Crohn's Disease Forum » Your Story » I fear the Crohn diagnosis as hell...


 
06-06-2016, 12:12 PM   #31
smt
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"Concerning Crohn being an incurable disease ?"

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. 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.
Very very well said. Despite all possible breakthroughs, it is a fact that it would not be curable. And you say it best when you say: "Not completely normal and not all patients - the disease is far too variable in presentation and severity for that to be a realistic hope."

Another issue is access to drugs. Those of us in the developing world have an issue over this. And there is no benefit to us in the developing world if we cannot work: I would consider any treatment a failure if it does not give us that ability.

I see here on the forum some people in the developed world who are probably reasonably well, but do not work for fear that the disease would come back. That is not possible in the developing world. One would die of starvation and shame.
06-06-2016, 12:30 PM   #32
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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.

You have documented your symptoms well. In my honest view, Crohn's Disease is likely.

I can only say that there are people on this forum who are working with this disease, and access to drugs is what you require. But please see Scipio's reply; he has written it very very well. Please be aware that there is no "cure" in sight.

If you are a student, please do not give up. Fight any entity that mocks you or tries to take away your rights. I am a research scholar and was one of the batch toppers in the coursework. I give it back to anyone who attacks me for this disease.

I have undergone colonoscopy (nothing was found) - I suggest you have it. As a human being we undergo pain, and in accepting that we show that we are courageous. It is not very painful in any case.
08-07-2016, 05:17 AM   #33
usoagn
 
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Some update, really bad news.

So one day I wake up and I made up to 1 liter of blood and mucus in the toilet. It happened twice in a week, so we urged the ER, and on rectosigmoidoscopy it looked like UC (severe UC they told me). However entero scan showed ileal involvement in multiple sections and it looked like Crohn's. CRP at 28.

Can I have both Crohn and UC's at the same time ?

I'm lost and I'm in denial. Please help.
08-07-2016, 05:57 AM   #34
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Some update, really bad news.

So one day I wake up and I made up to 1 liter of blood and mucus in the toilet. It happened twice in a week, so we urged the ER, and on rectosigmoidoscopy it looked like UC (severe UC they told me). However entero scan showed ileal involvement in multiple sections and it looked like Crohn's. CRP at 28.

Can I have both Crohn and UC's at the same time ?

I'm lost and I'm in denial. Please help.
From my understanding, you can.only have one and not both. You can have Crohns Colitis which means the Crohns is in your colon.

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08-07-2016, 07:31 AM   #35
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But what do I have ? Crohn's or UC ?

Can Crohn's looks like UC in colon ? Do Crohn's cause blood and mucus ? I had a lot of blood and a lot of mucus.
Believed Crohn's causer porridge-like stools, not large amounts of blood and mucus.

In my rectum and sigmoid its now only mucosal, Crohn is deeper usually I had read.

Though, scan shows ileal involvement.
08-07-2016, 09:27 AM   #36
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But what do I have ? Crohn's or UC ?

Can Crohn's looks like UC in colon ? Do Crohn's cause blood and mucus ? I had a lot of blood and a lot of mucus.
Believed Crohn's causer porridge-like stools, not large amounts of blood and mucus.

In my rectum and sigmoid its now only mucosal, Crohn is deeper usually I had read.

Though, scan shows ileal involvement.
I have Crohns. At times , I have had large amounts of blood in the toilet. I don't know which you have. Have you been to a doctor?

08-07-2016, 09:37 AM   #37
usoagn
 
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Well if I had medical tests, it's probably because I have been to a doctor. I have future appointments scheduled. The rectosigmoidoscopy favors UC. The scan Crohn's.
08-07-2016, 09:42 AM   #38
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Well if I had medical tests, it's probably because I have been to a doctor. I have future appointments scheduled. The rectosigmoidoscopy favors UC. The scan Crohn's.
I am sorry. I wasn't looking at where you said you had been to the ER and been tested.

08-07-2016, 09:53 AM   #39
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I wasn't completely awake yet.

