was proposed at one time that saturated fats were the cause of heart disease, but since this hypothesis was largely pushed by the makers of vegetable oil, the reality is questionable at best.

Dan

 

[InkyStinky]

Hi there! Sorry to hear your Crohn's is acting up again. Last summer I was in kinda the same boat as you - Crohn's symptoms (had been on 6mp, then stopped it and had a 3yr remission), no health insurance, very limited funds. I didn't qualify for state aid, but I discovered that most clinics/hospitals have some kind of financial aid for people with no insurance - had to ask, though, as they weren't exactly advertising that fact. There was a financial aid counselor at my GI's clinic who was really helpful - maybe this is something you could look into so you could see a GI/get bloods done, etc.

And since this whole post has nothing to do with your question, here's some more un-asked-for facts :biggrin: : if you end up needing meds, check into walgreen's "w-card" or costco pharmacy - they both have huge discounts on the meds I'm on.

Sorry I don't have any advice about the fatigue. That's my biggest problem right now, and the docs have already ruled out deficiencies/anemia/thyroid/etc.

 

[Regular Joe]

Hi Idon,

I'll second the B-12 theory. Also, I've found that the sublingual form works better for me, and since you are in the states, you can go to Vitamin World who carries a sub-lingual B-12 complex with many other B vitamins for less than 10 bucks!

Another suggestion. if you're a "red-meat" eater, umm sorry. I love steak, but I found if I cut red meat consumption down, I stay feeling better. A BIG deal is keep a close eye on your eating habits, and look at some "problem food" guidleines to experiment with your diet. You might find some real simple relief in diet modifications alone.

In case you might be like many of us, another simple thing that helps energy is getting more "regular" sleep and cutting the goofy "wee-hour" thing that throws sleep schedules out of kilter. I speak not judgementally, because I am the prime suspect!

One more "energy replenishment" idea. If you are like most of us here, you think you are actually Superman or Superwoman. You're probably stubborn and will run yourself into the ground because you want things exactly your way. Again, I'm not the judge, but the prime suspect. There are many here who will join in the chorus too. We DONT KNOW WHEN TO STOP when we suddenly feel energy that returns!

Good luck and welcome.
Joe

 

[Silvermoon]

As a nurse (hi Dusty! :bigwave: LOL! ), it both amazes me and saddens me (just a bit) at how much people know about what can go on in the body and how to handle such things.... Kello...I think you hit the nail right on the head.... and I am so proud of you for obviously listening and learning about your disease.... at the same time it saddens me just a bit that you have had to do such a thing at such a young age.... ((((((((((((( Kell ))))))))))) .....

Anywho's... moving on.... (a...herm...)

I, too, agree with everyone's comments, and am really glad Joe has added the whole "Superman" theory... and he is one to know.... lol

This morning, as I dragged my a$$ out of bed and stumbled to the shower to get ready for day, thinking "Ohmigod...I slept for like 15 hours last night...why the freak am I still tired?!?!?" ... a thought popped into my brain.... please anyone, correct me if you have other opinions...but I think it is kinda working like this....

We know our IBD is caused by a glitch in the immune system... our body thinks "something" is attacking it, so it goes into overdrive trying to get rid of it.... so it cause inflammation...well...ANYWHERE really, but most of the time for us...it's in our bowels....

So...we already have a body that is in a constant fight with itself... but sometimes...hey!!... we feel pretty good!! So we go out and paint the barn and hand cut the grass and wash the walls and install an airconditioner and renovate the guest room and bathroom....and then it's like we hit a brick a wall....not only do our guts go into overdrive...but some of those other things crop up....tiredness/fatigue...overly sore muscles/tendons/joints.... eye inflammation... ear problems.... (I was thinking about this as I was trying to flush out my ears AGAIN this morning.... this is what caused the whole thought...) ....

I think what happens is our body goes into OVER overdrive.... WE feel good...but our body sees us doing all kinds of stuff and thinks.... "Huh..all that activity...she is going to come across some kind of "bad bugs" soon.... we should work harder to keep them away...." and BAM...we are in a flare and flat on our...ahem...***** for three days.....

