Crohn's and Colitis & GastroIntestinal Joys of Life - Our Very Own Thread

Tardis2016
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Re: Crohn's and Colitis & GastroIntestinal Joys of Life - Our Very Own Thread

#276

Post by Tardis2016 » Tue Sep 27, 2016 7:51 pm

SueDB wrote:Kinda trying to figure out under which topic to place this. I figure since the cause of Crohn's is unknown at this time, it would go under - ongoing scientific research. Also, there are several very high tech cutting edge treatments available for folks who have these conditions. http://i833.photobucket.com/albums/zz25 ... ibbon.jpgI guess the C & C folks get whatever color is left over for a ribbon, eh???. Brown is rather appropriate?? Yes? No? :roll: :roll:
Celiac sufferer here! :wave: I have very few symptoms now that I am strictly gluten free, but I was bedridden for quite a few years.
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Re: Crohn's and Colitis & GastroIntestinal Joys of Life - Our Very Own Thread

#277

Post by sad-cafe » Tue Sep 27, 2016 7:58 pm

it is a horrible nasty disease and it makes me miserable

My last infusion was 3 and 1/2 weeks ago and I am already miserable. The doc wants to move remicade to every 4 weeks but insurance is fighting it. If they had to live my life, they would say hook up a permanent drip.

Complicating the matter is the fact that I am back in the regular classroom and teaching 100+ and not just 2-7 an hour.

I am not as young as I used to be and I think maybe this damned disease is going to either kill me or I am going to have to retire or take disability.

If I didn't have f'n student loans, I would be so retired!

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Re: Crohn's and Colitis & GastroIntestinal Joys of Life - Our Very Own Thread

#278

Post by SueDB » Tue Sep 27, 2016 11:52 pm

sad-cafe wrote:it is a horrible nasty disease and it makes me miserable

My last infusion was 3 and 1/2 weeks ago and I am already miserable. The doc wants to move remicade to every 4 weeks but insurance is fighting it. If they had to live my life, they would say hook up a permanent drip.

Complicating the matter is the fact that I am back in the regular classroom and teaching 100+ and not just 2-7 an hour.

I am not as young as I used to be and I think maybe this damned disease is going to either kill me or I am going to have to retire or take disability.

If I didn't have f'n student loans, I would be so retired!
I'm on it every 5 weeks. Doc doesn't want to go to 4...just have to hold it that last week I guess.
Fortunately, I was able to retire.
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Re: Crohn's and Colitis & GastroIntestinal Joys of Life - Our Very Own Thread

#279

Post by SueDB » Wed Sep 28, 2016 12:00 am

Tardis2016 wrote:
SueDB wrote:Kinda trying to figure out under which topic to place this. I figure since the cause of Crohn's is unknown at this time, it would go under - ongoing scientific research. Also, there are several very high tech cutting edge treatments available for folks who have these conditions. http://i833.photobucket.com/albums/zz25 ... ibbon.jpgI guess the C & C folks get whatever color is left over for a ribbon, eh???. Brown is rather appropriate?? Yes? No? :roll: :roll:
Celiac sufferer here! :wave: I have very few symptoms now that I am strictly gluten free, but I was bedridden for quite a few years.
I feel your pain..... 8-)
No tuna.... Strangely enough, the thing that gives me the most relief is Mexican food that is heavy on the different kinds of beans and easy on the spices. When I'm feeling really uh crappy, I go over to the Farm Boy and eat a chiliburger. I'm set for about 12 to 18 hours. Also my home made crock pot chili is a staple at my house especially if I can talk my one of my in-laws out of some elk. ;)
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Re: Crohn's and Colitis & GastroIntestinal Joys of Life - Our Very Own Thread

#280

Post by Sterngard Friegen » Wed Sep 28, 2016 2:02 am

Any comments about the purported discovery that Crohn's is caused by a fungus? If true, that's a big deal, no?

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Re: Crohn's and Colitis & GastroIntestinal Joys of Life - Our Very Own Thread

#281

Post by SueDB » Wed Sep 28, 2016 8:17 am

Sterngard Friegen wrote:Any comments about the purported discovery that Crohn's is caused by a fungus? If true, that's a big deal, no?
It could be a big deal if it would lead to a viable treatment, but it still doesn't change the DNA defects.

It might be the DNA defects/mutations create a host environment for the opportunistic bacteria - Crohn's causes the infective agents to thrive rather than the other way around.

As they say, it's in the jean...err genes.

I am waiting for when we have the ability to repair the DNA in patients.
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Re: Crohn's and Colitis & GastroIntestinal Joys of Life - Our Very Own Thread

#282

Post by realist » Wed Sep 28, 2016 8:21 am

Sterngard Friegen wrote:Any comments about the purported discovery that Crohn's is caused by a fungus? If true, that's a big deal, no?
If true, could be a big deal.

