Terminal Stage of Crohn's...

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GDen
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   Posted 10/19/2009 12:27 AM (GMT -6)   
Inspiring story of a climber who lived with Crohn's since 1988. However, the press spreads misinformation about Crohn's:
Somebody said...
It was the same toughness that kept him alive for over a decade while in the terminal stage of Crohn's.

That's a new one--I'd never heard of a "terminal stage of Crohn's"!

www.alpinist.com/doc/web09x/newswire-kyle-copeland

ivy6
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   Posted 10/19/2009 12:42 AM (GMT -6)   

MMMNAVY
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   Posted 10/19/2009 4:37 AM (GMT -6)   
Humm I do not know. I have never heard of it put that way (I think we do need to get some sort of staging with crohns) but evidently he did die from it after having alot of health problems.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


FitzyK23
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Date Joined May 2005
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   Posted 10/19/2009 8:57 PM (GMT -6)   
Since people can die of crohns it would make sense that near the end one would have "terminal" crohns.
27 Year old married female lawyer.  Diagnosed w/ CD 5 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant but can handle anything cultured and do well w/ lactose pills and lactaid. For Crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night.  I take xanax prn for situational anxiety (aka no easy bathroom access). 


GDen
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Date Joined May 2009
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   Posted 10/19/2009 9:10 PM (GMT -6)   
So what exactly is "terminal Crohn's" then? And when people "die of Crohn's", what exactly kills them?

Sami'sMom
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Date Joined Oct 2009
Total Posts : 32
   Posted 10/19/2009 9:31 PM (GMT -6)   
I don't know what terminal Crohn's is. Unless it's referred to that way because there is no known cure for Crohn's. I don't know, just guessing.
 
Correct me if I'm wrong but from my understanding it is the complications that can kill a person with Crohn's. A ruptured appendix, cancer of the bowel, intestinal hemorrhage, obstruction, bowel perforation, acute pancreatitis, liver failure, dilatation of the colon are some of those complications.
Mom to 5 special children
 14yr old- GAD, PTSD, ODD, LD
 12 yr old- Crohn's Disease-total Colectomy Feb 09, PTSD, Dystymia, JRA, Asthma
 11 yr old- Globally Developmentally Delayed, Low Cognitive Functioning, PTSD
 10 yr old(almost)- Epilepsy, Unspecified Social/Emotional Disorder, PTSD, LD
 32mth old-Bright and Happy


MAG102886
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Date Joined Jul 2008
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   Posted 10/19/2009 9:33 PM (GMT -6)   
I would assume Terminal Crohns is when its very much evident that medication or diet will no longer help you and you're going completely down hill with an end result as death -- the same as any other terminal condition.  You could die from dehydration, lack of vitamins ect ect.



Dianogsed with Crohns: At 16 years old. 22 years old now.
Surgeries:2 Bowel Resections, Gallbladder Removed, 3 Abscess Cleanings
Current Meds: Cimzia, Methorexate, Vitamin B12 (injections), Nexium.
Next Surgery: Sept 4, 2009 to Take Down Abdominal Fistula!!  (On hold until current flare is under control, boo!)
 
www.myspace.com/mastermelissa

Post Edited (MAG102886) : 10/19/2009 8:36:17 PM (GMT-6)


GDen
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Date Joined May 2009
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   Posted 10/19/2009 9:42 PM (GMT -6)   
Right, it's the complications that kills some Crohn's patients. When I was first diagnosed I saw several obits that stated the deceased had "died of Crohn's" and it kind of freaked me out. But I asked my GE and he said they died of complications.

I don't think there's any such thing as "terminal Crohn's". But the disease can progress to the point where a patient has so little intestines and/or they're so heavily scarred, life becomes much more difficult.

The climber's obit stated he also suffered a stroke, which I've never heard related to Crohn's, and also a staph infection, which could very likely have happened during hospitalization for Crohn's or perhaps during any of the numerous blood test draws.

Sniper
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Date Joined Feb 2004
Total Posts : 6518
   Posted 10/19/2009 10:57 PM (GMT -6)   
I just lost a good friend to crohns. He died from a high fever because a tick bit him. They can call it whatever they want to but I know it was crohns that killed him..
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


LMills
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Date Joined Apr 2008
Total Posts : 1753
   Posted 10/20/2009 12:07 AM (GMT -6)   
GDen said...
So what exactly is "terminal Crohn's" then? And when people "die of Crohn's", what exactly kills them?