So...if this is infact what our bodies are doing to us...it now makes sense why my doctor kept bugging me to rest, even when I feel good, and try not to tackle on the world.... You would think after 24 years I would figure it out.... but like Joe says...when you feel good....you go, go, go (and NOT to the bathroom!!) ...for me, it's cause I am trying to get as much done as I can before I feel like crap again.....

So now that you are exhausted from reading all that and your body is in a flare again... go have a nap... sometimes sleep is the best medicine you can give yourself....

Good luck. :rosette2:

 

[idon2738]

Hey everyone, Although I haven't responded to a lot of the posts on here I have been reading them. I appreciate everyone pitching in to answer my question (and at every angle at that-- wow)

I'm going to try and respond to all of them in my own way, so here goes:

First off, yes, I have Crohn's PRETTY (and we all know why I add this) specific to the Illeium, thus the malabsorption. I assumed it was a lack of B12 and/or Iron, amongst other things I'm sure, causing my snowballing fatigue.

I am 22 y/o

I was pretty sure that low-sodium wasn't the culprit because I feel I digest too much of it, if anything. I tried the soy sauce regardless though, just in case.

Thank you for the coconut oil tip, when trying to absorb fat soluble vitamins and I'll definitely look into the w-card from Walgreens, as I'm sure it'll come in handy soon.

Now, just as an overview of my whole situation... Since the day I was diagnosed I probably read crohn's literature for a week straight. I don't think I was ever "worried" because I've never been the type waste time with stress or "woe-is-me-ing'. It's not even something I necessarily take pride in, I just naturally look ahead to what I can control. I have been pinpointing trouble foods since dx but find it difficult to pick out foods that have minor affects and address them as "bad".

Aside from the weeks leading up to my abscess being drained, my symptoms have never really sounded as severe as a lot I've read about. (knock on wood) I don't know if that has something to do with the way I look at it, or if I really have a less severe case. From what I gather though, needing a draining of an abscess created by a fistula qualifies it automatically as, "severe".

I have another random question: How do you know if the Imuran (or any immunosuppressants) are actually working? I guess I wasn't having the malabsorption while on it, but the mild cramping, seldom bloating and everything was the same as it is now without the meds.

Back to the present (I know this is quite scatterbrained), I went and picked up some chewable B12, a liquid Iron supplemented with B 1,2,6,12 along with other herbs. Some pure L-Glutamine powder and veggie based probiotics. I also have blood work set up for Monday.

Also, I am aware of not overdoing it, even when you start to feel some energy. I will definitely apply that warning from now on, BUT, in my particular situation, I would honestly just attribute my current state to steady Crohnin'- or wear and tear. I HAVE been screwing with my sleep schedule lately though--- I just moved from Minnesota to New Jersey, to Florida within the past 2 weeks. Although, it's been a very stressful situation, I can't consciously say that's the culprit, but it may play a part. As far as AMOUNT of sleep or energy exertion--- I've been sleeping 11 hrs, laying around in bed watching movies throughout the day, with the exception of getting up to eat and doing it over again. I'm positive as can be, aware I'm in a temporary limbo at the moment, but I would be lying if I didn't admit that I was definitely depressed at the time being.

 

[MisB]

Hello Idon, and welcome to our little world. Sorry I haven't posted sooner, been laying a little low myself lately. I can not think of anything to add to the health tips, but I might be able to help with the financial ones. While you are in Florida, check into the local health programs. I live in Manatee County, qualified for the low-income assist program and my 12 day hospital stay, $18,000, was written off. Not to mention my GI has not asked me for a penny. Please note, I do not like accepting these charities, but for now I'm doing what I have to do. When I ever get the money, I plan on making donations back to these programs. Unfortunately, right now there is not much else I can do. It is all being covered under the county, state, and federal assistance programs. It's not easy in the fact that you have to provide so much information on living situation, income, and how you landed in your current circumtstances, so depending on how much you are willing to put into paper work and providing your life's story to some people that can sometimes be very rude, you might be able to get some medical help that you can afford. Most counties in Florida have health clinics that have you pay according to your income so your payments could range from zero to $50 per visit, depending on your income. I do officee administration for a living, or at least I did, so I found the processs somewhat easy. For someone not use to paperwork, it can be very frustrating. The first place you might contact is a local church and/or local United Way. They will not provide the assistance, but should be able to direct you to local agencies that can. I wish you the best of luck and hope you feel better real soon. Please keep us posted.

