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Crohn's Disease Forum » General IBD Discussion » Crohns and hunger pangs?


11-27-2014, 09:55 PM   #1
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Crohns and hunger pangs?

Hi all,

Glad to have found this forum. So helpful!

Recently diagnosed with Crohns (within past 6 weeks) but confused because my symptoms are atypical. I don't have diarrhea or constipation and I don't throw up. I do have an "unhappy gut" with all the sounds it makes and bad bloating. The most disturbing symptom however, is unrelenting hunger pains. This has been going on for 2 years and I have found little relief. I have gained weight because I eat much more now but still I'm hungry--it keeps me up at night. I'm miserable. I've restricted my diet and have been gluten free, dairy free, and sugar free. No relief from hunger.

I am currently taking Pentasa 500mg 3x a day (down from 1g 3x a day). Dose was lowered because I felt I was getting very high anxiety. So it's been about 3 weeks on Pentasa but nothing has changed. Hunger may even be more intense! I also have joint pain that I didn't even know may be related to disease and have osteoporeini diagnosed from bone density test a year ago. I have an overall feeling of malaise and fatigue.

I've been reading forums all day and cannot find "hunger" as a major symptom of Crohns. So I question what is going on with me really? Crohn's was diagnosed after A capsule endoscopy showed ulcers in my small intestine and endoscopy in Oct showed signs of inflammation in same area. I have myriad blood tests, stool samples, scopes and scans. In spring I was on buesenide for 3 weeks but stopped abruptly because I got no relief (I had no idea about need to taper). I have learned a lot from reading posts so really grateful if anyone has insight to share!!

Thank you in advance!
11-27-2014, 10:07 PM   #2
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Hi and welcome.

Sorry I can't be of any help. Hopefully someone will be along soon who can help.

Sending you my support.
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11-28-2014, 09:50 AM   #3
UnXmas
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Hi, I have the opposite problem, I feel so full and am desperately underweight, but this has meant I've thought a lot about hunger and fullness, so I had a few thoughts reading your post.

First, a couple questions which may seem t really obvious, but just to make certain:
Crohn's isn't known to cause hunger, so are you sure it's Crohn's causing the pains? And are you sure the pains signify hunger?

Sometimes heartburn causes pain which is relieved by eating, so I did wonder if your pains could be from that, but if you did have severe heartburn, the capsule endoscopy you had probably would have found inflammation in your stomach and easophagus.

After years of never feeling hunger, I recently had a couple of episodes of sudden severe drops of blood sugar while in hospital. The first made me feel tired, and I really didn't want to eat, but was desperately thirsy, and had an insane craving for milk. I drank glasses and glasses of it, along with the 500ml of lucozade that the nurses gave me to raise my sugar levels, and I don't even like lucozade! The next time it dropped though, I was hungry! I didn't even remember what hunger felt like before, but I knew then that I wanted to eat. Im not sure how blood sugar affects hunger in long-term situations, but again, it might be something to ask about.

If you've been researching Crohn's and hunger, you'll probably have come across people who struggle with feeling hungry due to taking prednisone. I never had this side effect from it myself, a lot of people here have, and will understand how you're feeling, even if their hunger's due to a different cause.
11-28-2014, 12:16 PM   #4
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Thank you for the thoughtful response Unxmas.

I have not believed the hunger was a symptom but my GI seems to think it is. But it doesn't budge no matter what I take. The endoscopies revealed inflammation and small ulcers in my small intestine. The reason I went to GIs in first place was because of hunger.

I've had my blood sugar tested in blood tests and its been fine?

I have not been on pred though I know it can cause hunger. What is frustrating for me is not having a clue why I have this symptom for 2 years?

Heartburn: I think that is a valid point. I think what I feel sometimes is like heartburn but heartburn meds have not relieved it?

I keep praying for relief. Thank you for responding!!
11-28-2014, 04:39 PM   #5
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I understand what you are talking about as I get this when I'm on pred which I'm currently on and most days my appetite cannot be satisfied which is really getting me down. I have also put on a lot of weight.