Someone from a group I used to go to almost died from literally wasting away, a symptom virtually all of us have gone through. He wasn't able to get medical care, lived alone, etc. By some miracle someone found him.
Diagnosed with Crohn's in May of 2008.
Currently taking: Prednisone, pentasa, omeprazole, and humira. Using probiotics and a multivitamin.
bonniegriffith.blogspot.com/
Learning how to live again.
"He who has a why to live for can bear with almost any how."


ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 10/20/2009 12:57 AM (GMT -6)   

Sami'sMom
Regular Member


Date Joined Oct 2009
Total Posts : 32
   Posted 10/20/2009 9:49 AM (GMT -6)   
I'm sorry to hear about the loss of your friend Sniper.
Mom to 5 special children
 14yr old- GAD, PTSD, ODD, LD
 12 yr old- Crohn's Disease-total Colectomy Feb 09, PTSD, Dystymia, JRA, Asthma
 11 yr old- Globally Developmentally Delayed, Low Cognitive Functioning, PTSD
 10 yr old(almost)- Epilepsy, Unspecified Social/Emotional Disorder, PTSD, LD
 32mth old-Bright and Happy


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 17820
   Posted 10/20/2009 7:16 PM (GMT -6)   
Terminal crohn's isn't the correct term to use, crohn's is chronic, not terminal, people die from complications of crohn's but it's not considered "terminal" like some forms of cancer, it's considred chronic...crohn's is known as the "cutting away" disease for many patients and of course when there's only so much that can be cut away that would increase your risk of dying from crohn's (this is quite rare for the majority of CDers though). Cancer can be terminal, crohn's is chronic. Terminal means they've done all they can but the patient will still die as a result of thier disease (like with cancer), chronic means that you've got a disease for life but will more than likely still live a very long life with your disease.

:)


bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6923
   Posted 10/20/2009 7:28 PM (GMT -6)   
I disagree.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


pillpopper
Regular Member


Date Joined Jan 2009
Total Posts : 209
   Posted 10/20/2009 8:24 PM (GMT -6)   
Hey pb4,
I'm hoping for the very long life outcome.
When I don't have any options, I'll use that title on whatever takes me down.
B-12injections,Pentasa,Loperamide,Entocort,6mp,Hydrochlorothiazide,8 week
Remicade,vitamin-D,Terbinafine,
Remission since surgery
and 8-week Remicade.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 17820
   Posted 10/20/2009 10:13 PM (GMT -6)   
A terminally ill person has no expectation of a cure for his/her disease or illness, but still requires a lot of care and comfort. Knowing what a dying person understands about his/her condition, as well as his/her fears, feelings, emotions, and physical changes that occur, may help those around them make the diagnosis and final process easier to cope with.

terminal definition ter·mi·nal (tʉr′mə nəl)

adjective

1.of, at, or forming the end, extremity, or terminus of something terminal feathers
2.occurring at the end of a series; concluding; closing; final a terminal payment

********3.designating, of, or having a fatal disease in its final stages terminal cancer, to be diagnosed as terminal*********

4.Informal extreme or excessive terminal cuteness
5.having to do with a term or established period of time; occurring regularly in each term
6.of, at, or forming the end of a transportation line
7.Bot. growing at the end of a stem or branch a terminal bud
 

What is Terminal Illness?

Terminal illness means any illness which ends in death. There is no possibility of recovery. Clinicians’ definition differs from terminal illness as defined in DLA / AA regulations.

  • In DLA / AA regulations we define this as more likely to die of their disease in the next six months than not.
  • Clinicians define terminal illness as any illness that will end in death.

A person may be terminally ill according to a clinician’s definition but not be terminally ill according to regulations because they are expected to live longer than six months. This can be difficult to determine and it is recommended that all such cases be referred to medical services.

It is important to recognise that some people may function well during a terminal illness. They may be able to walk about, cook meals and care for themselves. Disability may only prevent them from carrying out these activities in the final few weeks or days of their illness. All treatment given at this stage will aim to keep them as independent, pain free and mobile as possible. A significant number will be receiving palliative chemotherapy during their final six months and this may be part of a clinical trial. Being part of a clinical trial has no bearing on whether a person is terminally ill nor does it indicate they are more likely to recover from their disease. Terminally ill patients often take part in clinical trials.

 
chron·ic <script>play_w2("C0340300")</script>  ="return m_over('Click for pronunciation key')" onmouseout=m_out() onclick=pron_key()>(krVIEW IMAGEnVIEW IMAGEVIEW IMAGEk)
adj.
1. Of long duration; continuing: chronic money problems.
2. Lasting for a long period of time or marked by frequent recurrence, as certain diseases: chronic colitis.
3. Subject to a habit or pattern of behavior for a long time: a chronic liar.


