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Posted 5/26/2013 5:06 PM (GMT 0)
My sixteen year old son just ridiculed me for sitting down instead of helping him start the weed wacker.

Like I can do anything else. Or have done anything else for over a year.

Lovely behavior he's learned from my husband who does not love a wife with a chronic illness, and just told me this morning that I wasn't fighting hard enough to get better.

This is no life sad

Ok, that's enough pity party - I've got supplements to take...
Posted 5/26/2013 5:17 PM (GMT 0)
Its a shame your husband isn't more understanding and setting a better example for your son.

I think we all have a pity party for ourselves from time to time. No one understands unless they are in your shoes. And your husband better hope he never gets sick or you may not be too supportive of him.
Posted 5/26/2013 5:35 PM (GMT 0)
I mean, I understand you but this:

"budesonide - 9 mg
hydrocortisone enema
Imuran – 100 mg
Remicade - 7.5 mg / kg
Ca, Fe, Vit B Complex, Vit C, Vit D, Colostrum, Fish Oil, Kelp, L-glutamine, PD Ultra, Digestive Enzymes, Limited FODMAPs"

you take this so you can function. That's the whole point of these meds. To make you normal.

If that doesn't work you must try something else. Always.

I work everyday, diaper to get to work, then lift boxes here and there at work. It's not easy with this disease, but I'm not going to let this disease stop me regardless how tired I get.

Your husband and kid probably don't understand, but you need to lift yourself up and just do it no matter what it is and how you feel.

"Like I can do anything else. Or have done anything else for over a year."

This is not right. Man, I was going to the hospital in the mornings, getting medicine, then getting to work with a vein open for easy access all day. No facking way I stop what I'm doing for this disease, I go till I drop dead.
Posted 5/26/2013 5:45 PM (GMT 0)

Somedude said...
This is not right. Man, I was going to the hospital in the mornings, getting medicine, then getting to work with a vein open for easy access all day. No facking way I stop what I'm doing for this disease, I go till I drop dead.

So Somedude, when you physically can't do what you want to do (which is a situation a lot of us here have faced) and you're on the max dose of all the medicines available... you'll get surgery?
Posted 5/26/2013 5:48 PM (GMT 0)
I work 40 hours a week. It is not a physical job, but it is stressful. I teach a kid's class on Saturdays. That does me in for the week.

My knees are really bothered by steroids right now, so I haven't been walking the dogs in the evening. I try to limit my housework to upstairs - there is plenty to do up here.

I probably change my supplements too often, but I really am on a protocol now that I seem to be settling into. I had something like a poo this morning!

I think I have something else going on. I had some abnormal thyroid tests recently. My PCP wants to retest in three months (which is two and a half now), but that will be after my GI wants to send me to the surgeon. I'm looking at calling another specialist. Waking up from surgery with the same non-UC lethargy is not in my plan.
Posted 5/26/2013 6:02 PM (GMT 0)

Pluot said...

Somedude said...
This is not right. Man, I was going to the hospital in the mornings, getting medicine, then getting to work with a vein open for easy access all day. No facking way I stop what I'm doing for this disease, I go till I drop dead.

So Somedude, when you physically can't do what you want to do (which is a situation a lot of us here have faced) and you're on the max dose of all the medicines available... you'll get surgery?

yeah, most likely. That was my plan. When I reach the end and after trying everything under the sun, meds, supplements, diets etc etc, I will concede. I'm not about to spend the next 30 years like this.
Posted 5/26/2013 6:44 PM (GMT 0)
so dude, it doesn't sound like uc has changed your life much - i guess that's what it takes for most to decide it's time for a bag - if your quality of life is ok at this point, why would you visit the chopper ?

i suppose some people have to be so incapacitated that the have to get past the fear of the bag - or they get so sick they literally have no choice in the matter - that's kinda how my wife makes decisions - basically when it gets to the point where there is no decision -

Posted 5/26/2013 6:44 PM (GMT 0)
So sorry Tornado. It is so hard having this d.disease and to have unsupportive people really stinks. Sending hugs to you!
B
Posted 5/26/2013 6:46 PM (GMT 0)
sorry t6 - this crap sucks ! it turns us into people we'd never be otherwise -
Posted 5/26/2013 6:51 PM (GMT 0)
Tornado6,
If you aren't getting the results you need from Imuran and Remicade, have you and your doctor considered testing to see why these meds aren't working better for you?

Imuran can be metabolized into different compounds - 6-MMPN or 6-TGN. Only one of them has an immuno-suppressive effect. The Prometheus Thiopurine Metabolites test can tell you the levels of 6-MMPN or 6-TGN. (This is different from the TPMT some people have before starting Imuran.) If you are not producing the immuno-suppressive compound, then allopurinol could be used to force a LOW dose of Imuran to metabolize into the desired immuno-suppressive compound.

Imuran 100 mg would a good dose for someone who weighs about 110 pounds or 50 kg - this would be 2.0 mg/kg. If you weigh more than 110 pounds, you could consider going to a higher dose. Sometimes a dose of 2.5 mg/kg is used.