I also get like this when I am ill I don't know if it's my body's way of telling me to eat more but I do then I eat more than I should it I keep eating like that after the need has gone and I gain weight again. I used to be 129lbs and weight I was finally diagnosed 2002 I was roughly 147 and I'm now 207lbs.

I would love to know what causes the hunger too.
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11-28-2014, 06:08 PM   #6
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I have gained about 25 pounds in 2 years. I'm biggest I have ever been. I don't like eating this much food but not sure what else to do to avoid extreme discomfort? I eat pretty healthy, considering, but the volume of food is ridiculous.
11-28-2014, 06:20 PM   #7
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I find when I'm healthy enough and not taking steroids that following weight watchers helps me. I managed to get back down to 162lbs at one point then I fell pregnant and gained again then got back down to 170lbs then had my most recent flare in May I'm now 217lbs I've put the wrong number in my post above. I'm hoping once I get off these steroids I can seriously follow weight watchers again and get the weight off again but it's a constant battle.

Do you drink fizzy juice? I find if I only drink water I'm better but the diet fizzy juice seems to do something to my stomach.
11-29-2014, 09:16 AM   #8
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What does the pain actually feel like? Does eating food relieve it?

Just out of curiosity, was your GI surprised that you came to see him because of hunger? I just can't imagine many doctors would do a capsule endoscopy because of hunger. I realise it's a serious problem for you, but it doesn't seem like one many doctors would consider serious.
11-29-2014, 01:25 PM   #9
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The pain feels like hunger that then feels like pain. I had bloating and stomach discomfort as well but I have been seeking help because of what feels to me like unrelenting hunger. Eating does help relieve discomfort but in 2 years it takes more food to relieve it. And the sensation that I'm never really full. I originally thought it was a stomach ulcer.

Quite a few DRs pooh pooh'd me. But then the capsule Endoscopy found tiny ulcers in small intestines and 2nd endoscopy found that I had a hiatial hernia and inflammation. And the diagnosis of Crohns 6 weeks ago.

But it's not adding up for me--I am not presenting with the most basic Crohns symptoms and the symptom that most bothers me (the hunger) does not seem to be a symptom of the disease!

I feel miserable and am at a loss

Thank you for your support!
11-29-2014, 04:29 PM   #10
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I'm sorry you had doctors dismiss you. I've found most people don't understand how bad feeling full feels to me. People remember how they felt on occasions when they ate a bit too much, and find it difficult to grasp that my version of feeling full can be quite awful, and that feeling it day in, day out, and having to keep eating anyway, can be miserable!

Perhaps you can find one positive in this: it's led to you discovering you have Crohn's, which can sometimes do silent damage if left untreated, which you might now be able to avoid.

Has your doctor suggested a gastric emptying study? I had one just a few weeks ago, but I don't know the results yet. You eat a meal with some radioactive stuff mixed in, and they take x-rays over a few hours to see how fast it leaves your stomach.

I think there's a lot more to how we perceive hunger than just the fullness of our stomachs, but it may possibly help diagnose you, or at least rule out one aspect. I'm not sure if hunger as a symptom would count as a reason to do this test, and generally advise people to avoid requesting particular tests (I've found most doctors don't like patients to suggest what the doctor should be doing) but if you now have a doctor who's prepared to investigate this symptom, it may be worth asking about.
11-30-2014, 02:38 PM   #11
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Perhaps you can find one positive in this: it's led to you discovering you have Crohn's, which can sometimes do silent damage if left untreated, which you might now be able to avoid.

Has your doctor suggested a gastric emptying study? I had one just a few weeks ago, but I don't know the results yet. You eat a meal with some radioactive stuff mixed in, and they take x-rays over a few hours to see how fast it leaves your stomach.
Thank you for the positive spin. You're right! I would not have had much reason to question my gut if not for hunger, and would not discovered the issues I have.

I have heard of gastric emptying study but no Dr has mentioned it. I think it's a worthwhile consideration. Please keep me posted on what they find with you?

