getting my strength back.

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MattwUC
New Member


Date Joined Aug 2009
Total Posts : 8
   Posted 8/6/2009 12:02 PM (GMT -6)   
I was first diagnosed with UC about 4 years ago.  I can remember it took quite a while to get back on my feet.  Recently not realizing what was happening until I saw blood that a flare-up has occured.  I have been in the hospital for the past 2 weeks and have finally been let out yesterday after recieving remicade.  I havent really eaten anything and need ideas on how to slowly gain my strength back.  I am on prednisone, 8 of them a day and asacol 3 times twice daily.  The cramping is bad to the point where I dont even want to move.  When I move then I am finding myself running to the bathroom.  I have lost alot of weight and seem so weak.  I wake up drenched in sweat and am having wierd dreams.  What might be causing this?  Does prednisone make anyone else feel anxious or jittery?

Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 8/6/2009 1:44 PM (GMT -6)   
Hi Matt, and welcome to HealingWell. Sounds like you've been on a rough road! First off, is the Remicade helping at all, or are you still having the cramping etc? The Pred is probably causing the strange dreams, jittery, and sweats. You might want to try some Gatorade to get yourself hydrated and the electrolytes back into your system. Also some other good things are natural creamy peanut butter, applesauce, scrambled eggs for protein. You'll have to assess which foods you can tolerate. I hope you are feeling better soon and that the Remicade kicks in to help you gain back some strength. Take care and keep us updated as to how you are doing. Again, welcome!

Carol

Remicade - will have my 30th infusion on September 2 
Vitamin B-12/Biotin, Probiotics, Vitamin D-3 (2000 IU)
 
Co-Moderator for the UC Forum
 
 


MattwUC
New Member


Date Joined Aug 2009
Total Posts : 8
   Posted 8/6/2009 5:08 PM (GMT -6)   
I just took the remicade monday. I have been released from the hospital and decided to come to my parents for a while so that I am not alone at home. The mornings are generally rough and at night. While i was in the hospital I went for almost 4 days without eating. I was throwing up at night and had severe stomach pains. Today i have gone most of the day with just minor cramps. Tried eating some soup, canned peaches and chicken with rice all over small portions. I get to the point where I am comfortable then I am scared to move. I am going to try and get lots of rest throughout the day. my body is so weak from not eating and not excersising.

Also taking 50mg APO-AZATHIOPRINE, ASACOL, and PREDNISONE.

25yr old from port elgin ontario

sirenshooter
Veteran Member


Date Joined Jun 2009
Total Posts : 2011
   Posted 8/6/2009 5:32 PM (GMT -6)   
There is a protein drink made by Bolthouse Farms that is mocha cappucino flavored and it is amazing. I haven't tried it to regain strength, but because of the protein and vitamins I imagine it would be good. So you get your coffee taste without the bowel-irritating caffiene =)
19yr old female diagnosed with UC (pancolitis) in 2005 at age 15
125mg Azathioprine 1xday / 1 Mesalamine enema every night /
2000mg Fish Oil 1xday / 500mg Turmeric 3xday /
450mg Boswellia 1xday / 400IU Vitamin E 1xday
Arthritis in both knees
Also: asthma, acid reflux, and Reynaud's Syndrome


MattwUC
New Member


Date Joined Aug 2009
Total Posts : 8
   Posted 8/6/2009 5:45 PM (GMT -6)   
Should I be taking any suppliments while I am trying to get better?? Vitamins or anything?? I have to go give blood now once a week to make sure my cell counts dont drop..and back to get another dose of remicade through IV.

When I was first diagnosed with this I never did anything like this.. i just ate my prescribed pills..ate a bland diet and one day was just better.... from then on in I ate, drank partied like it never happened...then it just came back!
so frusterating

jewelknit
Regular Member


Date Joined Jul 2009
Total Posts : 32
   Posted 8/6/2009 6:15 PM (GMT -6)   
Matt. so sorry you're not doing well.  Have you thought about asking your doctor about IV's for nutrition?  It might give your gut a break and help cut down on the inflammation. 
Maybe try rice, applesauce, coconut milk and blueberries and ground chicken or turkey.  I can't take the protein drinks because they're so concentrated they go right through me.  Hope things get better- I've been in a flare up for 6 months and it's terrible.  Going for 2 more opinions and am changing my diet.

Rio in Maryland
Veteran Member


Date Joined Nov 2007
Total Posts : 891
   Posted 8/6/2009 6:32 PM (GMT -6)   
I agree with what some of the other have said about eating soft, easily digestible foods like rice and applesauce. Also, boiled eggs should give some good protein. Make sure you're drinking a lot of fluids too. Juicing vegetables helped me get some necessary vitamins when I was in a severe flare. I juiced spinach and carrots.