There is an expensive test (up to $2500) by Prometheus Labs to test Remicade levels and for anti-bodies against Remicade. Prometheus offers discounts based on financial hardship.
The Mayo clinic uses Esoterix Endocrinology for this test, supposedly at a lower cost.
http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/57617
If you have anti-bodies against Remicade or if it just clears from your system faster than normal, you could try Humira.
Posted 5/26/2013 6:56 PM (GMT 0)

soystud said...
so dude, it doesn't sound like uc has changed your life much - i guess that's what it takes for most to decide it's time for a bag - if your quality of life is ok at this point, why would you visit the chopper ?
i suppose some people have to be so incapacitated that the have to get past the fear of the bag - or they get so sick they literally have no choice in the matter - that's kinda how my wife makes decisions - basically when it gets to the point where there is no decision -

actually it has affected my life a lot.

I used to go in vacations, I can't anymore.
I used to play high level competitive badminton, I'm not even playing badminton all together, let alone high level.
I used to go to bars and stuff. Eat what I want, etc.
I'm skinny and probably underweight because of the diet more than because of UC. I have to fix this somehow and get to my desired weight. I can't deal with this forever, for me it's unacceptable. I don't consider being underweight healthy no matter how someone would feel. Of course, the reverse is true also.

My quality of life if I were to scale it, would be a 4/10. If I couldn't work, then it would drop down to 2 or 1 and that would be it.

At this point I take it day by day, if I plan the future I get discouraged.
Posted 5/26/2013 7:10 PM (GMT 0)
so how long do you give the "diet" before you say to heck with this, i'm gonna eat ?

for me, as long as my body was "sick" it didn't matter how much i ate - maybe you're at a point where the drugs will give you the ability to eat normal again -

Posted 5/26/2013 7:28 PM (GMT 0)

soystud said...
so how long do you give the "diet" before you say to heck with this, i'm gonna eat ?
for me, as long as my body was "sick" it didn't matter how much i ate - maybe you're at a point where the drugs will give you the ability to eat normal again -

Man, I don't know anything, I don't understand anything revolving treating this disease or how it acts with my body.

I keep trying different stuff, diets, meds, it's like they seem to work, then they don't or they "plateau"

Now I'm over 1 month of grain free, not much of a difference, still blood, but less admittedly. Soft stools, multiple trips to the bathroom, urgency of course.

I have Humira in my fridge but I'm scared to start trying this. I keep hoping the diet will start working. Or something else starts working. I bought that thing Pathogen suggested, I'll probably try that.

You know, surgery makes sense just because there is no logic in all this. No logic that I can discern. From what I've seen in the past 2 years of being here, there's WAAAAYY too much randomness in treatments and healing methods.

Oh and to answer your question, how long? I have no clue, well actually I have. I'm 127lbs now. If I drop close to 120 lbs, I will re-introduce carbs. I will have no choice at this point. A diet like SCD/Paleo is not sustainable by someone that is sick. It's probably a great diet or way of living if you're healthy.

I should be 150-155 lbs. At my highest, I was 170lbs. I dropped from 165-170 to now 127, ridiculous.
Posted 5/26/2013 8:01 PM (GMT 0)

steven65msp said...
Tornado6,
If you aren't getting the results you need from Imuran and Remicade, have you and your doctor considered testing to see why these meds aren't working better for you?

This is my second time on both Imuran and Remicade. I've only been on Imuran since March 12th, and my 'first' Remicade infusion at the new dosage and frequency was April 18th. My next one is next week.

I've had both of these Prometheus tests. Last summer we thought I was having a reaction to Imuran and we did the Promethus genetic test at my old GI. I had the AnserIFX done before I restarted Remicade.

I have room to increase my dosage for both drugs, if that is what my doctor decides to do. She gave me 90 days at this level to see what happens.
Posted 5/26/2013 8:10 PM (GMT 0)
She gave me 90 days at this level to see if she could get me off of steroids so she can send me to the surgeon clean... ;)
Posted 5/26/2013 8:26 PM (GMT 0)
Hey Tornado, what does your husband say about your disease.
Posted 5/26/2013 8:51 PM (GMT 0)
He usually does not say much. I mostly hear about it when I've asked him to help with something I can't get done.

He is not interested in any of the research or side effects of the medicines I'm on or anything. I used to bring him brochures and send home websites, but he won't read them, so I've long since stopped doing that. He's not helped make any treatment decisions, and usually doesn't go to appointments with me, unless I need a ride home.

He knows where I keep my medication list and diet / bathroom journal if something bad happened and he had to tell ER docs what was going on.

His Mom has been disabled since he was in High School. She has a lot of physical problems and severe depression that has kept her sick and actively resisting treatment for decades. He is not able to unpack that baggage from my illness.

He does help - he does a lot more cleaning, he's the one walking the dogs while I can't, he grocery shopped this afternoon...
Posted 5/27/2013 12:56 AM (GMT 0)
Tornado

I feel so badly for you in a home without support. Kids can be cruel if they have not been taught to be kind to those who need help. If he learned this behavior from your husband then it is very sad indeed. Do what you have to do to take care of yourself but do not neglect teaching your son when he steps over the line, make him a better person.