I know what you mean about people not understanding. They can relate to points in times when they felt too full or hungry but not the constant state of it. Even when I eat I don't feel "full" ..I just feel more relief. As for you, I can imagine how it takes away the enjoyment of eating because your stomach is always saying, enough! For me I eat to avoid pain. Enjoying food is becoming a foreign concept though I'm trying to work on overcoming that. Eating is such a part of socialization these issues are really tough to deal with.

Another positive spin: I have the weight gain but I'm lucky as I'm very tall and was very slim so I'm not overweight by most standards. It is now mostly a blow to my ego that I'm no longer slim

I'm going to see another Dr this week and really curious to what they make of it. I really hope we both find relief soon!!
12-01-2014, 07:51 AM   #12
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I was diagnosed last year and I'm on Imuran, and I get incredibly hungry! I eat, then two hours later I need to eat something again, even if it's just a few biscuits, to fill the void. This also helps me keep going as I often have massive energy slumps and as I suffer from fatigue anyway, almost constant eating helps. I've always been a nibbler rather than someone who eats massive meals (although I can put away a good size restaurant plate) so it's not too bad, just the nibbles are now closer together than they used to be.

My metabolism has changed since I've had crohn's too - I can eat more of what people perceive as 'crap food' and I haven't gained an ounce. My weight is steady at 10 stone (140 pounds) and has been for a good few months now. I happily eat stuff like pizza, pasta, burgers etc and my weight stays constant. So I think my internal engine has been revved up by having crohn's. It's the only explanation.

If it becomes a real problem then I'd suggest more tests, but yes, I get very hungry too! And being on Prednisone was a nightmare, that was constant eating. Thank gods for all night takeout is all I'm saying...
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12-02-2014, 06:22 AM   #13
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hi dear, as u say u ve been only diagnosed recently and what comes to my mind is the fact that u have changed your diet very strictly, gluten free, wheat free, diary free . maybe its too much for your body to take and u should try experimenting by cutting out just one at a time to see if u are actually better without it? u might feel constant hunger because your body simply doesnt consider these foods enough because it was used to a different type of diet. also u say that u dont suffer with diarrhea so when u experiment with food u dont need to worry about the nearest toilet. it sounds like the crohns is affecting mainly your stomach perhaps? i am taking pentasa as well and sometimes it gives me stomach pains for no reason. but back to your hunger. well to be honest i have one more thing to say. i am not sure if anyone has been trough an eating disorder on top of their IBD but when u r in recovery u feel constant hunger too for the first couple of months. and u restricting your diet might have the same effect. constant hunger. i hope that u feel better soon. x
12-02-2014, 07:34 AM   #14
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I think sanbrall makes a good point: I've heard that restricting food can lead to cravings. I've found this myself actually; although I don't feel hunger, since I've had an ileostomy, I've had to really limit how much fibre I eat, as my stoma blocks really easily. That rules out a lot of fruit and veg, plus I can't fill up on those anyway as I need the calories. I find myself craving raw apples and pears, and tomatoes and cucumber. I allow myself a tiny bit of one of them once a week or so. So it's possible that trying dairy free, wheat free, etc. may have accentuated the problem.

Also, you said it takes more food to relieve the pain now than it used to - I've heard that the stomach can be stretched from regularly eating large amounts. Though I think it might be able to shrink again, or at least doctors are always telling me that I feel full so easily because my stomach has shrunk from only eating small amounts, and that if I eat more it will stretch again. Though that's never been true for me - for one thing the meals I eat are not that small, I need an excessive amount of calories, so doctors see how underweight I am and assume I eat a lot less than I actually do, but I've tried eating more and it never gets easier. But my digestive system is so abnormal, these rules about stomach size may apply to you even if they don't apply to me. Have you ever tried gradually reducing the amount you eat?