I don't think protein shakes are a good idea as they often have a lot of sugar, artificial flavoring, and other unhealthy ingredients like carrageenan.
Rio, 33 year old male. Diagnosed with UC in 2006
Azathioprine (stopped), 4800 mg Asacol
VSL#3, Metamucil
Vitamin E enema or Canasa/Mesacol suppository occasionally


JLG45
Regular Member


Date Joined Feb 2009
Total Posts : 114
   Posted 8/6/2009 6:34 PM (GMT -6)   
I had similar issues when after a 3 week stint in the hospital in March. Your hemoglobin may be low from all the blood loss therefore causing weakness. Check with your GI, they may want to give you iron supplements to help raise those level incase you flare again. I was very, very fatigued awhile back immediately after a flare and that was the problem.

For the first 3-4 weeks after the hospital I had night sweat throughout the evening.

My guess is your feeling jittery because of the Pred and steriods you may have received in the hospital.
Diagnosed U.Proctitis 07

Flare Feb 09 - Diagnosed with Severe Pancolitis
Remicade, 50mg Prednisone, Cortenema PM, 1g 5 ASA suppository AM


Hopeful4uc
Regular Member


Date Joined Jun 2009
Total Posts : 90
   Posted 8/6/2009 6:45 PM (GMT -6)   
MattUC --
I am too on Remicade, just had my third infusion yesterday.  Give it time and it should work, hopefully soon for you.  I have pancolitis UC, much bleeding, and the Remicade starting working slowly almost within 7 to 10 days, but you need to give it time.  The prednisone should help as well.  Just resting helps, eat very bland foods, low residue diet should help ease the pain while you are in your flare. 
A multi-vitamin would be good when you are not having so much diarrhea, push the liquids, ask the MD for some advise on how to regain your strength.  I too was very weak, but now on Remicade it's getting much better, but I just have trouble sleeping....I think I'm hitting the menopausal stage of my life, like I need that right now. rolleyes
I wish you luck in getting better very, very fast. :-)

sirenshooter
Veteran Member


Date Joined Jun 2009
Total Posts : 2011
   Posted 8/6/2009 7:52 PM (GMT -6)   
Rice, noodles, and mashed potatoes always did me good.

As for the protein thing, I s'pose it depends on the person. *shrugs*
19yr old female diagnosed with UC (pancolitis) in 2005 at age 15
125mg Azathioprine 1xday / 1 Mesalamine enema every night /
2000mg Fish Oil 1xday / 500mg Turmeric 3xday /
450mg Boswellia 1xday / 400IU Vitamin E 1xday
Arthritis in both knees
Also: asthma, acid reflux, and Reynaud's Syndrome


MattwUC
New Member


Date Joined Aug 2009
Total Posts : 8
   Posted 8/6/2009 8:12 PM (GMT -6)   
it is so nice to be able to talk someone about this. Although it is hard to describe in words how you actually feel physically and mentally. Staying positive is the most important part I guess. It is hard when your 25, have the whole summer while your friends are out doing what you would do on a regular basis. All I care about now is getting back to work for the 17th of August. Cannot wait until I have the confidence to leave the house without fear of looking for the next rest stop. UC is never good for a relationship either. Again I thank all of you for keeping in contact, it means the world to me. Hopefully once I am better I can go another 4 years without any worries

MattwUC
New Member


Date Joined Aug 2009
Total Posts : 8
   Posted 8/7/2009 12:15 PM (GMT -6)   
Can anyone take the time to write a short grocery list for me...I am stumped on what to eat.... and you never really know what actually causes the pains in the stomach....last night was rough.... a burning sensation and really bloated but couldnt go to the bathroom... woke up soaked.... and my heart beat is driving me crazy

PinkBible
Regular Member


Date Joined Jul 2009
Total Posts : 37
   Posted 8/7/2009 11:00 PM (GMT -6)   
I'm so sorry you're stuck feeling like you are. I'm on 40mg of prednisone and lately I get really shaky. My hands tremble. Its starting to affect my quality of sleep too I think. Good luck!

CaptPoopyPants
Regular Member


Date Joined Aug 2009
Total Posts : 42
   Posted 8/8/2009 9:31 AM (GMT -6)   
ElephantPipe said...
There is a protein drink made by Bolthouse Farms that is mocha cappucino flavored and it is amazing. I haven't tried it to regain strength, but because of the protein and vitamins I imagine it would be good. So you get your coffee taste without the bowel-irritating caffiene =)


That Bolthouse Farms mocha cappucino protein drink does contain caffeine - 60mg per 8oz serving. Also contains dairy. Contains whey protein (certain types of whey protein will tax the digestive system).

I would not recommend this product for UC sufferers. nono

sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 8/8/2009 2:38 PM (GMT -6)   
when i was on 40mg of prednisone for a couple months my heart beat would be so rapid it would drive me up the wall... and i wouldn't even do anything to make it get that fast...i'd also have the sweats.
Kara, 22F Married. 
Previously- Lialda 2 twice a day. Left Sided Colitis 40cm up...flare. Also IBS.
Latest: Had first Remicade infusion on 07/30/09, next scheduled for 08/13/09. Doc. talking about lowering Lialda to 2 a day or off completely. Formed stools...usually 1 or 2 a day :D
Medications: Lialda 2 twice a day, Remicade, Protonix.
I am so sick of this disease!
 
