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

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emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 9/13/2008 6:17 PM (GMT -6)   
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.
40 years old and female
Dx ulcerative proctitis, 3-5 cm, June 2008 (after 5 weeks of blood and mucous) and still flaring
UNTIL 9/4/08: Canasa 1000 mg suppositories nightly, 25 mg hydrocortisone suppositories in a.m.
CURRENTLY: Proctofoam at bedtime
Effexor 37.5, Clonazepam .5 mg (or more) and Trazodone 50 mg for sleep
2.5 mg methimazole for thyroid
Recently started probiotic (Garden of Life Primal Defense Ultra) and acupuncture
Osteopenia (and I haven't even taken steroids!)


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 9/13/2008 8:20 PM (GMT -6)   
I have used Carnation Instant Breakfast to make sure I get adequate calories and vitamins. You mix it with milk (dairy or soy).

In the past people have mentioned a product called Muscle Milk. Be sure to check ingredients and avoid artificial sweeteners.

Have you tried taking Dramamine to help with the nausea? I will use it on occasion. It's not something you want to use often.

What types of food are you eating? What are you able to eat?

I hate feeling nauseated. I feel for you!
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  Remission?!?!?
Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
Remicade: 1st infusion 06/17/08:  Next infusion: 10/07/08
Last Prednisone dose:  7/15/08
 
Co-Moderator UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 9/13/2008 8:26 PM (GMT -6)   
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
40 years old and female
Dx ulcerative proctitis, 3-5 cm, June 2008 (after 5 weeks of blood and mucous) and still flaring
UNTIL 9/4/08: Canasa 1000 mg suppositories nightly, 25 mg hydrocortisone suppositories in a.m.
CURRENTLY: Proctofoam at bedtime
Effexor 37.5, Clonazepam .5 mg (or more) and Trazodone 50 mg for sleep
2.5 mg methimazole for thyroid
Recently started probiotic (Garden of Life Primal Defense Ultra) and acupuncture
Osteopenia (and I haven't even taken steroids!)


hamley
Regular Member


Date Joined Sep 2008
Total Posts : 52
   Posted 9/13/2008 9:09 PM (GMT -6)   
Emory, I am having the same problem with weight loss. Sine I was diagnosed on Labor Day, I have lost 10 lbs! I keep hearing from my parents how thin I am...and that gets annoying after awhile. I now weight 140, which is normal, but the fact that I lost weight that quickly is a little frightening. I am afraid to eat certain things since I've been in a flare since I was diagnosed... I don't have any advice, because I basically am looking for supplement foods as well, but I can sympathize with you! I think I will try the carnatoin breakfast with the soy milk. Let me know if you find anything else that works!

Feel better :)

Diagnosed 9/1/08






<FONT color=#0000ff>Asacol 400 mg 2 x3


<FONT color=#0000ff>Percocet 5-325 mg


winni
Regular Member


Date Joined Jul 2006
Total Posts : 179
   Posted 9/13/2008 9:39 PM (GMT -6)   
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.
Winni, 25

Diagnosed UC july 2006.
medications: colazal 9 daily,
5 mg pred,and tapering. 75 mg 6 mp
supplements:calcium, aloe gel, pro-biotics, bee propolis, omega 3 oil, kombucha
osteopenia from all this prednisone.
http://www.myspace.com/harshrealmbro


Delarge
Regular Member


Date Joined Mar 2007
Total Posts : 157
   Posted 9/13/2008 9:45 PM (GMT -6)   
If your appetite is seriously impaired I would suggest ingesting olive oil. As unpleasant as it may sound, 100ML (two shots) will provide you with 800 calories.