08-07-2016, 11:23 AM   #40
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Since UC is only located in the large bowel and you have terminal ileum involvement then it's fairly good bet you have CD. Crohn's affecting the colon is called crohns colitis. It's not completely unheard of to have both but generally when they aren't certain they list it as indeterminate.

CD can cause blood and mucus in your stool. Anything that causes inflammation of the bowels has the potential to cause bleeding or mucus because the lining is being disturbed.

For the most part, treatment is fairly similar. 5ASAs are more effective with UC, but are often used as adjunctive therapy in CD. The main difference in treatment would be that you can treat UC by removing the entirety of the colon where as since CD can affect anywhere from mouth to anus surgery will not stop CD from returning. Beyond that they both use steroids to quickly control inflammation then maintenance meds of immune modulators such as 6mp, imuran and methotrexate and biologics such as remicade and humira. Oh and some studies show those with small bowel CD have success with Exclusive Enteral Nutrition (EEN) as first line of treatment whereas success isn't as prominent with UC or Crohn's colitis(but some have still seen success with EEN and large bowel involvement).
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08-08-2016, 11:34 AM   #41
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usoagn,

I just read this entire thread. The respondents to your questions are giving you good advice. Getting the diagnosis is worth it, even if the disease does not have a cure. I am not a doctor, but I have years of experience as a Crohn's patient. It sounds to me that you have Crohn's disease. Terminal ileum involvement means your disease is outside the colon, in the end of the small intestine. This is the place that Crohn's most commonly resides.

I was diagnosed in 2010, this was after 6 years of being misdiagnosed with IBS, and about 20 years of various other symptoms, including bloody stools and the "D". When I had my first colonoscopy, the G.I. could not get the scope into the terminal ileum. But in his mind this did not mean anything! Because he found nothing in the colon he diagnosed me with IBS. My symptoms, and pain and suffering (including a period with 6 ER visits in 3 months) went on.

In June 2010 I had a severe attack again and went to the ER. The ER did a CT Scan of my abdomen. The doctor there was the first to talk to me about it being Crohn's disease. I went to a new G.I. and, after going through a very extensive battery of tests he confirmed Crohn's disease. The existence of a large Crohn's mass was confirmed and I was scheduled with a bowel resection (surgery). After surgery, I was also placed on sulfasalzine (my insurance would not approve Humira at this point because I had not been on less aggressive meds). I failed on sulfasalzine and Asacol then the insurance agreed to pay for Humira.

In my case the surgery, and the Humira, were godsends. I have been in remission for 5 years. My life is back to an acceptable normal. I work 40 hours/week. I am active in my off time. This summer I have done a lot of fishing and outdoor activity. I have been truly blessed. I do limit some the things I eat because roughage can cause boughts of "D". Other than that, I am, with meds, living a normal life. Treatment, once the correct combination of meds has been found, is worth it.
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08-08-2016, 07:57 PM   #42
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DougUte your story gives me a lot of hope if, in fact, I end up diagnosed with Crohn's. I go in for my upper and lower scopes on Thursday, I definitely have been suffering from anxiety lately. I have never been put under, I am getting propofol sedation and have been on an opiod med for 6 years. This causes me to worry. My mind races when it shouldn't. I worry about stupid things, but reading here gives me perspective. I will be OK through the procedure as many people in more compromised situations have toughed it out before me.
08-10-2016, 11:09 AM   #43
dejavucandace
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I once had a colonoscopy where I couldn't wake up for 2 days also. But this last time was good. Not sure if this is what you fear or the actual colonoscopy. Frankly its a breeze its that darn prep that gets me every time. I am literally trying to swallow it down while leaning over the sink fearing vomiting. At times it even spikes me a fever.
08-14-2016, 10:35 AM   #44
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The prep honestly wasn't so bad for me surprisingly. Although the day of I felt really weak and after waking up I was so weak I had to get pushed in a wheelchair back to my wife's car.

The procedure ended up being a breeze and I no longer fear general anesthesia I think lol.
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