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Crohn's Disease Forum » Your Story » Does anyone else never feel hungry?


06-30-2012, 11:08 PM   #1
Marcus21
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Does anyone else never feel hungry?

Hi,

I'm new here, but not new to the pain. I have been having sharp pain in my stomach for 3 years now.

It first started my last year of college. When I felt the pain, I went to the hospital. I had an amazing urgent care doctor look at me, and from only my symptoms he said I had a problem with my colon. After I had a CT scan, and it reviled that I was having appendicitis. I was in surgery shortly after that. A few weeks after surgery, the sharp pain had come back in the same way as before. My surgeon put me in the hospital again and re ran all the tests. He could not find anything, and I was send out of the hospital with an antacid and still having the sharp pain. I decided to go back to the urgent care again and happened to see the same doctor who saw me before. He still thought it was my colon, ran some more tests. When they came back negative again, he explained how it could be spams of the colon. He gave me some IBS medicine to try, and told me to follow up in a few weeks. Well, the medicine did not work and actually made things worse. He noticed that I kept losing weight fast and that my clothes were getting so loose. He urged me to find a specialist and get colonoscopy.

I found a specialist near college, and he was amazing. We went though a lot of tests. I was almost about to give up when we did a capsule endoscopy. It showed what looked to be erosion in my intestines in the duodenum and ileum. He said he suspected it might be Crohn's Disease. After that test I was put on Pentasa. I instantly noticed a difference in the way I felt, but it did not last more than 2 months. I told the GI doctor how much cipro helped me and I was given that too. While on that combination, I felt great!

Now, the problem is that my GI doctor decided to move unexpectedly. Now that I live near Indianapolis, I have a GI doctor here. He took a look at my record and does not think I have Crohn's. So, now I am re doing all the same tests. He does not want me on the Pentasa and Cipro, and I am back to having pain again. Also, now my liver test has elevated for the past 6 months now. We ran a specific blood test for Crohn's, mine came back positive for one of the markers.

In the mean time, I also found a Primary care doctor close to me. He is more open minded and thinks I may have Crohn's. He even gave me a prescription for prednisone to see how I would react. Let me tell you, It helped and most of the pain in my lower right stomach went away. But I still have pain in my upper right stomach. I went to my PC doctor and he thinks it is coming from my duodenum.

The next test he is looking into is an ERCP for sprinter of the odi dysfunction.

All I know is I have a sharp pain that seems to get really, really strong at times. I think I have Crohn's Disease, but I have not been able to prove it yet. I feel tired all the time and the pain is making me not want to go out and do things. The pain seems to keep me from getting hungry, and this has lasted 3 years.

So my question is, does anyone else never feel hungry?
06-30-2012, 11:17 PM   #2
Aubree
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Because of the symptoms of my Chron's I have stopped eating when I want to go out or if I have work. I sometimes don't eat until 8 or 9 at night and even though this frustrates the dotors and my parents, I feel it's necessary so that I won't get diarrhea and have to go home. Long story short even if I don't eat until 8 I only feel a little hungry, which is pretty weird because I eat pretty small portions. So yes I am experiencing a lack of hunger as well.
07-01-2012, 12:57 AM   #3
Jennifer
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Hi and welcome to the forum!

When there's a fear of pain, diarrhea or any discomfort caused by food/drinks, its very common to start avoiding them and your body does start to get used to it. I noticed that the less I eat and the less often, the less I get hungry and the less I'll eat when I finally do. I'm not currently in a flare but stress in my life from other things have made me put food as more of an afterthought or a way to stay functional but I hardly enjoy it anymore. My parents have also noticed that I eat less than I used to and try to get me to eat more. Its hard to get back into the habit of eating normally and harder still if you have a fear of what the food will do to you.

Good luck with your tests, I really hope you get a diagnosis soon so you can start living again. Check out the Undiagnosed Club sub forum if you haven't already: http://www.crohnsforum.com/forumdisplay.php?f=75
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07-01-2012, 03:35 AM   #4
Aura
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I haven't been hungry for a long time. I eat cause I have to for my diabetes - I am not hungry at all - my crohn's is in my jejunum and distal ileum. I'm on Humira and Aza and prednisone to get it in remission. I am just tapering off the pred now. Good luck with getting the diagnosis and the right meds. I wasn't sure that pentasa was that effective in the small bowel? But I am not sure.
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07-01-2012, 12:25 PM   #5
David
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Hi there and welcome!