I sent the link to the Princess (who has Crohn's). She has a contact at NIH who is the head of Crohn's research. Perhaps she can give some enlightenment on the article.
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Re: Crohn's and Colitis & GastroIntestinal Joys of Life - Our Very Own Thread

#283

Post by SueDB » Wed Sep 28, 2016 8:23 am

I am always suspicious when I see probiotics. It has been used by the hucksters in the supplement industry for years to sell their chemicals to unsuspecting customers. :shock:
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Re: Crohn's and Colitis & GastroIntestinal Joys of Life - Our Very Own Thread

#284

Post by sad-cafe » Wed Sep 28, 2016 10:07 pm

oh and Lew Dewitt from the Statler Brothers died at 52 from Crohn's disease. He stopped touring with them at the height of their success because of constantly being sick.

I can relate. I have felt like shit since Aug 15. I have watery stools 20+ times a day and have had since school started. Then to maybe try to counter that, I stop eating solid food and lose weight and get my numbers all off kilter. This causes pancreatitis When I was moved to the alternative setting and lessoning my physical stress, I seemed to get better and the word remission was hopeful. Now I feel worse than I have in 6 years.

So-yes you can die from this damned disease =I probably am and I only turn 50 next month

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Re: Crohn's and Colitis & GastroIntestinal Joys of Life - Our Very Own Thread

#285

Post by SueDB » Thu Sep 29, 2016 9:15 am

sad-cafe wrote:oh and Lew Dewitt from the Statler Brothers died at 52 from Crohn's disease. He stopped touring with them at the height of their success because of constantly being sick.

I can relate. I have felt like shit since Aug 15. I have watery stools 20+ times a day and have had since school started. Then to maybe try to counter that, I stop eating solid food and lose weight and get my numbers all off kilter. This causes pancreatitis When I was moved to the alternative setting and lessoning my physical stress, I seemed to get better and the word remission was hopeful. Now I feel worse than I have in 6 years.

So-yes you can die from this damned disease =I probably am and I only turn 50 next month
I won't die directly from it, but from perforated bowel, pneumonia, various systemic & nasty infections, pancreatitis etc -everything but "Crohn's". I have already left instructions to ensure my death certificate - no matter what the cause - is noted as "secondary to Crohn's disease".
I turn 62 next week. I have suffered all my life, but only the last 15 years has it seriously wrecked my health. I have complained and been tested for all kinds of stuff over the years, but finally when my intestines started to rot resulting in iliac resection for my birthday in 2006, did the docs finally wake up and say-you have Crohn's.

It's really embarrassing getting counseled at work because you leave the bathroom smelling really really really bad. Not on paper of course - that wouldn't be quite right would it... I don't even want to think about the gas I would pass-you can't always get outside before it happens. I really felt some pity for folks who were riding the elevator or sharing a car ride with me. :roll: :roll: :o
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Re: Crohn's and Colitis & GastroIntestinal Joys of Life - Our Very Own Thread

#286

Post by TollandRCR » Thu Sep 29, 2016 9:29 am

Given the genetic component to Crohn's Disease, is there still hope for a more effective treatment if the finding about a bacterial and fungal interactive infection is confirmed? I am also suspicious that probiotics will be the cure, but I know that stomach ulcer treatment took a huge turn for success when it was identified as a result of an infection by Helicobacter pylori. My father suffered for much of his life with an ulcer and was on the standard limited diet of the time.
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Re: Crohn's and Colitis & GastroIntestinal Joys of Life - Our Very Own Thread

#287

Post by SueDB » Thu Sep 29, 2016 9:38 am

TollandRCR wrote:Given the genetic component to Crohn's Disease, is there still hope for a more effective treatment if the finding about a bacterial and fungal interactive infection is confirmed? I am also suspicious that probiotics will be the cure, but I know that stomach ulcer treatment took a huge turn for success when it was identified as a result of an infection by Helicobacter pylori. My father suffered for much of his life with an ulcer and was on the standard limited diet of the time.
There's always hope for more effective treatments. As far as I know, there isn't a genetic component to stomach ulcers. IMHO, you have to remove the base issue - the genetic defect for a truly effective treatment. Also treatment doesn't give you back whatever tissue damage has accumulated. If they found a 'cure' for MS, the present patients may see an initial small improvement, but won't get the lost functions back. It would just arrest their present conditions.

When genes drive the issue...
Saw story yesterday on a 3 person baby. Mommy had some bad genes. They replaced the bad genes with good ones from a donor, then fertilized the egg with daddy and ....

