How on earth can you get 2000 calories a day in your body? (RANT/PLEA)

Since July, I've been having a terrible time with weight loss -- am down to 125 now from over 145 on a 5'8" frame. Most of the weight loss has come during two week-plus bouts of nausea that may have been my period, a reaction to Lialda, or both. Anyway, even when I'm not nauseous my diet feels so restricted and my appetite is so shrunken that I can't seem to get in enough calories to maintain, much less gain weight. And I'm feeling so weak; my reserves are depleted.

And I just had the heaviest bout of bleeding in a week! And my husband and daughter went camping so i could rest (very considerate, but I miss them!).

I will be trying Rowasa in a few days, and there's a chance the nausea might just start up again.

Help. Ideas, please.

Thanks, dakotagirl! Nausea is the pits.

I bought some Carnation Instant Breakfast today -- will have some tomorrow. I've also used some whey powder in milk. I'm eating a lot of avocadoes, spoonfuls of sesame tahini or peanut butter, bananas, rice, chicken, spinach, crackers... I'm getting sick of the same old foods, but I'm bleeding often enough that I feel like I have to stick with really bland things.

I have taken meclizine (basically the same as Dramamine) on occasion, but it doesn't help a lot with the food aversion (I forgot to mention that when I get nauseous, food revolts me). My doctor gave me a prescription for Phenergan to try if it gets bad -- but one of its side effects can be nausea! Go figure. I tend to be very sensitive to medications, unfortunately.

Thanks for hearing my rant...I just want so badly to get better.
emory

My Dad has lung cancer, and was having a serious problem with nausea, he couldn't keep any of his meds down, but then his Dr. perscribed droabinol, that may be spelled wrong, but its a pill that has anti-nausea effects and i think it may be derived from some part of the marijuana plant, but does not have any druggy side effects that he has noticed. Anyway, ever since he started taking those he has been able to keep his meds down and has not had any problems with nausea. As for food.. I do the same thing, eat hella avocados but im seriously underweight too and am starting to think it just comes with the territory of this diagnosis.

Olive oil is a good suggestion. Thanks, Delarge. And thank you for the anti-nausea prescription suggestion, winni.

Seriously underweight is tough -- it doesn't leave you with much energy. And hamley, I agree, it's the speed of the weight loss that's really scary.

I also get sicker if I get hungry; sometimes it takes me a little too long to realize that, though, and the damage is done. It seems like I have to eat every 2 hours! And still lose weight.

My GI mentioned Zofran as another alternative; good to know it works well for you. Thank you, MMMNAVY!

also, drink Ensure Plus like 3 times a day... sort of along the Instant Breakfast line. Many people recommended Instant Breakfast as a way to add calories when I had to, but I couldn't deal with the milk at the time. Soy or regular! Ensure is good because it's lactose-free, gluten-free.... it tastes good also. The chocolate, that is.

eat protein with every meal.....chicken, eggs, fish, beef, pork..whatever you're in the mood for.

Lots of milk products can cause discomfort/diarrhea...just remember that if you have it, it's more what you're eating rather than flaring.
Lactaid could help with that.

I went from 125 to 109 (I'm 5'8" as well)....imagine that?? I've since gone up to 160 tops now at 143ish....can stand to lose a bit more but in the form to tone rather than weight-wise.

125 is still in the safe zone, but you will be able to gain the weight by eating often during the day, don't do too much exercise such as long cardio...do more weight /toning / walking to help maintain the calories rather than burn them off.

It took me years to gain the weight....middle age helped..lol!

I never have had a food aversion, however...I enjoy eating and haven't blamed food for my UC symptoms. That might be part of it.

Hang tough....eat what you like to eat...once you get your appetite back, you can make the changes to increase areas that will keep you wanting to eat.

Hope you're enjoying your alone time..

quincy

Hey Emory,

Sorry to hear about your continued problems getting your health under control. I'd go with Quincy's suggestion: since you feel like crap anyways, you might as well eat what you want. That might make it easier to get your calories. Right now I'm on a low residue diet, but I throw in a little something that satisifies my cravings. Eating bland gets so old, and I'm hoping that it doesn't end up being a lifetime thing. I've been losing weight as well, but I started a few pounds overweight, so I'm not complaining too much yet.

If you don't feel you can eat what you want, despite the nausea, you need to give your body sustenance, so at the very least make sure that you are getting your daily nutrition needs. It is not just calories you need, but healthy calories. If you've been drinking lots of water to keep hydrated, you might want to switch to Gatorade to help with electrolytes and give you some extra calories.

Too bad you couldn't join the family for camping. That would probably help some with your anxiety and depression. I know it hasn't been all that long that you've been on the effexor for it to help with the depression, so you've got find something that will lift your spirits. Are you able to get out of the house at all? Maybe at least travel out to a scenic trailhead with your husband, let him go on a short jaunt, you can maybe go for a walk or even just sit and enjoy the scenery?