Getting a FIRM diagnosis of Crohn's Disease (or whatever it is) can be very difficult at times. I'm sorry you're having to go through all of those hoops

You mentioned that you're tired all the time. One common deficiency in people with Crohn's Disease is vitamin B12. Have they tested for it? Lack of it can lead to fatigue and if you were deficient, that would be an additional clue in the puzzle.

We're here for you!
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07-01-2012, 03:59 PM   #6
Marcus21
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Thanks for all the support.

I'm just like Aubree. I can put off eating until later in the evening and only feel slightly hungry.

David, I had a blood test a few months ago, and I noticed that they did check some of my vitamins. It looked like my B12 was 629 ( the range was 180-914) so normal and not low. I have been taking ginger tea and it seems to help with feeling tired. It is supposed to be good for digestion.

Another thing that makes this strange is I remember have blood in my stool when I was around 14 or 15 and just going into high school. I just ignored it ( which I really regret now) and it went away. I look online and that seems to be the age Crohn's can start. My last capsule study showed some dried blood in my intestine, but not where it came from.

The best natural things that I have found to work for me are Ginger Tea and Cranberry juice.
07-01-2012, 04:10 PM   #7
David
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Good deal! We also have a wiki entry on fatigue that might give you some ideas to discuss with your doctor as well.
07-01-2012, 04:19 PM   #8
Marcus21
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Thanks for the link David...I just glanced at it but I noticed something on Vitamin D. My blood test showed I was low on Vitamin D. I thought it was because it was winter and we have a lack of sunshine at that time. I did not know it could be related to Crohn's. I'll look at that link more closely. I'm glad I joined this site, seems like there are a lot of great resources to educate myself.
07-01-2012, 06:36 PM   #9
tracycat79
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Hey, Marcus21,
Just wanted to let you know that I am kind of in your same situation. Long story short, I was diagnosed with crohns in 2005. I had many of the typical symptoms. A colonoscopy is part of how my diagnosis was made. I was put on prednisone. When it didn't help, I was put on remicade for like 8 months. Stayed in remission for several years. Still had some stomach problems though. I have been having increasing symptoms these past few months. I saw a new gi doc and she looked at my previous records and said she didn't see anything that showed a definitive diagnosis of crohns. But did show things consistent with ibd. Talk about confusing! I am having another colonoscopy this month. In the meantime I just have to wait and deal with the symptoms. Its frustrating I know. Do you keep obsessing about what might be causing you to feel bad? Sometimes I think, if there is no final diagnosis, then will the doctors say, sorry, just deal with it? I hope you can get some answers soon. Just wanted to let you know you're not alone with this.
07-01-2012, 07:17 PM   #10
Marcus21
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I'm glad to hear I'm not a lone Tracycat. I kinda knew the treatment by the first doctor was more situation than what the tests showed for Crohn's. Meaning I came into the office losing weight, the pain continued for 5 months straight, and I kept losing weight. I knew he was focusing on my appendicitis because I guess Crohn's can either be confused with it or it can be the start of it, I'm really not sure but that is what I got from him. I just did not know that once you are on a treatment, that another doctor can disagree and decide not to continue the treatment.

So, now the new GI is not in that situation and is strictly looking at tests. Since the tests do not definitively show crohn's, he does not want to treat it. I would be more worried, but I found an amazing primary doctor. He uses the tests as more of a guide, and focuses on symptoms and where the pain is. He always has new ideas to try and wants to find out what is causing it. Without him, I would be more concerned because I can tell the GI doctor wants to transition the conversation to there may not be anything wrong. I hate it when doctors do all these tests and say "well, we know from the tests you do not have cancer."

You are right Tracycat, I keep wondering what it is and why if I have so much pain it can't be found. I guess my last resort if the doctors say "deal with it" would be to beg for a double balloon endoscopy to see deep into my intestines to finally find out what the problem is. That, or beg for a lifetime supply of Cipro to get rid of the upper right pain. I'm kinda lucky because I know what will stop the pain, I just don't know what the disease is. My first GI doctor said Cipro won't cure Crohn's, but in some people it relieves symptoms. For me it works wonders.
07-01-2012, 07:30 PM   #11
David
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Marcus, have they tested you for small intestine bacterial overgrowth? That cipro works like it does for you makes me wonder about the possibility.
07-01-2012, 07:38 PM   #12
Marcus21
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I had a stool test for c-diff and it came back negative right after my surgery. Do they test for bacteria overgrowth with a stool test or another one?
07-01-2012, 07:40 PM   #13
David
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A breath test or they take a sample when doing an endoscopy. So no, wrong end
07-01-2012, 07:52 PM   #14
Marcus21
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I had an endoscopy and they tested for celiac disease and inflammation from Crohns. I mentioned how my primary doctor treated me for H. Pylori bacteria(because of the blood on the last capsule test), so they tested for that too. Unfortunately, they did not find anything. They did mentioned gastritis in my stomach on the report. I told my primary doctor I was taking ginger tea, and he said it would help with the gastritis. Also, they found food left in my stomach. So, they tested to see if my stomach was emptying food fast enough, and it was.

