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06-02-2016, 08:47 AM   #1
usoagn
 
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I fear the Crohn diagnosis as hell...

Hello,

I'm a 20 years old male. I've a huge history of GI issues. Recently, in the last 2 years I had many infections (Yersinia, Campylobacter 2 times, Clostridium Difficile 12 times (with relapses)). I'm currently clear but I'm still experiencing massive symptoms. (the onset is considered apart from infections, since infections can cause these)
- Bowel movements at least 10 times a day. (onset November 2015)
- Diarrhea. (onset : 2013, first infection)
- Massive amount of mucus in the stool. (onset : February 2016)
- Constipation. (onset Mars 2016)
- Extreme exhaustion. (onset March 2016) ( I tend to sleep between 12 and 18 hours daily)
- Headache. (onset March 2016)
- Iritis. (onset May 2016)
- Fever (between 37.9C and 38.5C in Celsius) (not always) (onset March 2016)
- Joint Pain. (onset April 2016)
- Great Right illiac fossa pain and mass. (onset April 2016)
- Global gastro intestinal pain (onset 2013)
- Dyspepsia. (onset December 2015)
- Nausea. (onset December 2015)
- Feeling like if I were high, can't concentrate on anything, I just lose the track of my thoughts. (onset March 2016)
- Rapid weight loss (Since July 2014 I've lost more than 40 kilos (I was 160kg (I know that's heavy) and I'm barely 118kg now))

I really fear I have Crohn's Disease. I've suffered so much from infections and stuff, and I don't want to live a life of pain.

I've seen GIs, but they've first blamed immune system for the infections. After many check up, nothing was found.
Recently, in May 2016 my GI told me that Crohn's Disease was deemed "likely".
He wants to do a colonoscopy but I fear it might kill me. I have asthma (really severe, oral corticoid dependant), tachycardia, NAFLD, brain and neck increased angiogenesis, and many additional blood vessels in my throat (you can both see and feel them) (since most are visible and can be touched inside the throat, I fear that a potential intubation will lead lead to massive bleeding), I've had a really bad experiences with anesthesia (younger (7) I had an appendectomy, I was healthy back then, nothing at all, not overweight but I took 2 DAYS to wake up from anesthesia).

I've found my current symptoms to be relieved by taking the extra Flagyl I had for CD infections, and oral corticosteroids I have for my asthma attacks.

My symptoms often come and go. I can be nearly healthy some days.


We did a recto sigmoidoscopy without anesthesia to check what was happening and : mucus, chronic transmural inflammation was found in the rectum, nothing in the sigmoid, and inflammation again in the transverse colon.

Blood Tests showed : increased CRP (11), increased WBC count (1.7 ULN), anemia, low hematocrit count, high transaminases (1.3 ULN), extremely high Creatine phosphokinase (40 ULN). (ULN = upper limit of normal)


Can you help ? I'm really anxious and in pain.

Thanking you in advance. Any help, anything will be greatly appreciated.




P.S : I'm not an english speaker, did what I could. I hope you can understand me.
06-02-2016, 09:19 AM   #2
ronroush7
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Welcome. Have you shared with your doctor your fears about the colonoscopy? Maybe they can come up with some alternative.
06-02-2016, 09:43 AM   #3
usoagn
 
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I did. It was unsuccessful though.
06-02-2016, 09:45 AM   #4
ronroush7
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Maybe you should seek out another doctor?

06-02-2016, 09:46 AM   #5
usoagn
 
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I went to three GIs and unfortunately nothing...
06-02-2016, 09:53 AM   #6
usoagn
 
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But the two last I've seen told me that Crohn was really likely.
06-02-2016, 10:33 AM   #7
usoagn
 
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I really fear Crohn or an even worse diagnosis (severe Crohn..; etc...) is there any hope left ?
06-02-2016, 10:44 AM   #8
hcrum87hc
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Never stop hoping and praying. There's always hope. A lot of your symptoms could certainly be attributed to Crohn's Disease, but it's hard to say without a biopsy. Have you had any imaging tests done? I've had a few MRE's that show inflammation and scarring in the small bowel. It's not a substitute for a biopsy, but it can be a way to gather more information.
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Blessed is he who trusts in the Lord, whose confidence is in Him. Jeremiah 17:7.