 

[idon2738]

"""Ahwwww, good morni- dinner time? Hmmm, I knew I was feeling crappy yesterday, a little more than usual, but not this bad! Maybe I just slept too much and its gettin at me. I'll try to eat and maybe I'll bounce back!
---- *58 bathroom trips later, Ian, dizzily stumbles back to his bed and finally feels at home again after the black spots disappear*

"Oh no! Could it be? Please tell me all mighty god- Crohnelious, is this what I think it is?

*The mounting signs hit Ian like a ton of toilet paper*"

"Full blown flare up?!?!"

Answer-:hallo3:

I'm waiving my white flag, I feel pretttttttttty bad right now, and when I say that--- It's pretty bad.

I'm stuck, I have a medium to low fever, i'm freezing, and been having night sweats the past couple of nights.

I was taking L-Glutamine power and I am almost positive that was the supplement that triggered it fully.

I dont have health care, I went around looking for some aid and was basically told, unless I've lived here (in florida) for 3 months or want to pay out of pocket on a rather horrible slide scale, I'm done for.

But at this point, I'm ready to jump in a hospital bed, tell em to put it on my tab and pump the meds

 

[idon2738]

Temps @ 101.0

 

[silver]

D: That's awful...you need to get some treatment quickly! Is there nothing they can do for you?

I'm feeling very thankful that we have the NHS here now...

 

[DustyKat]

Ditto^^^^.

 

[Astra]

Hiya Ian

sorry I didn't welcome you earlier, was having a bad time
anyway hope you're ok, and get yourself to ER, what's the worst that can happen? they throw you out cos you're skint? your temp isn't normal, could be infection setting in there or blockage, this happened to me too, I was shivering and boiling hot!
get going!
let us know how you are
xxxx

 

[InkyStinky]

Aw Ian, I'm so sorry. Is there a Catholic hospital anywhere near you? I'm not Catholic just for the record, but last year I was visiting my folks out of state and ended up in the hospital. It was a Catholic hospital, and I cried when I found out the amount of financial aid they were giving me (this was after I was admitted - I was in no state to even worry about the money when I was admitted). Anyway, when I called the financial people to thank them they said it was part of their mission.

But regardless I really agree that you need medical help - the money part could definately be a pain, but right now you need help. Put your health first, and then sort out the money stuff later (I've been there - it's scary but it does work out).

 

[idon2738]

Quick update---- I'll post again very soon

All blood levels checked out at the ER. Funny how being told I was a picture of health in every way pisses you off.

Next step, Gastroenterologist

 

[idon2738]

Update

Hey all, it's been a couple days after seeing the GI, getting the tests, the results, now, most recently the meds.

I started taking the prednisone today- 40mg, downing some pedialyte and my fav, 500mg of cipro and flagyl.

All things were clear, not a major flare-up, I was very slightly anemic and sodium levels were 1 microliter low... So, all in all- I'm a little imflammed, dehydrated and some trace minerals were low. The main thing causing my immediate problems was a rise in bacteria related to a fistual (which is still fully healed).

Started to eat like the hulk already though--- I've had 6 sandwiches, one of them being a fairly good sized sub a couple yogurts and I cannot even count the amount of fruits and snacks in the past couple of hours (all of this within the past 8 hours). I've eaten more today than I have in the past week in a half, total!--------- :banana::banana::banana::banana::banana:

Energy lvls you ask? = :runaway:

 

[idon2738]

P.S. Thanks for all the advice, support and care everyone:ghug:

 

[Astra]

Hiya Ian

so glad you're ok!
the Pred will sort you out! aw, Pred munchies! does it feel good to eat?
sending get well soon wishes
xxxx

 

[xoxava]

Ah I hate the pred!! But it sure does feel good to be able to eat hope all goes well for you.

 

[InkyStinky]

Started to eat like the hulk already though

:lol2: So glad you can eat - at least pred's good for something. :lol2: Hope those meds get you feeling well again really soon. Did the GI have plans for you as far as maintence meds or anything?