Post Edited (Delarge) : 9/14/2008 10:16:09 AM (GMT-6)


emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 9/14/2008 7:20 AM (GMT -6)   
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.
40 years old and female
Dx ulcerative proctitis, 3-5 cm, June 2008 (after 5 weeks of blood and mucous) and still flaring
UNTIL 9/4/08: Canasa 1000 mg suppositories nightly, 25 mg hydrocortisone suppositories in a.m.
CURRENTLY: Proctofoam at bedtime
Effexor 37.5, Clonazepam .5 mg (or more) and Trazodone 50 mg for sleep
2.5 mg methimazole for thyroid
Recently started probiotic (Garden of Life Primal Defense Ultra) and acupuncture
Osteopenia (and I haven't even taken steroids!)


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 9/14/2008 7:43 AM (GMT -6)   
emory what about zofran? Different antinausea med and comes in a pepperminty tasting meltaway (there are other forms like pill or injection). I have crohns, but found this really works well for me. It was so bad I was throwing up on a daily basis for about 2 years. Hope you find something that works.  There are some home remedies as well such a ginger root or peppermint tea, sprite/ginger ale/7up, etc. 
p.s. I carry around a container of creamy pb and some crackers with me, because if I get hungry I get sicker (i.e. more nausea). Which also is why I gained alot of weight. 


Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...

Post Edited (MMMNAVY) : 9/15/2008 7:10:18 AM (GMT-6)


emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 9/14/2008 9:09 AM (GMT -6)   
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!
40 years old and female
Dx ulcerative proctitis, 3-5 cm, June 2008 (after 5 weeks of blood and mucous) and still flaring
UNTIL 9/4/08: Canasa 1000 mg suppositories nightly, 25 mg hydrocortisone suppositories in a.m.
CURRENTLY: Proctofoam at bedtime
Effexor 37.5, Clonazepam .5 mg (or more) and Trazodone 50 mg for sleep
2.5 mg methimazole for thyroid
Recently started probiotic (Garden of Life Primal Defense Ultra) and acupuncture
Osteopenia (and I haven't even taken steroids!)


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 9/14/2008 9:30 AM (GMT -6)   

I am with those who get sicker when hungry.  Find out you CAN eat without problems and eat small amounts throughout the day.  I find crackers, lite cheese, toast w/pb and low fiber cereal my staples.

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis
canasa and proctofoam
colazal
Probiotic Align
Prilosec for GERD
Inderol for hypertension
Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Rowasa every other night for now.
 
 
 
 
 
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 9/14/2008 12:16 PM (GMT -6)   
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.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


Lucky777
Regular Member


Date Joined Aug 2008
Total Posts : 128
   Posted 9/14/2008 12:44 PM (GMT -6)   
Carnation is a great way to compliment, but I also like slimfast (funny as that sounds). It has just a few less calories than carnation and I think it tastes better. I use Silk soy milk because of the zero lactose and I really like the flavor now over regular milk. You can easily meet the 2000 calorie a day line if you do this 3 x a day and eat bananas and peaches, with a white-meat sandwich for lunch and dinner.

Also, can peanut butter help you at all? I ask because some people are allergic and others just can't take peanuts with their symptoms. But if you can handle peanut butter, I would check out some of the all natural stuff. Awesome snack (spoonfool) or sandwich, or even to dip the banana in!

Hopefully something here helps you.
Sean - 31
Prednisone again for another 12 days, 25mg
UC Since April 2006, diagnosed 2007 (Flex-Sig)
4 x Liada (4 am)
175mg Azathioprine
2 x Imodium (on days where I have to leave the house)
Remicade infusion starting
1 x 1000mg Fish Oil Cap
Activia yogurt and SCD-like foods to see if I can make a change. Just got in my 4 day trial of Haldi.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30591
   Posted 9/14/2008 1:24 PM (GMT -6)   
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
*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 4(Natural Factors Protec) bedtime + Primadophilus Reuteri Pearls occasionally
~multi-digestive enzymes as needed
~Ranitidine,Pariet (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 9/14/2008 2:17 PM (GMT -6)   
Thanks, Eva Lou, Lucky777, quincy -- I appreciate the suggestions and the support.