Officially diagnosed with Crohn's Disease in June, 2014 2 weeks before 27th birthday after ER visit due to partial blockage (stricture).

Current Meds:
Humira-40 mg every other week
Imuran-150 mg/day

Surgeries: Ileocecectomy 7/13/16 removed 60cm of small intestines.

Status: All inflamed and strictured intestines removed. All remaining intestines are currently healthy.
06-02-2016, 11:13 AM   #9
ronroush7
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Maybe the anesthesiologist van help when they do the actual colonoscopy.

06-02-2016, 11:15 AM   #10
usoagn
 
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Well I've already seen an anesthesiologist, and honestly I left him less reassured than I was before.

I met him. He told me he was in a hurry and I was too young to have any anesthesia related issues. I had not even enough time to tell him I'm asthmatic and have tachycardia.

Though I know other people who didn't like him too.

Maybe I should see another anesthesiologist ?
06-02-2016, 11:40 AM   #11
Scipio
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Colonoscopy usually does not require full anesthesia - just "twilight sleep" to remove the discomfort. And it certainly does not require intubation.

Work with the GI and the anesthesiologist to find a solution that will work for you. It's important find out for sure whether you have Crohn's so that you can receive the correct treatment. If it turns out you do have Crohn's your life will likely improve dramatically once the therapy kicks in and the disease is brought under control.

A diagnosis of Crohn's is never good news, but it's much better than actually having Crohn's but not having a diagnosis. In that case you are stuck suffering in limbo with no clear path forward. If you can get a correct diagnosis then the path forward becomes much clearer and relief is on its way.
06-02-2016, 11:42 AM   #12
usoagn
 
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Never stop hoping and praying. There's always hope. A lot of your symptoms could certainly be attributed to Crohn's Disease, but it's hard to say without a biopsy. Have you had any imaging tests done? I've had a few MRE's that show inflammation and scarring in the small bowel. It's not a substitute for a biopsy, but it can be a way to gather more information.
Well I had biopsies showing chronic colonic inflammation both in the transverse colon and in the rectum. They were non specific Crohn / UC / anything else. But nothing in the sigmoid (Crohn ???)
I still want to hope my condition will improve someday but...

No, no imaging tests, but one GI told me to have an entero scanner done. Still weeks away though.
06-02-2016, 11:43 AM   #13
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Once they get you diagnosed and on the right medicines it will. Be encouraged.

06-02-2016, 02:41 PM   #14
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You wouldn't need to be intubated since colonoscopies are done under twilight sedation. In some countries, not even sedation is used just pain meds

My son has asthma and during a few of his colonoscopies he has also been dealing with tachycardia due to anemia, vitamin deficiency or chronic inflammation.

His asthma isn't deemed as serious as yours but there is a mom on here who has a son with severe asthma that under goes colonoscopies etc with twilight sedation. I'll tag her and hopefully she'll be along, my little penguin.

My son is prepping today for his 3Rd colonoscopies since last July. When the anesthesiologist called to go over his questions pretty scope he always includes the asthma question and we address everything then.

The other posters are right. You have a better chance of living a fuller life without symptoms if you get the dxed so you can get on the right treatment for whatever is affecting you.
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C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
06-02-2016, 05:37 PM   #15
my little penguin
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My kiddos asthma has been moderate at times but is considered mild persistent at the present.
He has only had upper and lower endoscopy done at the same time so he is always intubated for the upper scope part.

I can say he always has had twilight sleep( propofol works best for him)
Versed plus other meds weren't as good for him.

As far as your asthma have you tried all the different versions of meds including the combo inhaled corticosteroids plus leukotrienes.
Sometimes different brands help
Also do you have seasonal allergies - sometimes allergies shots can reduce the load and help get the asthma under better control

Was your asthma under control at age 7 when you had surgery ?