And, this is very much a long shot, but have you tried treating the pain with painkillers? There are quite a few types of painkiller. Although it's not its primary use, I know Amitriptyline can help with some forms of stomach pain, for example. (I've tried an awful lot of painkillers, for various reasons, so if you'd like any more suggestions, let me know.)
12-02-2014, 11:23 AM   #15
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hi dear, as u say u ve been only diagnosed recently and what comes to my mind is the fact that u have changed your diet very strictly, gluten free, wheat free, diary free . maybe its too much for your body to take and u should try experimenting by cutting out just one at a time to see if u are actually better without it? u might feel constant hunger because your body simply doesnt consider these foods enough because it was used to a different type of diet.
Thank you Sanbrall. I appreciate your suggestions. To clarify a couple of things, I have been only diagnosed with Crohn's for a month but I've been struggling with these symptoms for almost 2 years. The food elimination happened over the course of the 2 years to try to get relief from hunger. Some thought it could have been a food allergy? My GI Dr believes in his patients following FOdmap diets..I don't follow it very strictly anymore because honestly while it helped some of bloating, it did nothing for hunger pains. I'm spending time with my Mother who lives abroad and I've started eating bread again. I'm still observing how I'm reacting.

Unxmas, I do agree that my stomach has stretched so now it wants larger volumes of food. I am trying to eat smaller portions per meal--challenging but I'm trying. I eat 4 very heavy protein based meals a day--if I don't include animal protein in my meal for some reason it's like the food just does not register. I never ate this much protein before? It's bizarre!
Funny you should mention pain killers--I don't tend to take them unless things are really bad? But new Dr I am seeing while I'm away rec Amitriptiline to help me sleep (having lots of trouble with this!). I had no idea it was for pain too? I have been taking it for 10 days. I can't say I noticed a reduction in pain but it def makes me very groggy in mornings and most nights I sleep more than I used to. So that is a blessing!!

I thank you both for your great suggestions!! I hope to see a new GI Dr while I'm away to get her opinions, and it occurred to me as I typed to address this whole animal protein deal--why does that help and why do I need so much of it?

I'm really glad I found this forum!! It is comforting to know I'm not alone!!
12-03-2014, 05:02 AM   #16
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Amitriptyline is primarily an anti-depressant, but it has a vast number of uses and side effects. I've been taking massive doses for years now, and it still ensures I get very good sleep! One of its other uses is for stomach pain, though this might need a higher dose than those usually recommended for help with sleep. This forum has a support group for it: http://www.crohnsforum.com/showthread.php?t=47926:
12-03-2014, 10:46 AM   #17
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Hi truthseeker,

My first trip to a GI was also for hunger pains. I had a gastroscopy, but it showed nothing. I was very dissapointed, because I hoped to get an answer. The GI said I had functional dyspepsia (something like IBS, but in your stomach instead of your colon).

Almost a year later I had to stop with the medicine Imigran, which I used for migraines. There was a huge relieve in the hunger pains and I lost a lot of weight! But in the years after that, the hunger pains slowly came back and I gained all of the weight again.

I've found that medications like Omeprazole do help a bit. I can postpone eating for about two hours now.

I still don't have an answer for why I have these terrible hunger pains. I feel like it's not a craving, but it definitely has something to do with my stomach (or the duodenum). I know this, because I don't even want to eat, I just have to!
12-03-2014, 06:06 PM   #18
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Hi truthseeker,

I still don't have an answer for why I have these terrible hunger pains. I feel like it's not a craving, but it definitely has something to do with my stomach (or the duodenum). I know this, because I don't even want to eat, I just have to!
Wow Dutchgirl! I agree it's not a craving. I don't feel like eating either but have to. I just went to a homeopathic Dr today and he says my digestive system is compromised and my energy level is depleted. The hunger he says might be my body's way of saying I need to feed it more vital foods (super foods). I try not to eat junk and to eat healthy. But clearly I need more.

He gave me a tincture and says I need to walk outside and get grounded. I feel so tired but I know I have to make an extra effort to get the energy from my environment as he is suggesting.