:)


bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~

Post Edited (pb4) : 10/20/2009 9:20:05 PM (GMT-6)


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 17820
   Posted 10/20/2009 10:14 PM (GMT -6)   
MMM, you believe that crohn's is a terminal disease?

:)
bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 17820
   Posted 10/20/2009 10:25 PM (GMT -6)   
"Crohn's disease is a serious, chronic, and recurring disease. Fortunately, with good medical care, most patients do well most of the time. Crohn's disease is serious, but is not considered to be a terminal illness. The rare deaths are associated with the risks of surgery. With proper use of medications and appropriately timed surgery, most people with Crohn's disease can keep the disease in check most of the time."

From this link...
 
 
 
:)


bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~


andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 10/20/2009 10:50 PM (GMT -6)   
I agree pb4 crohns can be chronic not terminal. It can be kept under control with meds and when it reaches chronic it often requires radical surgery

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 10/21/2009 2:14 AM (GMT -6)   
pb, I don't think it's necessary to argue or to cut and paste huge swathes of information from the internet (which, by the way, is against forum rules because it uses unnecessary and expensive server space). I'm pretty sure you'll find that Navy is more than familiar with the definition of terminal illness.

I would be interested to know why Navy feels that Crohn's is a terminal illness, though.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 10/21/2009 2:46 AM (GMT -6)   
That's awful about your uncle, tsitodowg. I'm really sorry.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 17820
   Posted 10/21/2009 12:45 PM (GMT -6)   
ivy, I was only trying to find accurate explanations of what I was trying to say (sometimes when I try and explain something it doesn't always come out the way I mean it to)...

and trust me, I'm well aware of the term "terminal illness" as well, lost a sister-in-law to terminal cancer and my father.

tsitodowg, I'm sorry for your uncle as well, my brother-in-law had schizophrenia and from all the meds he was on (was in an institution for 2 decades) ended up having a seizure and found brain dead in his room, they put him on support and ended up passing on my hubby's birthday (it was his brother). I agree that CD can kill you but as you and I both mention, it's not considered a "terminal" disease.

:)
bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 10/21/2009 3:31 PM (GMT -6)   
pb, why you cut and paste is irrelevant. I have asked you not to do it, for the sake of saving server space. Please don't do it again.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6923
   Posted 10/21/2009 6:29 PM (GMT -6)   
Ok. I am sorry I did not have the energy last night to explain. Generally, crohn's is a chronic illness, but it can be a terminal illness in rare cases. I use the example I have been taught: The US government has decided that having an MD say less then six months to live is considered terminal illness. As T pointed out people do die from crohns (i.e. blood loss due to crohns), just like people die from cancer (organ failure due to cancer).
There seems to be a bit of confusion about intersecting COD's. There is a reason why illness, especially, usually uses the multipule lines of COD.
There is also the philosphical aspect and I cannot remember what movie this is from, but my DI used it.
"Didn't you know you were terminal from the moment you took your first breath."

Hopefully we can all move on from this, because it is kinda depressing me.

So to cheer myself up and others, a line from one my favorite movies:

WoodersonYou just gotta keep livin' man, L-I-V-I-N.

Slow ride...hey at least it is a good song to have in your head


Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 10/21/2009 5:42:28 PM (GMT-6)


AWarrior
New Member


Date Joined Oct 2009
Total Posts : 1
   Posted 10/21/2009 8:09 PM (GMT -6)   
Wow, depressing topic, yet as a survivor of Mr. Crohn's, as I call him. lol. I do believe the terminal "term" is of course, coming from Crohn's being named "Terminal Ileitis" in medical diagnoses.
In 1989, my mother died of complications from Crohn's thus the disease is indeed capable of causing death. However, this was before the wonderful toxic drugs (haha) that we have today, that prolong our lives and allow us to manage our condition. Also...you can only get disablity if your "illness" can eventually result in your death. So, by these definitions, yes, it's a terminal condition. Although, I know someday it will try to "take me life"...I choose to fight every step of the way, to win every battle, to try with all my heart and soul to move forward and to never let Mr. Crohn's take my happiness away. My name is April, I was diagnosed with Mr. C in 2005, at 41 years old. A shock to me and my World. It has changed my life, as I knew it, forever. Yet, it also brought me gifts I never knew I had...to give to myself and to others. I do not regret one moment of this condition. I only hope that I continue to listen to my body and keep her going for another 40 years:) I thank you for being here, for listening and for sharing your lives with me. Thanks:) I hope this made sense...it's Remicade week..lol. Peace Peeps.
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