As far as crohns - there are immunodeficiency which mimic crohns it is often seen in little kids who get a lot of infection
Chronic granulomas disease is one plus more than a few others

http://geneticslab.emory.edu/tests/MM160

I think the list is on that site

Look up very early onset Ibd
That should get you a list
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06-03-2016, 07:38 AM   #16
usoagn
 
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Colonoscopy usually does not require full anesthesia - just "twilight sleep" to remove the discomfort. And it certainly does not require intubation.
You wouldn't need to be intubated since colonoscopies are done under twilight sedation. In some countries, not even sedation is used just pain meds
No, not in my country at least. I talked with my GIs, and they told me that colonoscopy was done under full general anesthesia and that is was the same kind of anesthesia used for any operation. I asked if I could have sedation instead (or a kind of sedation I found browsing the internet that makes you remember nothing of the procedure even though you're awake). But no. Maybe should I still seek another GI and anesthesiologist ?

Work with the GI and the anesthesiologist to find a solution that will work for you. It's important find out for sure whether you have Crohn's so that you can receive the correct treatment. If it turns out you do have Crohn's your life will likely improve dramatically once the therapy kicks in and the disease is brought under control.
Now, supposing I do have Crohn's, I'd like to know more about what I can expect from the treatment. Are the symptoms just milder or can the pain... etc... go away ? How do you feel in remission ? I imagine there are very different stories here and that it depends on how severe Crohn's is but I'd like to know what is reasonable. Is there a real great improvement ? Can you be healthy ?

A diagnosis of Crohn's is never good news, but it's much better than actually having Crohn's but not having a diagnosis. In that case you are stuck suffering in limbo with no clear path forward. If you can get a correct diagnosis then the path forward becomes much clearer and relief is on its way.
I know that will probably sound ridiculous but as long as I'm not dxed I still can not have Crohn's. If I do have Crohn's and am diagnosed, I will never be able to hope to not have Crohn's again. I fear my own psychological reactions to a Crohn's diagnosis. I'd like not to live in constant fear of complications too.

My son has asthma and during a few of his colonoscopies he has also been dealing with tachycardia due to anemia, vitamin deficiency or chronic inflammation.
So my tachycardia for which I have no cause currently, could be caused by Crohn's ?


His asthma isn't deemed as serious as yours but there is a mom on here who has a son with severe asthma that under goes colonoscopies etc with twilight sedation. I'll tag her and hopefully she'll be along, my little penguin.
My son is prepping today for his 3Rd colonoscopies since last July. When the anesthesiologist called to go over his questions pretty scope he always includes the asthma question and we address everything then.
The other posters are right. You have a better chance of living a fuller life without symptoms if you get the dxed so you can get on the right treatment for whatever is affecting you.
First, I hope everything will be alright for your son. My asthma is quite severe but allergies related and these allergies when doing blood tests are very high. For one allergy I have the biologist told me that he had never seen such a high result before. Therefore depending on the season I don't always need oral corticosteroids.


My kiddos asthma has been moderate at times but is considered mild persistent at the present.
He has only had upper and lower endoscopy done at the same time so he is always intubated for the upper scope part.
I was told that however upper endoscopy could be done on only twilight sleep (and without intubation) but without lower endoscopy, is it any useful ?

As far as your asthma have you tried all the different versions of meds including the combo inhaled corticosteroids plus leukotrienes.
I've never been on leukotrienes. I'll do some research on this.

Also do you have seasonal allergies - sometimes allergies shots can reduce the load and help get the asthma under better control
I have MANY seasonal allergies and they are thought to be causing my asthma, indeed and I take antihistamines H2 but that only affects my rhinitis.

Was your asthma under control at age 7 when you had surgery ?
That's quite interesting because from age 2 to 5 I was asthmatic. Asthma just disappeared until teenage (12) and is always worsening since age 15.

As far as crohns - there are immunodeficiency which mimic crohns it is often seen in little kids who get a lot of infection
Interesting. Is it possible for these diseases not to show up on immunity tests ? I'll do some research.





Anyway, many thanks for your help. I greatly appreciate it in what is a really hard time for it and you've brought up many interesting subjects to tackle with my doctors.

I hope the best for you all.
06-03-2016, 08:02 AM   #17
ronroush7
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I would say so.