BBC - 3 "Parent" Baby Born
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Re: Crohn's and Colitis & GastroIntestinal Joys of Life - Our Very Own Thread

#288

Post by TollandRCR » Thu Sep 29, 2016 9:43 am

I think it was that the birth mother had defective mitochondria, so the physicians used an egg from a woman with sound mitochondria, injecting DNA into that egg and then implanting it.

As I understand it, the procedure was done in Mexico. I don't think that was because Mexico had superior facilities. I think it was because of our laws and professional regulations regarding IVF.
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Re: Crohn's and Colitis & GastroIntestinal Joys of Life - Our Very Own Thread

#289

Post by SueDB » Thu Sep 29, 2016 9:46 am

TollandRCR wrote:I think it was that the birth mother had defective mitochondria, so the physicians used an egg from a woman with sound mitochondria, injecting DNA into that egg and then implanting it.

As I understand it, the procedure was done in Mexico. I don't think that was because Mexico had superior facilities. I think it was because of our laws and professional regulations regarding IVF.
Yeah, the 'evils' of technology.
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Re: Crohn's and Colitis & GastroIntestinal Joys of Life - Our Very Own Thread

#290

Post by Princess foofypants » Tue Oct 04, 2016 9:14 pm

For those of you on remicade, have you tried humira? It is a self-injection so no more hospital infusion centers and my copay is $33 versus the $2800 I was paying. And while I wouldn't say I feel "well" I do manage to bumble through life without missing out on too much.

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Re: Crohn's and Colitis & GastroIntestinal Joys of Life - Our Very Own Thread

#291

Post by sad-cafe » Sun Oct 16, 2016 2:49 am

so,

I'm not sure if it is stress -my district closed the alternative school I had worked at the last 6 years -was perfect for my calling as a teacher, but also with this dreadful Crohn's. They put me back in a regular middle school teaching the most self-entitled 8th grade little shits I have ever taught. As a result, my health has declined rapidly the last 8 weeks. My remicade is every 5 weeks and just this last 5 week span, I was the sickest I have been since I was diagnosed. Infusion was yesterday. At weigh in, they asked if I had been sick because I lost 10 lbs. I said um yea I felt like shit and joked to them that maybe they didn't put any medicine in the bag and charged me for saline. They were like oh no we promise you got your medicine.

all I can say is that I missed 3 days of teaching and was in the ER twice between infusions that were 5 weeks apart. So, did they jack my meds, is it just too much stress teaching anymore, am I getting worse?

I can't do this anymore. I couldn't eat the last 4 weeks and I am extremely tired, very irritable and a little depressed.

I resigned as coach from NAL competition but there is little else I can release.

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Re: Crohn's and Colitis & GastroIntestinal Joys of Life - Our Very Own Thread

#292

Post by Plutodog » Sun Oct 16, 2016 3:09 am

I'm sure sorry to hear you're doing so poorly, Sad Cafe. Is there anything we can do?
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Re: Crohn's and Colitis & GastroIntestinal Joys of Life - Our Very Own Thread

#293

Post by SueDB » Sun Oct 16, 2016 8:57 am

I'm sorry to hear you're not doing well. :( I"m down to every 5 weeks also. Doc doesn't want to shorten the time any more than that. Like you, that last week before the infusion isn't fun. :crying:
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Re: Crohn's and Colitis & GastroIntestinal Joys of Life - Our Very Own Thread

#294

Post by sad-cafe » Sun Oct 16, 2016 12:21 pm

Plutodog wrote:I'm sure sorry to hear you're doing so poorly, Sad Cafe. Is there anything we can do?
other than a miracle -either winning the lottery-getting healed- I don't think there is anything to do I just try to exist

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Re: Crohn's and Colitis & GastroIntestinal Joys of Life - Our Very Own Thread

#295

Post by Lani » Sun Oct 16, 2016 4:39 pm

sad-cafe wrote:
Plutodog wrote:I'm sure sorry to hear you're doing so poorly, Sad Cafe. Is there anything we can do?
other than a miracle -either winning the lottery-getting healed- I don't think there is anything to do I just try to exist
:bighug:
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Re: Crohn's and Colitis & GastroIntestinal Joys of Life - Our Very Own Thread

#296

Post by SueDB » Wed Oct 26, 2016 2:39 pm

mmmmgood2.jpg
Finally, it's Remicade infusion day 8-) . I get infused (sounds kinda dirty, eh?) every 5 weeks. This month it held for 4 1/2 weeks...was really looking forward to today and feeling better. I tend to start feeling better about an hour after the stuff has been dropped in.

