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Crohn's Disease Forum » General IBD Discussion » Anybody else suffer with no appetite


09-12-2013, 10:13 PM   #1
Tikell
 
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Anybody else suffer with no appetite

Hi all,
I have had Inflammatory Bowel Disease for 20 years along with Ankylosing Spondylitis. I just had an MRI done and it revealed "focal bowel enteritis-crohns". I guess there is a segment of the small bowel in the right midabdomen and right abdominal pelvic junction that is thickened. I have been on humira and enbrel on and off for about 14 years. I have also been on Helminthic Therapy for about 6 months. The humira seems to keep the loose stools and diarrhea in check, it also helps with tongue sores and skin issues BUT, the worst symptom that I suffer with is NOT having an appetite. I usually have the urge to eat for about 3-4 days after my humira injection but then the rest of the time is miserable until the next injection. I am so depressed over this and am so tired of force feeding myself. I usually end up having fruit smoothies or green drinks because I can drink better than eat. Social situations are so awkward because I usually don't have an appetite. It is a horrible way to live and I just don't know what to do anymore. Doctors don't seem to come up with answers. I usually have to ask to be put on something but they don't seem to want to recommend anything. Does anyone out there have any suggestions. I would be so grateful as I just can't continue living this way. I know I can't eat because of all the inflammation and the humira is not keeping it at bay. Thank you so much.
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09-12-2013, 10:17 PM   #2
nogutsnoglory
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I'm so sorry you are suffering but its important to eat to feel better. I know you feel lousy when you eat but the malnourishment that can result will just make things worse. Have you tried ensure or a nutritional shake? Maybe those will be easier for you to down while getting some protein, calories and vitamins.

Is the helminthic therapy as part of a clinical trial or are you buying these from someone? If not a controlled trial that can be very dangerous and may be causing issues.
09-12-2013, 10:47 PM   #3
Tikell
 
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Hi there,
I usually just don't have a desire to eat. My tummy rarely rumbles except after my humira injection for a few days. It is awful. When I do have an appetite I eat to make up for lost time.....because I know the appetite rarely lasts. I have been working with a very good provider on the Helminthic Therapy. It is not a trial but they are working closely with me. I see that you take High Dose Vitamin D. Would you mind sharing how much and does that work? Also......is Cimzia an anti-tnf? I've heard that Wellbutrin which is an anti-depressant, has some anti-TNF properties. May ask my gastro doc about that.
09-12-2013, 11:09 PM   #4
nogutsnoglory
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The ensure drinks are easier when force feeding so just try your best even if you don't want to. I'm very concerned about your getting helminths from someone and not as part of a clinical trial. The medical community still doesn't know if they are effective or safe. I would highly urge you to tell your GI about the helminthic therapy and to do a stool test on you. All of your problems may be due to hatched worms or other parasite in your body.

I am taking 50,000 IU of Vitamin D2 for a few weeks before starting Osteoperosis medication. Cimzia is an anti-TNF biologic like Remicade or Humira and although all similar some work well for people while others don't. Wellbutrin studies are very limited, as an adjunct sure but it wouldn't be acceptable as a sole treatment for IBD.
09-12-2013, 11:42 PM   #5
Tikell
 
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hey there,
Actually, there have been no changes for the worse in the way I feel since starting the Helminthic Therapy. There have actually been times when I was feeling better. I am working with AIT (Autoimmunetherapies.com) I know this is unconventional and still in the exploratory stages but I was feeling so desperate before I started. Didn't think I could live anymore so I had to do something. Sick of all the meds which definitely have not helped me improve and then there are the horrible side effects. I am going to give it a while longer and see if I notice any improvement. If no positive changes in a year then I will quit the therapy. I can't tolerate the Ensure because it is so sweet so I usually stick to making my own smoothies with homemade yogurt or kefir. Just want an appetite......don't even care about the loose stools and diarrhea as long as I could eat consistently. I am currently taking Vitamin D3 at 10,000 ius plus vitamin K to help put the calcium in the right place. Thank you so much for your responses.
09-13-2013, 11:41 AM   #6
ce1210
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have you tried medical marijuana...it is absolutely the only thing that sparks my appetite. I was having lots of trouble gaining weight back after loosing almost 60 lbs from my first flare, and MM has allowed me to be able to go from having to or 3 liquid meals a day to 4 solid meals a day
09-14-2013, 01:38 AM   #7
Tikell
 