Will keep you all posted!!!
12-04-2014, 08:05 AM   #19
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Wow Dutchgirl! I agree it's not a craving. I don't feel like eating either but have to. I just went to a homeopathic Dr today and he says my digestive system is compromised and my energy level is depleted. The hunger he says might be my body's way of saying I need to feed it more vital foods (super foods). I try not to eat junk and to eat healthy. But clearly I need more.

He gave me a tincture and says I need to walk outside and get grounded. I feel so tired but I know I have to make an extra effort to get the energy from my environment as he is suggesting.

Will keep you all posted!!!
After the GI said I had functional dyspepsia I also went to a homeopathic doctor. He told me to follow a gluten free diet. I tried it for three months, but nothing changed.

He also gave me a tincture, but it didn't help either.
12-04-2014, 01:38 PM   #20
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I just went to a homeopathic Dr today and he says my digestive system is compromised and my energy level is depleted. The hunger he says might be my body's way of saying I need to feed it more vital foods (super foods). I try not to eat junk and to eat healthy. But clearly I need more.

He gave me a tincture and says I need to walk outside and get grounded. I feel so tired but I know I have to make an extra effort to get the energy from my environment as he is suggesting.

Will keep you all posted!!!
I really wouldn't get your hopes up about this.
12-05-2014, 07:10 PM   #21
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Thanks for the cautionary warning ladies. I always get my hopes up...I so want to feel better!!
12-06-2014, 03:17 PM   #22
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This sounds so similar to my experience, although I don't actually have a diagnosis yet. My pains started out feeling very much like hunger, even after eating, to the point where my doctor was very surprised not to find ulcers in my stomach. It still feels like a gnawing, hunger pain type pain when my pain is less severe, although lately it's been worse. I'll let you know if it turns out that I have Crohns (probably won't find out until January or so, as my capsule study is on the 23rd of this month), and if I do, you won't be alone in having this type of pain!
12-07-2014, 11:05 AM   #23
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This sounds so similar to my experience, although I don't actually have a diagnosis yet. My pains started out feeling very much like hunger, even after eating, to the point where my doctor was very surprised not to find ulcers in my stomach. It still feels like a gnawing, hunger pain type pain when my pain is less severe, although lately it's been worse. I'll let you know if it turns out that I have Crohns (probably won't find out until January or so, as my capsule study is on the 23rd of this month), and if I do, you won't be alone in having this type of pain!
Thank you for the encouragement! All the best with your capsule endoscopy. I'm getting another opinion (yet again!). I attended a Crohn's and UC forum in the Caribbean for awareness week and it was very enlightening. Doctors were on hand to answer questions and patients shared their stories. The suffering with this disease is incredible but also the hope! One young lady suffering for 10 years from UC looks like she is on the other side. Her journey was really tough but there she was, looking great, you'd never know what she had been through. Anyway, I got some 1 on 1 with the GI present and he agreed my symptoms are not typical of IBD. I showed him my Dr's reports and everything and he encouraged me to make an appt. and have someone else look at my situation with fresh eyes while I'm in T&T. I'm doing it because from all the comments on this thread and others, my symptoms don't make sense in context of this disease. He also said he didn't think Pentasa was the right drug even if I did have Crohn's as my ulcers are in my small bowel and the Pentasa apparently isn't as effective on small bowels. I've been taking it for a month and I do not feel any relief. I saw 2 GI's in the US. I had communication problems with both.

I learned so much and I encourage all of us to keep asking questions. I realize how I have not been informed at all. I'm only just beginning to understand the nature of this disease. Now that I'm more informed I can ask better questions.

I will keep you guys posted!!

Thank you for all the suggestions and encouragement.
12-12-2014, 10:50 AM   #24
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I've been wondering. Do any of you have difficulty sleeping? I've had trouble sleeping for years and it has gotten worse with this hunger problem. I've sensed that they are linked and I've read that lack of sleep and hunger are related. But when I've asked Drs they agree that I need to be sleeping more (it is a constant work in progress!) but don't take seriously my hunch that the hunger is directly related to sleep deprivation. So just wondered if any of you had that problem too?
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