Quincy, I know I'm still in the safe zone, but am anxious about what might happen when I try Rowasa (as soon as my period is over). And I guess that gets at the heart of it: my anxiety is ramping up, and until I get that under control, nothing else is going to fall into place. But how? I'm already on meds for it, and they're barely working. Depression is catching up with me. I can only run so fast.
40 years old and female
Dx ulcerative proctitis, 3-5 cm, June 2008 (after 5 weeks of blood and mucous) and still flaring
UNTIL 9/4/08: Canasa 1000 mg suppositories nightly, 25 mg hydrocortisone suppositories in a.m.
CURRENTLY: Proctofoam at bedtime
Effexor 37.5, Clonazepam .5 mg (or more) and Trazodone 50 mg for sleep
2.5 mg methimazole for thyroid
Recently started probiotic (Garden of Life Primal Defense Ultra) and acupuncture
Osteopenia (and I haven't even taken steroids!)


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 9/14/2008 3:20 PM (GMT -6)   
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.
Brandon
 
36 y.o. male
Diagnosed w/ moderate UC in May '06 - currently flaring
Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda, Prednisone 30mg


emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 9/14/2008 4:07 PM (GMT -6)   
Hi Brandon,

Thanks for writing. It's always good to hear from you. I'm going with your suggestion and Quincy's -- problem is, eating feels like work now, and a lot of things just don't sound good anymore. My taste buds seem to have changed. I had some ice cream the other night and it was so sweet I could hardly get it down. And I love ice cream! No taste for chocolate right now either. That, and the fact that I can hardly read a novel (one of my favorite things to do!) lets me know I'm really down.

The family camping trip was my husband's idea to get me some rest. I knew in my heart that it probably wouldn't work -- I need them as distraction -- but he wanted to help so much, and I couldn't face sleeping on the ground and using a pit toilet this weekend. (Have done it earlier this summer.) We're supposed to have beautiful warm weather this week, so I'll try to get out.

The past two times I was on Effexor, it had long since kicked in by now, but here I am, still sleeping poorly, still struggling to feel joy in everyday pleasures, still feeling like I need more clonazepam to kill that horrible anxious buzz. Bottom line is, this time I'm just plain scared. My doctor has suggested I try Remeron to help with anxiety, and though I hate to add more drugs to the list, I might have to.

I hope you're feeling better this week.

emory
40 years old and female
Dx ulcerative proctitis, 3-5 cm, June 2008 (after 5 weeks of blood and mucous) and still flaring
UNTIL 9/4/08: Canasa 1000 mg suppositories nightly, 25 mg hydrocortisone suppositories in a.m.
CURRENTLY: Proctofoam at bedtime
Effexor 37.5, Clonazepam .5 mg (or more) and Trazodone 50 mg for sleep
2.5 mg methimazole for thyroid
Recently started probiotic (Garden of Life Primal Defense Ultra) and acupuncture
Osteopenia (and I haven't even taken steroids!)


quincy
Elite Member


Date Joined May 2003
Total Posts : 30591
   Posted 9/14/2008 5:56 PM (GMT -6)   
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
*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 4(Natural Factors Protec) bedtime + Primadophilus Reuteri Pearls occasionally
~multi-digestive enzymes as needed
~Ranitidine,Pariet (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 9/14/2008 6:51 PM (GMT -6)   
Quincy, you are a blessing. Yes, the sleep and weight gain are the reasons I'm willing to consider Remeron. My starting dose would be 30 mg, maybe working down to 15; apparently, you get more side effects at lower doses with this medication.

Ironically, I am talking to a therapist. Unfortunately, my psychiatrist (who is a good talk therapist) and I have spent so much time talking about medications lately there's not a lot of time left for coping mechanisms. This level of anxiety is relatively new to me; it came after my brain tumor surgery 3 years ago, and has always been brought on by insomnia in past instances. This time it's situational, and I'm having a hard time not projecting bad futures for my UC coupled with anxiety/depression.

I hadn't thought about taste receptors being changed by dry mouth, but I definitely have dry mouth. No sinus issues, though. You really should be a doctor, quincy. (How many times have you heard that?)