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Hi,
Yes, I have tried medical marijuana and sometimes it helped and sometimes it didn't. There was no consistency. Plus, I just hated being in a fog. I just don't know what to do. I feel like I am the only Crohn's person in the world who doesn't really have much of an appetite. I wish there was someone else out there who has had the same experience.
09-14-2013, 07:59 AM   #8
UnXmas
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Hi, I have no appetite ever. I literally don't remember what hunger feels like. I just have varying degrees of discomfort and fullness. On good days, it feels like I could eat but I have no particular desire to besides taste and the comfort that comes from eating nice food, but even on these days, just a small portion of food leaves me feeling very full, so I don't want to eat anymore. On bad days I feel sick at the thought of eating, like I really really don't want to eat. This isn't from stomach fullness so much as the horrible feeling in my gut that feels like I need to go to the loo - I have diarrhoea but even when I can't go yet, the feeling is so unpleasant that eating is the last thing I'd want to do. Most healthy people wouldn't dream of sitting down to a meal when they feel like they're about to have diarrhoea, but I have to do so all the time!

What is your weight like? Are you very underweight? I agree with nogutsnoglory's suggestion of supplements. I can't stand Fortijuice, but I like the milkshake style Fortisips and the yoghurt style Fortisips. I used to have Enrich plus (which is kind of like milkshake but not too thick) and I liked that too. There is a huge range of supplements out there, if you experiment a bit you should be able to find a kind you like. If you don't like the sweetness, I believe the Complan range includes soups.

You've probably heard this already, but eating several small snacks and high-calorie drinks each day is often better than trying to eat three normal sized meals. It spaces out the food so you have fewer times of acute discomfort, and I find it less overwhelming to keep snacking on small portions than to sit down to a large meal.

Have you been tested for gastic emptying? I have gastoparesis, which means my stomach does not empty properly, and so explains why just a tiny portion of food makes me feel full. When a normal person's stomach would be moving the food they'd eaten out of their stomach and down into their intestine, for me it just sits in my stomach for a long time before it finally starts slowly moving. There are meds. that help a bit with this. I believe they can even perform surgery in some extreme cases which stands a chance of helping. So it might be worth asking your doctor about this as there may be some treatments that could help if you have this problem.
09-16-2013, 11:13 AM   #9
ce1210
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I know you said that you had tried MM, but didn't like the fog...personally the fog is my favorite part, but they have new strains that are high CBD/low THC marijuana they you may find create far less fog and actually have more of the medical effects such as appetite stimulation, pain relief, etc...may be worth looking into, I wouldn't have any appetite whatsoever without it
09-23-2013, 05:18 PM   #10
Tikell
 
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hi there,
Thanks for the info. on the MM. I would probably enjoy the foggy brain feeling if I were not by myself because when I use it with others around me then I don't feel as vulnerable. I am interested in the high CBD/low THC MM. Do you know where I can get that? Would it be from a dispensary. I had a Humira injection on Friday so I have had four good days of eatting. BUT, I know the effects will soon start wearing off and then I will be unable to eat. Even with the HUMIRA my stomach never rumbles with hunger. It can be a scary feeling when a week goes by and I have had to force feed. Almost feels like I am dying. So depressing. I appreciate you sharing about your experience. Do you have to smoke MM everyday to eat? Do you have to smoke it before each meal? I have found that rubbing Voltaren Gel on my abdomen can help stimulate a bit of a desire to eat. Voltaren is an anti-inflammatory so perhaps it is reducing some of the intestinal inflammation when I rub it on my tummy. I am so desperate and will try anything. Thank you.
09-23-2013, 05:42 PM   #11
Tikell
 