06-03-2016, 09:51 AM   #18
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I had very mild anesthesia during my colonoscopy, in fact I was aware and talking to the doctor the whole time, watching the video and asking questions!

The office told me that anesthesia isn't even necessary, which I may take them up on since it's very inconvenient for me to find someone to go with me to the appt.

Granted, it got quite painful at certain points, which the doctor explained was because of air being pushed into the bowels. Felt like someone pushing really hard into my stomach.
06-03-2016, 10:57 AM   #19
Scipio
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"Now, supposing I do have Crohn's, I'd like to know more about what I can expect from the treatment. Are the symptoms just milder or can the pain... etc... go away ? How do you feel in remission ? I imagine there are very different stories here and that it depends on how severe Crohn's is but I'd like to know what is reasonable. Is there a real great improvement ? Can you be healthy ?

I know that will probably sound ridiculous but as long as I'm not dxed I still can not have Crohn's. If I do have Crohn's and am diagnosed, I will never be able to hope to not have Crohn's again. I fear my own psychological reactions to a Crohn's diagnosis. I'd like not to live in constant fear of complications too."


If the Crohn's is actually there then avoiding a diagnosis is not going to help at all and will likely do just the opposite. Delaying the start of much-needed treatment will increase the cumulative damage to your gut. Crohn's, unfortunately, has an objective reality apart from your knowledge of it. Avoiding knowing about it or not believing in it will not stop the disease one bit.

One thing to understand about Crohn's is that every case is somewhat different. So no one can promise you exactly what your response to the medication will be or what exactly what your quality of life will be.

There are many treatment options, and it sometimes takes the GIs some trial and error to find the best combination of drugs and diet to control your disease. But we are fortunate to live in a time when many effective medications are available and more coming on all the time. Many Crohn's patients achieve full remission and feel more or less normal for years at a time. Relapses and flares do occur, requiring adjustments to the therapy. But again, there are fortunately many options.

If the Crohn's is actually there then getting diagnosed does not constitute crossing some sort of Rubicon. A firm diagnosis means that you've previously crossed that Rubicon and just didn't know it at the time. And now that you know about it you and your GI are enabled to take appropriate action to improve your health and your life.
06-03-2016, 11:04 AM   #20
ronroush7
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"Now, supposing I do have Crohn's, I'd like to know more about what I can expect from the treatment. Are the symptoms just milder or can the pain... etc... go away ? How do you feel in remission ? I imagine there are very different stories here and that it depends on how severe Crohn's is but I'd like to know what is reasonable. Is there a real great improvement ? Can you be healthy ?

I know that will probably sound ridiculous but as long as I'm not dxed I still can not have Crohn's. If I do have Crohn's and am diagnosed, I will never be able to hope to not have Crohn's again. I fear my own psychological reactions to a Crohn's diagnosis. I'd like not to live in constant fear of complications too."


If the Crohn's is actually there then avoiding a diagnosis is not going to help at all and will likely do just the opposite. Delaying the start of much-needed treatment will increase the cumulative damage to your gut. Crohn's, unfortunately, has an objective reality apart from your knowledge of it. Avoiding knowing about it or not believing in it will not stop the disease one bit.

One thing to understand about Crohn's is that every case is somewhat different. So no one can promise you exactly what your response to the medication will be or what exactly what your quality of life will be.

There are many treatment options, and it sometimes takes the GIs some trial and error to find the best combination of drugs and diet to control your disease. But we are fortunate to live in a time when many effective medications are available and more coming on all the time. Many Crohn's patients achieve full remission and feel more or less normal for years at a time. Relapses and flares do occur, requiring adjustments to the therapy. But again, there are fortunately many options.

If the Crohn's is actually there then getting diagnosed does not constitute crossing some sort of Rubicon. A firm diagnosis means that you've previously crossed that Rubicon and just didn't know it at the time. And now that you know about it you and your GI are enabled to take appropriate action to improve your health and your life.
Agree.

06-03-2016, 11:37 AM   #21
usoagn
 
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I had very mild anesthesia during my colonoscopy, in fact I was aware and talking to the doctor the whole time, watching the video and asking questions!