It's been a really active and very stressful month for us as Ms SueDB :flirty: broke a bone at the knee joint. She can't drive and has had ortho/MRI etc appointments in addition to her kidney appointments. Hopefully, things will ease up in November. Pain & Torture :eek2: ..errr Physical Therapy appointments for her will be on the menu in about 2 to 3 more weeks... :roll:

I hope the local Native Am Casino has complete turkey dinners for Thanksgiving again. It would be such a help this year. I hope the Remicade :-D holds out as my next infusion is the Wednesday after Turkey Day. :pray: :o

Keeping up the good fight though... :radioactive: Crohn's really sucks :sick: . Makes me feel like :shit:
:boxing: :boxing: :boxing:
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Re: Crohn's and Colitis & GastroIntestinal Joys of Life - Our Very Own Thread

#297

Post by sad-cafe » Sat Nov 05, 2016 1:38 am

I am going to persue the districts disability clause. I just can not do this.

I have not been right since school has started

Stress has been through the roof. I throw up every time I hit the curvy road to our building. The kids are so disrespectful, rude, thieving, hateful and ignorant. They don't want to learn they just want to jack around but if an admin does a walk though, the teacher will be in trouble.

I had a kid cut his pubic hairs in class and another kid freaked out. I sent the pubic hair kid out and then got in trouble for sending the wrong one out... WTF???

I am going to call on Monday and ask for disability papers to be sent. I think I can get a year at 70% of my salary

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Re: Crohn's and Colitis & GastroIntestinal Joys of Life - Our Very Own Thread

#298

Post by sad-cafe » Sat Nov 05, 2016 1:46 am

I was probably born with this god awful disease, but it exploded when I was teaching in a middle school being run by nuts. I had wonderful kids and had some great teaching moments. That school was changed and I moved to an alternative school for kids that had been expelled and we were their last chance. I thrived there...done teaching by 1 pm and the curriculum was online so very little grading.

Due to the sad state of Kansas :madguy: my program was gutted and I was sent back into mainstream middle school. WiTH NO DISCIPLINE and if the kids are off task when a walkthrough occurs, it is obviously the teacher's fault.

I can not do this anymore. I have lost 18 lbs since Aug. I am extremely tired and my stomach is in knots


I just need to be on disability

I can't do it anymore

anyone have an extra 100K ??? :cantlook:

hubby says if we can pay our student loans off and bills I can retire

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Re: Crohn's and Colitis & GastroIntestinal Joys of Life - Our Very Own Thread

#299

Post by Tiredretiredlawyer » Sat Nov 05, 2016 11:27 am

sad-cafe wrote:I was probably born with this god awful disease, but it exploded when I was teaching in a middle school being run by nuts. I had wonderful kids and had some great teaching moments. That school was changed and I moved to an alternative school for kids that had been expelled and we were their last chance. I thrived there...done teaching by 1 pm and the curriculum was online so very little grading.

Due to the sad state of Kansas :madguy: my program was gutted and I was sent back into mainstream middle school. WiTH NO DISCIPLINE and if the kids are off task when a walkthrough occurs, it is obviously the teacher's fault.

I can not do this anymore. I have lost 18 lbs since Aug. I am extremely tired and my stomach is in knots


I just need to be on disability

I can't do it anymore

anyone have an extra 100K ??? :cantlook:

hubby says if we can pay our student loans off and bills I can retire
Dear Sad: Think about retiring now or getting on disability. You are surviving not living. I retired last December due to complications from fibromyalgia (which is genetic) which include depression, anxiety, irritable bowel syndrome, migraines, severe muscular pain and fatigue- not all at once but something at some level daily. I had not planned to retire for another 2 years, when I turned 66, but my body said it had enough and wouldn't provide the necessary alertness and energy. My attitude is much better. My health still gets in the way of doing things, but I realize I can't do what I did before even though I loved it and was a typical type A. My condition, while it pisses me off, is not potentially terminal as is yours.

The student loan issue can be worked out through a lawyer or the program itself especially if you qualify for Social Security Disability or disability through any program your school might have.

I sympathize and empathize with you. Please take care of yourself. :brokenheart:

You take care, too, Sue DB! :lovestruck:
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Re: Crohn's and Colitis & GastroIntestinal Joys of Life - Our Very Own Thread

#300

Post by SueDB » Sat Nov 05, 2016 7:57 pm

If you have been paying into Social Security, you should be able to file for SS disability. They turned me down the first time (they seem to do that to EVERYONE). Once you are turned down once, you can get a lawyer to take your case for 30% of your back benefits or 6K whichever is the lesser. It helps if you are 55 years old or older or nearing 55) as you aren't a candidate for "retraining as a parking lot attendant" (one of the favorites that the Vocational folks try to stick you with).

If you were ever in the Military or one of the other US Uniformed Services (Public Health etc) send me a PM.

Don't know squat about Railroad Retirement/disability though.
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