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hi unxmas,
thanks for your response. I experience exactly the same thing that you do regarding appetite issues. Oh my gosh, I too can feel full after just a couple bites of food. I am going to ask my Gastro doc about the gastoparesis on my next visit. I am trying to eat small and frequent but it is sometimes hard to remember to eat because I have no physical symptoms of hunger. My husband is constantly having to tell me to have something to drink or eat. We can go somewhere for the day and I can go all day on just a apple or banana. I hate it, absolutely hate it. I too often sit down to eat a meal and feel the diarrhea urge but yet can't go? It is so strange. You are the first person I have talked to who experiences the same thing that I do. I often feel like such an oddity. I get so tired of going out with friends and forcing food down while watching everyone else enjoying their meal. I just had a humira injection and had been able to eat the past four days BUT, I know it will soon start wearing off and then I will struggle for about 9 days waiting for my next injection. The humira really doesn't do much anymore to help with the loose bowels. I know it sounds crazy but I would give anything to have a nice, firm BM. So many people take their appetite and healthy BMs fo granted. I have tried the various ensure drinks but they are so loaded with bad stuff that I have resorted to making my own drinks. I often make a veggie soup and then put it in the blender so I can drink it. For some reason, it is easier to drink then eat. I have a girlfriend of twenty years who went through a year of breast cancer. She told me that she would rather have gone through breast cancer (she is cancer free now) then to deal with what I have been dealing with for years now. This Crohn's disease is a brutal disease. Thanks for your kind words and encouragement.
09-24-2013, 09:34 AM   #12
ce1210
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Hey sry it took me a bit to get back to the forum, had a busy day yesterday...but yes I do use MM multiple times a day to have an appetite. If I use just a tiny bit in the morning then I am very hungry at breakfast and usually have a lil appetite around lunch still also. Then after work in the afternoon I use a lot haha and have an appetite until I fall asleep which I also have a lot of trouble doing without MM. As far as the high CBD/low THC strains I would say a medical dispensary or producing your own would be the only way to go about getting those, but lucky for you your in California so finding a good dispensary shouldn't be too hard and you could prob even grow your own legally. Where I am procuring MM is a bit more difficult....u can even get high CBD oils or tinctures at some dispensaries(or so I hear) so u don't have to smoke necessarily
09-24-2013, 09:38 AM   #13
ce1210
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I know how you feel when say that it almost feels like you are dying because its such an unnatural feeling to have your body completely give up on eating....really MM has been a lifesaver for me and the fog your experiencing and not liking when you are by yourself will become far less intense after you gain experience with the medicine so maybe try using it lightly in social settings first and as you begin to feel more comfortable u could begin trying it on your own.
10-05-2013, 01:49 PM   #14
Tikell
 
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I think I will try and call the MM dispensary close to where I live and see if they have one that doesn't make me loopy but can help with my appetite. I am just so desperate. No being able to eat is so very scary. I just have to figure this out. Thanks for all your comments.
10-08-2013, 05:28 PM   #15
ce1210
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Any luck with your appetite Tikell? I must say that I am quite jealous that you can just call up a local dispensary lol...how long must our government keep up this phony drug war?!?
10-09-2013, 08:24 AM   #16
ce1210
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Hey Tikell, was reading through some pretty interesting stuff on exercise and appetite stimulation. If you aren't in too much pain or ur crohn's isn't too active u could try starting a light weight lifting regimen. Aerobic or more intense anaerobic exercise can cause a decrease in appetite while weight lifting generally tends to do the opposite. I used to lift weights everyday and I was ALWAYS hungry. I plan to get back to that soon as I feel like I'm pulling out of my 1st flare, but I'm having trouble with arthritis so I'm a bit concerned that I'll be "all stove up". But maybe a gentle weight lifting program could help?
10-10-2013, 04:43 AM   #17
UnXmas
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Hey Tikell, was reading through some pretty interesting stuff on exercise and appetite stimulation. If you aren't in too much pain or ur crohn's isn't too active u could try starting a light weight lifting regimen. Aerobic or more intense anaerobic exercise can cause a decrease in appetite while weight lifting generally tends to do the opposite. I used to lift weights everyday and I was ALWAYS hungry. I plan to get back to that soon as I feel like I'm pulling out of my 1st flare, but I'm having trouble with arthritis so I'm a bit concerned that I'll be "all stove up". But maybe a gentle weight lifting program could help?
I think exercise has many benefits, but personally it does nothing for my appetite. That's the thing I find about having no appetite - for me it means I literally have none; I don't know what hunger feels like, there's nothing there for exercise (or anything else) to stimulate.

I was thinking about this recently because I'm trying to gain weight, as usual, and am feeling stuffed all the time. I realised it's harder for me to eat now than it was around this time last year. When I thought about it I realised that it seemed less difficult to eat when I was on prednisone. You probably know that in many people prednisone can cause extreme hunger. At the time I was on it, I thought I just wasn't getting that particular side effect as I never felt hungry, and did steel feel full all the time. But now comparing how I felt on it with how I feel off it, I think that prednisone, while it didn't stop me feeling full, did make me feel not quite as full as I feel normally.
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