The office told me that anesthesia isn't even necessary, which I may take them up on since it's very inconvenient for me to find someone to go with me to the appt.

Granted, it got quite painful at certain points, which the doctor explained was because of air being pushed into the bowels. Felt like someone pushing really hard into my stomach.

Unfortunately my GIs and anesthesiologists said no to that kind of procedure.
06-05-2016, 07:58 AM   #22
my little penguin
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As far as allergy control
Ds takes Dymista ( nasal spray with an antihistamine in it)
Zantac h2 blocker
Patanol (eye drops) plus fluromethylasolone eyes drops
Zyrtec
Singulair
And when his allergies were really bad - allergy shots weekly/monthly for 6-7 years
Plus a second antihistamine Claritin in the same day
Ds was in the beyond severe category for allergies
For a very long time
Can you see an allergist ??
06-05-2016, 03:40 PM   #23
xmdmom
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I'm sorry you are dealing with all of this! While not getting diagnosed allows you to not know you have Crohn's ( "I still can not have Crohn's"), it also allows your condition to potentiallyworsen because you are undiagnosed and not getting appropriate therapy.

I wish I had some answers for you -- I only have a few thoughts.

Who diagnosed your increased angiogenesis and is there a name for it? Is it from birth? Have you seen and ENT doctor? An ENT could give you guidance about intubation and your blood vessel condition.

An MRE MR enterography seems like a good non-invasive way to get more information.

How low is your hemoglobin? That could be a cause of your increased heart rate.

Uveitis and reactive arthritis are listed as possible complications of yersinia and campylobacter.

Sending positive healing thoughts your way. Hope you find answers and relief of your symptoms soon.
06-05-2016, 05:16 PM   #24
usoagn
 
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"Now, supposing I do have Crohn's, I'd like to know more about what I can expect from the treatment. Are the symptoms just milder or can the pain... etc... go away ? How do you feel in remission ? I imagine there are very different stories here and that it depends on how severe Crohn's is but I'd like to know what is reasonable. Is there a real great improvement ? Can you be healthy ?

I know that will probably sound ridiculous but as long as I'm not dxed I still can not have Crohn's. If I do have Crohn's and am diagnosed, I will never be able to hope to not have Crohn's again. I fear my own psychological reactions to a Crohn's diagnosis. I'd like not to live in constant fear of complications too."


If the Crohn's is actually there then avoiding a diagnosis is not going to help at all and will likely do just the opposite. Delaying the start of much-needed treatment will increase the cumulative damage to your gut. Crohn's, unfortunately, has an objective reality apart from your knowledge of it. Avoiding knowing about it or not believing in it will not stop the disease one bit.

One thing to understand about Crohn's is that every case is somewhat different. So no one can promise you exactly what your response to the medication will be or what exactly what your quality of life will be.

There are many treatment options, and it sometimes takes the GIs some trial and error to find the best combination of drugs and diet to control your disease. But we are fortunate to live in a time when many effective medications are available and more coming on all the time. Many Crohn's patients achieve full remission and feel more or less normal for years at a time. Relapses and flares do occur, requiring adjustments to the therapy. But again, there are fortunately many options.

If the Crohn's is actually there then getting diagnosed does not constitute crossing some sort of Rubicon. A firm diagnosis means that you've previously crossed that Rubicon and just didn't know it at the time. And now that you know about it you and your GI are enabled to take appropriate action to improve your health and your life.
Thank you for your answer,

That's not the only issue I have with being diagnosed but I reading Crohn patients stories and medical records I felt like : "Well anyway, they've been on a bunch of medications, they still have a lot of pain and complications then treatment must be useless. If it can't be treated and I can't do anything against it, why not to just hope it is not it ? Being diagnosed won't help me." The other issue is Crohn being an incurable disease, but if being diagnosed does really help me and if there are effective treatments... well... even though I'm not mentally ready for a firm diagnosis, I believe that it's probably the way to go.
06-05-2016, 05:19 PM   #25
ronroush7
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Thank you for your answer,

That's not the only issue I have with being diagnosed but I reading Crohn patients stories and medical records I felt like : "Well anyway, they've been on a bunch of medications, they still have a lot of pain and complications then treatment must be useless. If it can't be treated and I can't do anything against it, why not to just hope it is not it ? Being diagnosed won't help me." The other issue is Crohn being an incurable disease, but if being diagnosed does really help me and if there are effective treatments... well... even though I'm not mentally ready for a firm diagnosis, I believe that it's probably the way to go.
There is research going on all the time so look forward to hope.