I sure hope that things turn around for you soon.

Well, Remeron is the one antidepressant that helps with sleep...and will help you gain weight from what I've read. My neighbour uses Remeron for sleep and her chronic pain/health issues that have recently increased, and she's commented how much it's helped her. I don't know the dosage she's on..I could ask if you like.

You might want to consider to talk to a therapist to help you deal with anxiety in general. I know it's difficult to turn off the thoughts and interrupt the cycle....not eating based on how you're feeling or tasting isn't a good thing. Good food many times doesn't taste good, but it can be in your favour eventually that you're finding foods too sweet.
Medications can cause dry mouth which in turn can change taste receptors. ARe you suffering as well from sinus issues?

What part are you worried about regarding Rowasa?

The pull of depression can be very strong, especially when anxiety is happening for me. I also use depression to stop the anxiety when there's an on-going issue. I've found that understanding the cycle and not "running" helps. It's not so good for my motivation, but I'm not as scared about it.

Hang tough...I think as soon as you're noticing an improvement, your moods will improve as well.

Try not to get too fixated on the weight issue...eat what you like, eat often in smaller amounts, and don't forget to eat protein.

quincy

Way too bad that you aren't enjoying any of your favorite foods right now. It would be at least comforting if you could indulge yourself. Once again, Quincy is the wise one who has some wonderful advice and suggestions. Counseling might be a very viable and helpful tool for you. Just a thought about effexor, when I tried it, it had an activating effect on me giving me more energy. It also had a couple of other unintentional mental effects on me, so needless to say, I did not stay on the effexor. If effexor has helped you quicker in the past, perhaps you do need to try something else. I'm surprised you are still having trouble sleeping despite the clonazepam and trazodone. The combo of those would knock me out, and I'm a pretty big guy. You must have a decent tolerance for meds.

Depression really does feed off itself...you don't feel like doing anything so you don't, then you feel bad for wasting time and not doing anything, then you don't feel like doing anything because you're depressed, etc. Throw in the UC and being sick, and you've got the perfect mix to becoming really depressed. Does your husband know and understand how you are feeling right now? He is probably one of your biggest sources of support, so he needs to know what is happening with you.

It was good to hear that you at least tried to get out camping earlier this summer. I remember a backpacking trip I went on fairly soon after my initial diagnosis. I was fine hiking in, but during the night, I was in and out the tent so much, my tent mate barely got any sleep. Plus, even though I had found a decent spot to relieve myself, it was not nearly as user friendly in pitch black, and I was worried about bears in the area. I think that was my last backpack trip. This may sound hokie, but maybe you could try a camping trip with the fam in your backyard? I know how important getting out into nature is to you, and that might be a good substitute.

I'm not very familiar with any of the UC meds you are on, so I can't offer any suggestions, but that is what the more experienced members are for. Quincy seems to be an extremely knowledgable individual, so we are lucky to have her helping people on the forum. Have you tried prednisone to help get the flare under control? Or is that what the proctoform and hc suppositories are for? Much as I hate to say it, since I started on prednisone last week, my symptoms have gotten better. I'm not 'cured', but at least I've reduced the number of daily trips to the restroom. It is a temporary fix, but maybe it'll help me get under control so I can taper off soon. Steroids and I don't get along very well.

Hi emory.....Thanks for the kind words (Brandon as well)I can give suggestions based on what I've learned/read/experienced..but one never knows what can work for someone else because some doctors don't seem to prescribe the same across the board. ixnay on the octorday...backseat works for me..lol!

I didn't realise a higher dosage of Remeron can have less side effects, and I do keep forgetting to factor in the brain tumour surgery.
Insomnia sucks...especially when your life revolves around "normal" hours.
Medications can make it either worse or better...no matter if they're for insomnia or not.

Maybe for you relaxation type of exercise/regimen can help with your situation? Biofeedback (tried it but I fell asleep during the learning process) or meditation (never tried it ) or something along those lines. Maybe the acupuncture can be used to help that situation? WE don't always need meds.

I know that not being able to fall asleep can definitely enhance the anxiety which definitely makes things worse. Reading or watching TV helps, but I have to do it BEFORE the anxiety thoughts take over. I have a crazy sleep schedule, trying to make it somewhat "normal"..but I can go some days in a row with 3 - 5 hours, and then crash after that. I did try sleep meds...didn't work. I did try ativan, which did work, but made me more depressed from taking them during the day to help my anxiety. After taking Effexor, I quit the ativan, but recently from some weird heart fluttering (which the doc thinks is anxiety) she gave me a low dosage of clonazepam (.25mg). I don't like the feeling from them and they hit me long after I take them.