Hope your UC turns the corner to improvement.

Ima
Posted 5/27/2013 1:21 AM (GMT 0)

Somedude said...

Your husband and kid probably don't understand, but you need to lift yourself up and just do it no matter what it is and how you feel.

 

 

Now, this is how I see it.....pick yourself up and give your HUSBAND AND YOUR SON a kick in the ass no matter how you feel.....then say "you should be ashamed of yourselves to put me in the position for you to hate so much and feel the right to disrespect and bully me. 

 

q

Posted 5/27/2013 6:30 AM (GMT 0)
DS did have to sit through a talk, but it was later in the day. I would have been no good at the time - would have just been steroid fueled yelling and crying. He is generally a compassionate person and made this comment in the heat of frustration specifically because he knew how much it would bother me. I think he was trying it on for size.

Backtalking is really common. He just got me with this one. He knows it made me cry, and he does feel bad about it. He did offer a real apology. I hope he won't go that route again. I don't think he liked the results either. He's not usually a cruel person.

I know my UC has been stressful and scary for him, and I know he's watched my marriage fall apart with my health over the last two years. I try to have my mom talk to him on the side from time to time about it. It is not a subject he likes to hear about from me much, but she says he's pretty communicative with her when they talk. He's been to a counselor, but he literally spent sixty minutes in complete silence twice, so I decided that was probably not worth the money.
Posted 5/27/2013 1:03 PM (GMT 0)
I think you should put laxative in his food for a few weeks.

When I was dating my husband and he got exasperated with my needing a bathroom stop, again, I told him I would rather have peace to deal with this disease than any man. And I meant it. He straightened right up, never was an issue again.
Posted 5/27/2013 1:58 PM (GMT 0)

Peety said...
I think you should put laxative in his food for a few weeks.

Haha! He ate White Castles for breakfast, well, second breakfast this morning :-/.

I think he's done it to himself!
Posted 5/27/2013 3:43 PM (GMT 0)
Somedude, I think you will see a difference with the cryptolepsis. Tell me when you get it and how you feel on it. I really really really think its going to help some... By now you have to have other dysbiosis in your gut that is going to need some correcting too, but that Proteus needs to get beat down first.

Tornado,
Im so sorry you have so little compassion from the people around you. :( I know you are trying really hard and doing so much. Its not fair that you are still feeling so poorly!

Do you know for sure that the l-gluatmine is helping you? You react to onions and that may mean glutamine would be an excitatory for your system. I dont dig that weird version of the fodmaps diet that you were on. You need so much more healing before challenging anything! Have you tried eating paleo for a couple weeks and just seeing how you feel? ( I dont like it as a long term diet, but for a couple weeks..)
Posted 5/27/2013 4:10 PM (GMT 0)
"Have you tried eating paleo for a couple weeks and just seeing how you feel? ( I dont like it as a long term diet, but for a couple weeks"

wat? you already eat paleo...yeah yeah, paleo is no carbs, but there isnt much difference between paleo and your restrictions. ;)
Posted 5/27/2013 4:55 PM (GMT 0)

PathogenKiller said...
Do you know for sure that the l-gluatmine is helping you? You react to onions and that may mean glutamine would be an excitatory for your system. I dont dig that weird version of the fodmaps diet that you were on. You need so much more healing before challenging anything! Have you tried eating paleo for a couple weeks and just seeing how you feel? ( I dont like it as a long term diet, but for a couple weeks..)

I know onions, cabbage, and mushrooms are a sources of glutamine, but I thought it was metabolized to glutamate in the body. I'm supplementing to avoid those gassy foods. The pills don't seem to bother me. I've been hunting gas producers like crazy, which is the main functional symptom I was challenging.

I followed the IBS Free at Last elimination diet exactly as written. Since the Aussie's US book isn't due until August 12th, I went with the best-selling US version. She also keeps her website updated with the latest FODMAP testing coming from Monash, but I would have preferred going to the source if I could. UC vacation to Australia everyone!

Everything seems to be working pretty well. The digestive enzymes, Iberogast, and low FODMAPs have really helped with gas, and I have not written blood in my journal for five days!

I might be looking at Paleo, or "worse," in a few weeks. I'm going to ask about repeating the hydrogen breath test. I took xifaxan for SIBO once before, but I didn't have any follow up treatment at all, and all of my functional symptoms do seem to lean toward that being back.

I've been looking at hypothyroidism and SIBO - so I have a feeling those will be addressed together this summer. I'm not going to just eat antibiotics and quit this time though :)

JCEM said...
Results: A total of 27 patients with a history of hypothyroidism demonstrated a positive result to the breath test (27 of 50, 54%), compared with two in the control group (two of 40, 5%). The difference was statistically significant (P < 0.001). Abdominal discomfort, flatulence, and bloating were significantly more prevalent in the bacterial overgrowth positive group. These symptoms significantly improved after antibiotic decontamination. Thyroid hormone plasma levels were not significantly affected by successful bacterial overgrowth decontamination.

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