06-05-2016, 05:21 PM   #26
usoagn
 
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As far as allergy control
Ds takes Dymista ( nasal spray with an antihistamine in it)
Zantac h2 blocker
Patanol (eye drops) plus fluromethylasolone eyes drops
Zyrtec
Singulair
And when his allergies were really bad - allergy shots weekly/monthly for 6-7 years
Plus a second antihistamine Claritin in the same day
Ds was in the beyond severe category for allergies
For a very long time
Can you see an allergist ??
My allergologist (don't know if this term exists (by the way, do you have any trouble understanding me ? is my english fine ?) told me that Dymista and Singulair I believe were good medications but were not available in France.

Zyrtec, I've already taken this drug, but it became ineffective. Zantac too I believe. Claritin, I've heard of it. I've taken various eyedrops but I don't remember the name of the molecule.
06-05-2016, 05:29 PM   #27
usoagn
 
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I'm sorry you are dealing with all of this! While not getting diagnosed allows you to not know you have Crohn's ( "I still can not have Crohn's"), it also allows your condition to potentiallyworsen because you are undiagnosed and not getting appropriate therapy.

I wish I had some answers for you -- I only have a few thoughts.

Who diagnosed your increased angiogenesis and is there a name for it? Is it from birth? Have you seen and ENT doctor? An ENT could give you guidance about intubation and your blood vessel condition.

An MRE MR enterography seems like a good non-invasive way to get more information.

How low is your hemoglobin? That could be a cause of your increased heart rate.

Uveitis and reactive arthritis are listed as possible complications of yersinia and campylobacter.

Sending positive healing thoughts your way. Hope you find answers and relief of your symptoms soon.

Angiogenesis => Well I don't know if that was the exact term actually. After physical exercise I always felt like a powerful throbbing pulsatile sensation in my neck, I brought the subject up with my family physician and an angiography exam found out I had much more blood vessels in my neck than I should have.

MRE enterography => I'm doing an enteroscanner next month. Is it any better than enteroscanner for Crohn ?

Hemoglobin => 0,9 times lower limit of normal. Hematocrite => 0,9 times lower limit of normal too.


Uveitis and reactive arthritis are listed as possible complications of yersinia and campylobacter.

=> Didn't know. However I had these infections months ago, and the onset of these symptoms is quite recent.

Sending positive healing thoughts your way. Hope you find answers and relief of your symptoms soon. => Many thanks to you, I greatly appreciate your support and help.
06-05-2016, 05:31 PM   #28
usoagn
 
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There is research going on all the time so look forward to hope.
Concerning Crohn being an incurable disease ?
06-05-2016, 05:47 PM   #29
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If it is left untreated, the damage could get worse.

06-06-2016, 11:56 AM   #30
Scipio
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"Concerning Crohn being an incurable disease ?"

I doubt that Crohn's will be cured in our lifetimes - if by "cure" we mean that the disease is treated, the symptoms and other ill effects are abolished by the treatment, the treatment can then be stopped, and the patient then goes back to leading a normal life with little or no risk of return of the disease.

Unfortunately, this is not a simple condition like say an infectious disease where if you stamp out the germ the disease is gone. It's far more complex than that.

What has gotten enormously better with Crohn's over the past 20 years is the management of the disease - treatment to reduce or abolish the symptoms, reduce the damage to the gut, and significantly improve the quality of life for the patients.

The current research holds out the very real hope management of the disease will continue to improve over the next 20 years such that most patients can live a near-normal life. Not completely normal and not all patients - the disease is far too variable in presentation and severity for that to be a realistic hope. But I'm confident that things overall will continue to get better and better as the research goes forward.

Bottom line for the future: cure - No; better and better management - Yes.
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