My worry about Rowasa is this: I've tried Lialda + Canasa twice now, both times near my period, and both times ended up nauseous, etc. for days. This time I have my period, but only mild nausea (and that seems to be anxiety-driven as I start worrying about Rowasa). It seems likely to me that mesalamine makes me sick; I've experienced this at a dose of only 2.2 g (1 Lialda + 1 Canasa) per day. Rowasa has 4 g; maybe I can get the 2 g dose or use a half bottle, I don't know. It may make me very ill. But I have to try. The Proctofoam and hydrocortisone suppositories don't seem to be helping. I'm desperate for this to work, and terrified to try it at the same time.

But I'll hang tough. Thanks for all the good advice.
emory
40 years old and female
Dx ulcerative proctitis, 3-5 cm, June 2008 (after 5 weeks of blood and mucous) and still flaring
UNTIL 9/4/08: Canasa 1000 mg suppositories nightly, 25 mg hydrocortisone suppositories in a.m.
CURRENTLY: Proctofoam at bedtime
Effexor 37.5, Clonazepam .5 mg (or more) and Trazodone 50 mg for sleep
2.5 mg methimazole for thyroid
Recently started probiotic (Garden of Life Primal Defense Ultra) and acupuncture
Osteopenia (and I haven't even taken steroids!)


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 9/14/2008 6:58 PM (GMT -6)   
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.
Brandon
 
36 y.o. male
Diagnosed w/ moderate UC in May '06 - currently flaring
Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda, Prednisone 30mg


emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 9/14/2008 7:38 PM (GMT -6)   
EVERYONE is surprised I'm still having trouble sleeping despite the clonazepam and trazodone. The thing is, I don't have a decent tolerance for meds; I tend to respond to very low doses. I just have crazy insomnia. In the past, I have taken all sorts of sleep aids (Ambien, Lunesta, etc.) and still stayed awake all night long. Right now, even with the heavy hit of clonazepam/trazodone, once or twice a week I'll wake up in the night, not anxious, but just wide awake, and not go back to sleep. Then I'll feel jittery sick the next day; the fewer hours of sleep, the worse I feel. It seems to be a gift left to me in the wake of surgery for a benign brain tumor 3 years ago.

Anyway, I'm doing my best to fight off depression, and trying to keep my husband posted, though it's hard for him to truly understand.

I haven't tried prednisone; am afraid of the side effects (insomnia? depression?), but glad to hear it's helping you. Makes me more willing to give it a try if/when needed.

Thanks for your listening ear, Brandon --
emory
40 years old and female
Dx ulcerative proctitis, 3-5 cm, June 2008 (after 5 weeks of blood and mucous) and still flaring
UNTIL 9/4/08: Canasa 1000 mg suppositories nightly, 25 mg hydrocortisone suppositories in a.m.
CURRENTLY: Proctofoam at bedtime
Effexor 37.5, Clonazepam .5 mg (or more) and Trazodone 50 mg for sleep
2.5 mg methimazole for thyroid
Recently started probiotic (Garden of Life Primal Defense Ultra) and acupuncture
Osteopenia (and I haven't even taken steroids!)


quincy
Elite Member


Date Joined May 2003
Total Posts : 30591
   Posted 9/15/2008 12:12 AM (GMT -6)   
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
*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 4(Natural Factors Protec) bedtime + Primadophilus Reuteri Pearls occasionally
~multi-digestive enzymes as needed
~Ranitidine,Pariet (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 9/15/2008 4:18 PM (GMT -6)   
Oh, quincy, I suspected you were an insomniac too! (Some of your posts do come in at awfully odd hours...) My acupuncture is focusing on relaxation as well as colitis, and I do yoga as well. Have tried meditation, but find that it works best for me when I'm NOT anxious. Very hard to use it to control anxiety once it's there. But when I'm awake in the middle of the night, I do try lots of breathing techniques and acupressure points; something to do at least...