So, I've got this slow digestion going on, elevated liver test, erosion on a capsule endoscopy, appendicitis a few years ago and weight loss, this continued pain, and one marker positive for Crohn's on a blood test. Crazy, isn't it.
07-02-2012, 11:11 AM   #15
Gculk
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I haven't been properly hungry, except during one or two of my good weeks, in about four months.

I know when meal time rolls around that I've gotta eat, and I enjoy the taste, but I couldn't care less about filling my gut. Not from stomach sickness or anything, I just genuinely don't have much hunger for whatever reason.

Nathan
07-12-2012, 10:19 PM   #16
Marcus21
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Today I feel more pain. This time it is in the lower right and it is making my scar hurt. It hurt so much this morning it was hard to sit down. So, I decided to come here and look around some more. Then, I had a question for everyone: Has anyone's Crohn's disease started with them having appendicitis first?
07-12-2012, 10:25 PM   #17
Gculk
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The appendix is a part of the colon nearby to the terminal ileum, where most people get their Crohn's. So yes, people tend to get (correctly or not) diagnosed with appendicitis before having Crohn's found. Also, since appendicitis is caused by occlusion of the appendix and Crohn's causes swelling, it is not, as far as I am concerned, a great stretch of the imagination to say that swelling from Crohn's could lead to appendicitis.

Of course this is speculation by me, but I don't think it's too unreasonable.

Does anything do anything for your pain?

Nathan
07-12-2012, 11:16 PM   #18
Marcus21
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My first GI put me on Pentasa and gave me a prescription for Cipro for 9 weeks. It worked well for me for 2 years

I just want one of the tests to really show Crohn's so I can finally get a diagnosis
07-12-2012, 11:29 PM   #19
Gculk
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Heh, that's rich, getting a solid diagnosis of Crohn's. :P

The only way you're getting that is for them to keep on biopsing the inflammation until you get lucky enough to find granulomas. Might be first try, might be millionth. Are you going in for another scope?
07-14-2012, 11:18 AM   #20
Marcus21
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My GI doctor now is sending me to his colleague for a consult so I can have an ERCP done. So I'm not having any scopes soon, but I'm sure if they see inflammation they will do a biopsy. Since I have not been on any medicine for Chrons, the pain has come back and my liver test has been elevated and stays elevated. My primary doctor said that could be an external manifestation of Crohns(fatty liver). I also had some mouth sores, and took a picture of it and sent it to my doctor.
08-16-2012, 11:34 PM   #21
Marcus21
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I saw another GI about the ERCP test. He explained the risks to me and was not sure if the test was going to help me out. So, we are not doing it. I am going to see my GI doctor to discuss the next move.

My insurance with my company right now is great (100% coverage). It is changing next year because of the rise in health care costs. I was thinking of asking my GI doctor about an double balloon endoscopy. Do you think he would do it?

If so, if it is done by the end of the year it will be covered 100%. I was thinking my problem may be deep in my small intestine and this test could find something. What do you think?
08-17-2012, 12:28 AM   #22
David
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It doesn't hurt to ask them and see what they think It'd be nice to be able to get biopsies of where that erosion is.
08-17-2012, 11:38 AM   #23
agirl65
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Hi there. I'm new here as well, and I'm so sorry you are going through all of this! I too find that I just do not get hungry anymore, I've lost 11 lbs in a little over a month. I hope you get answers soon, it's all very frustrating...
08-19-2012, 08:48 PM   #24
Marcus21
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I got a sore in my mouth today. It is bigger than normal. I included a pic if anyone wants to see. I've been getting these more and more lately.

Edit: my picture did not upload. I think it is too big. I could try to re-size it and try again, but I did not know if that was too personal to post or if I could post it.
08-20-2012, 11:41 AM   #25
David
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You're welcome to post it. If you need help resizing it, let me know.
08-20-2012, 12:49 PM   #26
Marcus21
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I think I got it. Im concerned about the small side one.
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