I had a heart echogram done last week (I have a mild murmur)...have to make the appointment to see the doc soon for the results. She ordered it in March....nothing like speedy appointments..lol!

Regarding the Rowasa...try half a bottle firstly. Put the rest in the fridge (unless it says on the instructions to not put below a certain temp).

Your magic dosage might be a lower dosage, if it works, then ask for the 2g prescription.

It's great you have good support from your husband...

Keep us posted after you try the Rowasa.
quincy

Oddly enough, I've been getting the heart flutters lately. At first I was attributing it to the Adderall XR I was taking to give me some pep in my day. So I stopped taking it, but the flutters continue intermittently. I'm not sure if they occur during times of anxiety, so I'll pay a little more attention. I do try to do deep breathing exercises, when you inflate your chest and not just you abdomen. A few breaths like that calms me some. I might suggest you find a different talk therapist from your med doctor. Or maybe explain that you want to dedicate every two sessions for current events, and then one session for meds?

The main problem I have with prednisone (aside from it giving me a stomach of steel and a false sense of security) is that my back and face break out really bad, and I have a really short fuse if I'm not paying attention. Even if I am paying attention, I can still over-react to things, which people notice since I am usually a low-key guy. Another side-effect that might be good for you is that it can make people overeat, although some people just get the moon face, which is basically water retention in the face and abdomen. Who knows, maybe prednisone pills would do you some good? I keep forgetting about the brain surgery as well, so maybe you are on a tight leash as far as meds are concerned?

Qunicy, clonazepam has two formulas (I'm not sure how to differentiate them except a minty taste) but the minty one is designed to be placed under the tongue for instant release. I've never needed it for that, but I've been told it is very effective. Clonazepam used to be very calming for me, but now it is just plain sedating. I take it only on days when I'm expecting a stressful day.

Emory, I'm glad your husband is providing the support he can. I'd hate to think that you were doing this alone. This disease is causes enough disruption without trying to deal with partners that don't understand. Give yourself credit for the small victories, like making it to work, getting errands done, playing with your child. Let me know if you need a pat on the back every now and then, or even if you just need to vent. Keep looking for the small stuff to brighten your day, like the Cinderella flashlight. That brought a smile to my face. Stay strong.

emory....no, never taken pred...I had one doctor stand in for mine last minute and he suggested that the first-line route for me would have been pred. I told him I was relieved he wasn't my doctor!

No, I'd totally lose it on pred I think. I already have depression/anxiety and know my moods wouldn't cope well with it....guaranteed. But, I would possibly consider a 10 day taper..no more, if it was absolutely necessary.

I do, however, take an inhaled corticosteroid for asthma.

The flutters do also come with pressure on my abdomen (which I have to remember to tell my doctor). I had them today at a funeral. I had seen people from my childhood as well as family and neighbours (which are kind of like family)...it was rejuvenating for me to see them all grown up. One woman I hadn't seen in 42 years. I was best friends with her sister and they moved away...I haven't seen her sister since..sheesh. I needed to have a 2½ hour snooze afterward..lol!

I'm pretty much a night owl, but if I have to get up early the next day, it's difficult for me to get to sleep. It's early at this moment according to my schedule...but since I've gotten "older"..lol...I do tend to conk out in the evening if Im watching TV and my cat is laying on my lap (it's her fault). If I'm out or doing hair...I'm hyper and won't get to sleep till the normal late time.

I know I've inherited that quality...most of my family are nightowls. My mom could function a full time public health nursing job, come home and cook, go out in the evening, and sometimes start a project at midnight. She was able to do 10 minute cat naps...amazing energy and motivation that woman had (which I've not inherited..).

I envy your ability to read so many books!! I like reading, but do find I fall asleep..hence the suggestion. Can take me forever to read a book since I only read at bedtime.

I know what you mean about the meds and not wanting to stay on them for sleeping, etc. I do hope the Remeron is a good med for you. Considering you had brain surgery, the changes in sleep patterns must be devastating durin the most stressful times.

It seems you have a good home situation....that's worth a lot in one's coping. Sometimes we don't have a choice regarding meds.

How crazy is it that the doc gave you 2 year expired meds? clearly he doesn't hand them out much..lol!

Hope he calls and you can try them at least. Maybe you should ask for a 2g dosage since he has to call it in?

I agree with Brandon regarding the small successes. It's difficult to do when something isn't working out...

Looking forward to hearing how your Friday appointment works out with the second opinion GI.

Hope the week has you feeling better daily so that you don't have any throwing up happenng!


Brandon, my clonazepam isn't sublingual, but I do let it dissolve in my mouth anyway. Still takes about an hour for me to feel it.
It pretty much has me feeling wonky...I don't take it often, but did this evening.

Hope you both have a good week!
H