 


MattwUC
New Member


Date Joined Aug 2009
Total Posts : 8
   Posted 8/8/2009 3:06 PM (GMT -6)   
today i actually feel alot better...slept last night without waking up soaked... only woke up to go to the bathroom once in the middle of the night and there wasnt as much stomach pain. I have lost alot of weight just gotta try to gain it back without over eating ....I dont eat to much because I am so sick of the horrible pains. Each day is better than the next ...

sirenshooter
Veteran Member


Date Joined Jun 2009
Total Posts : 2011
   Posted 8/8/2009 6:43 PM (GMT -6)   
CaptPoopyPants, sorry, didn't know. I'm in a mild flare and drink it without problems (unlike when I drink coffee) so I assumed it didn't.
19yr old female diagnosed with UC (pancolitis) in 2005 at age 15
125mg Azathioprine 1xday / 1 Mesalamine enema every night /
2000mg Fish Oil 1xday / 500mg Turmeric 3xday /
450mg Boswellia 1xday / 400IU Vitamin E 1xday
Arthritis in both knees
Also: asthma, acid reflux, and Reynaud's Syndrome


julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 8/9/2009 6:02 PM (GMT -6)   
Hi Matt,
I hope you are continuing to feel a little better each day. Some ideas about foods to regain the weight you lost...
keep in mind that everyone is different so these might not appeal to you but these are some things I eat:

Toast with peanut butter (Peanut butter is high in fat and protein)
Quinoa (Pronounced: Keen-wah. It's like rice only better, nutritionally. you can find explanation of how to cook it if you google it)
Avocado -- I have to be feeling pretty well for this, but avocado is high in the healthy kind of fat. Good for gaining weight.
Dark meat chicken - don't know why but it appeals more than white meat as something easy to eat
Sweet potatoes
Chicken soup

Hang in there.
-------
UC for the last ten years
Current Meds: 6MP since 2006, Lialda, Asacol foam, Lomotil
Past Meds: You name it; I've tried it. (Asacol, Colazol, Pentasa, DiPentum, Rowasa, Canasa, Cortenema, sulfasalazine, Cortifoam)
Alternative treatments I have had success with: Acupuncture, Hypnotherapy


MattwUC
New Member


Date Joined Aug 2009
Total Posts : 8
   Posted 8/10/2009 12:52 PM (GMT -6)   
Thanks Julee,
Like I said everyday seems to be a little bit better. I can go all day now being fine, it is mostly in the middle of the night that I end up in the washroom. The stomach cramps have basically been pretty limited and only find some bloating now. Maybe remidcade is the miracle drug. I cannot wait to get off prednisone though it messes with my emotions lol. Yesterday I finally had the confidence to go out to the beach and order some food. I ordered fish and when it came to me it was uncooked and rubbery and I completely lost it. I am a relatively calm person usually and never complain. I am wondering if the medication is making me testy.

julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 8/11/2009 6:03 AM (GMT -6)   
I don't know if it's the medication, but certainly feeling like **** can make one testy. I mean, really, this is how I would have thought about it: I get my sorry butt to the beach finally and instead of french fries (which I want to eat) I order the healthy thing and you give me this junk?

Yes, that would make me testy too.

When I'm in a flare, it's such a big deal just to leave the house that I have no patience for when something messes it up. Perhaps it's that kind of feeling and not the meds? Just an idea.

Still, after you yell at someone for lousy fish, it's probably better to tell them it's the meds talking. :)
-------
UC for the last ten years
Current Meds: 6MP since 2006, Lialda, Asacol foam, Lomotil
Past Meds: You name it; I've tried it. (Asacol, Colazol, Pentasa, DiPentum, Rowasa, Canasa, Cortenema, sulfasalazine, Cortifoam)
Alternative treatments I have had success with: Acupuncture, Hypnotherapy


Nor_TX
Regular Member


Date Joined Nov 2008
Total Posts : 360
   Posted 8/11/2009 1:42 PM (GMT -6)   
Matt.. When I am at my worse... I pick up some baby food - stage 2.  The fruits and vegetables are excellent, very easy to digest, lots of nutrients and totally approved by my GI.  I especially like the peaches, fruits and sweet potatoes.  There is even some corn that is totally smooth but tastes just like creamed corn.  I existed on baby food for months at one point during the winter. There is no added sugars so it is very easy on the gut.  Good Luck.

Presently on: 600 mg. Remicade every 4 weeks
                   Venofer infusion every 4 weeks
                   B12 every 4 weeks              
                   15 mg. Methotrexate/injection weekly
                   12 Asacol daily
                   10 mg. Celexa daily
                   Zofran as needed

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