Right now reading and watching TV aren't providing much of a distraction (and I miss reading so much! I usually read 8-10 books a month, and in the last few months, only 3-4 total). Feels like all I do is 1) try to eat, 2) take my meds on schedule, and 3) try to keep our household life and my part-time work as "normal" as possible. It will get better, I know. I'm just so disappointed that in the past, Effexor had a sedative effect for me; this time seems to be the opposite. I'm like you, can have several nights in a row of very bad sleep, but clonazepam/trazodone helps for the most part. I just don't want to be on them forever! In past episodes, I would already have tapered off and been sleeping okay. Remeron, here I come.

Can't try the Rowasa yet -- my GI gave me samples that expired in 2006! (And no prescription...) So I have a call in. I was hoping to try on Wednesday, but we'll see how it goes. I also have a second opinion with another GI on Friday, so I want to be "well" then (i.e., not throwing up). My GI is out of town through the weekend starting tomorrow, so that's another reason to procrastinate. I really do want to get this flare under control, though...honest!

That weird heart fluttering -- I've had something like that. I'm sorry you have to wait so long to get checked out!

Be well,
emory
40 years old and female
Dx ulcerative proctitis, 3-5 cm, June 2008 (after 5 weeks of blood and mucous) and still flaring
UNTIL 9/4/08: Canasa 1000 mg suppositories nightly, 25 mg hydrocortisone suppositories in a.m.
CURRENTLY: Proctofoam at bedtime
Effexor 37.5, Clonazepam .5 mg (or more) and Trazodone 50 mg for sleep
2.5 mg methimazole for thyroid
Recently started probiotic (Garden of Life Primal Defense Ultra) and acupuncture
Osteopenia (and I haven't even taken steroids!)


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 9/15/2008 8:00 PM (GMT -6)   
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.
Brandon
 
36 y.o. male
Diagnosed w/ moderate UC in May '06 - currently flaring
Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda, Prednisone 30mg


emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 9/15/2008 8:45 PM (GMT -6)   
Brandon,

I think I read somewhere about people with UC being prone to heart flutters -- something relating to the autonomic nervous system, maybe. Did a quick search of my notes, but couldn't come up with it. (Have read too much and absorbed too little, maybe.) Mine don't seem to come with anxiety; just sometimes out of the blue I'll feel little butterflies around my heart.

If I could afford another therapist (in terms of time and money), I'd certainly consider your suggestion. My psychiatrist really is good at weaving in how I'm doing currently and giving me plenty of time to talk -- it's just the meds and the colitis are front and center right now.

Thanks for filling me in on your prednisone experience. I am mostly nervous about the insomnia. (Quincy, have you ever taken prednisone? What did it do to your sleep?) But my mom swears she feels great on prednisone and sleeps fine, so who knows? I have been pretty sensitive to meds since surgery, but I wouldn't say I'm on a tight leash -- if anything, there are far too many pharmaceuticals in this body!

Brandon, thanks for reminding me to feel good about the small victories. I hope someone's doing the same for you. In your case, you should give yourself a huge pat on the back for going out of your way to send kind words of encouragement when they're very much needed. What good friends I've found here on the forum. Such a blessing.

Stay strong, yourself --
emory
40 years old and female
Dx ulcerative proctitis, 3-5 cm, June 2008 (after 5 weeks of blood and mucous) and still flaring
UNTIL 9/4/08: Canasa 1000 mg suppositories nightly, 25 mg hydrocortisone suppositories in a.m.
CURRENTLY: Proctofoam at bedtime
Effexor 37.5, Clonazepam .5 mg (or more) and Trazodone 50 mg for sleep
2.5 mg methimazole for thyroid
Recently started probiotic (Garden of Life Primal Defense Ultra) and acupuncture
Osteopenia (and I haven't even taken steroids!)


quincy
Elite Member


Date Joined May 2003
Total Posts : 30591
   Posted 9/16/2008 12:33 AM (GMT -6)   
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
*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 4(Natural Factors Protec) bedtime + Primadophilus Reuteri Pearls occasionally
~multi-digestive enzymes as needed
~Ranitidine,Pariet (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 

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