Fresh Out Of The Hospital, No Strength

that's me on the right!

that’s me on the right!

Introduction:

I am 20 years old and was just diagnosed this year. I spent 2 weeks in a hospital, got out then spent another 3 weeks in another hospital. I am 118 pounds of bone and skin at the moment.

Some more about me:

I am from Illinois, I enjoy reading, walking, cooking, and eating.

Fresh Out of the Hospital, No Strength

Hello all, first I wanted to say that this website was a great help to me when I was in the hospital, but because of my lack of computer I wasn’t able to do much more then look around and read as much as I could in an effort to understand just what Ulcerative Colitis is. So thank you Adam for making this incredible site.

I was just diagnosed with moderate/severe left-sided colitis this past year, July actually. It was a shock because up until that point I was a healthy person. Or so I thought. Looking back now I can see all the times where I wasn’t healthy and I’m able to match these up with symptoms of UC. I am taking Remicade, which seems to be working well for me. I am also taking prednisone, iron supplements, and omepazole. As I just got out of the hospital I’m on a low-res diet, which is also gluten-free because I suspect that I have celiac disease.

My question is now that I’m out of the hospital I have no muscle. I’m incredibly weak (getting stronger by the day but still weak) and as an independent person this frustrates me. I know many of you have been through the same thing, coming back from long hospital stays, and was wondering if any of you can offer any advice. What light exercises can I do to build some muscle back? I don’t need to gain any weight as that will come from the muscle I just need to build that muscle. Also what are some good snaking foods? Because the prednisone is making me hungry but we really don’t have any good snake foods that I can eat. We have sweet potato chips and pudding and jello but I want more options that won’t send me into a flare or bloat my stomach like gluten seems to do.

Thank you all in advance for any and all responses.

written by Amy A




Ulcerative Colitis Tips


The FREE iHaveUC eBook "Ulcerative Colitis Tips" is made available to all members of the 15,000 person newsletter group INSTANTLY. It is several pages of tips gathered from other people living with Ulcerative Colitis, and has ideas which can be put into action immediately. You will need to enter your email, and confirm the email address afterwards.

24 Responses to Fresh Out Of The Hospital, No Strength

  1. Adam
    Adam September 27, 2013 at 4:45 am #

    Hi Amy, thanks for sharing your story and I’m super happy you’re enjoying and making use of the site.

    As for gaining back strength and muscle, I can remember very clearly being in that same situation. I never went through a long hospital stay, but I was confined to my bed for over a month several years ago so I know what it’s like.

    And holy crap, I could barely lift a 5 pound bag of potatoes without tearing some ligaments/tendenons or whatever is in there. Picking up a suitcase or even getting a bag of groceries in the back of the car was almost impossible. (Thanks again to my wife Michaela for hooking me up so so many times with basic crap like that)

    Anyways, things did get better, and yes my strength has come back. I can do the normal stuff again like put bikes on a bike rack on the car, pick up BBQ grill propane tanks etc… and even lift 50 pound bags of chicken feed.

    BUT, IT DID TAKE LOTS OF TIME. Several months to be exact, and I made some mistakes on the way. I was always used to my body bouncing right back (like in a day or two right). Well, getting strength back after being shut down with nasty colitis for so long take a bit more time, and we all have to be PATIENT.

    Just doing simple walks around the neighborhood was perfect excercise for me. It got the leg and arm muscles moving again nicely. As far as weight training, I never did any of that.(Leave that to mr Blake: hopefully you’ve read about his stories and success:))

    But seriously, just doing normal things like going shoping, picking up drink containers, sitting down, getting up, brushing your teeth, and everything else that normal life has to offer seemed to be enough for me to get the strength back again. I just can’t stress enough how important it was not to overdue the comeback party. And not to start lifting things too heavy. I got messed up pretty good with trying to take a suitcase out of a car for someone I was dropping off at an airport and that set me back a few weeks in recovery for sure.

    I wish you the best Amy,

    -Adam

    • Amy A
      Amy A September 27, 2013 at 8:15 am #

      Thanks for the quick reply. Patience is not one of my virtues so that’s something that’s going to be hard for me, but I see where you’re coming from. I know that I need to take it slow, I just got out a week ago after all, but I just want to do so much. The scare of going into the hospital and all the talk of surgery (I have severe colitis, lucky me) really woke me up.
      I’m walking everyday, with my dad just in case, and I’m changing my whole diet around. Fall and winter are a great time to recover though, there’s not as much pressure to get out and do something so I can relax and heal.
      I’m going back into work in a few weeks, I’m going to the grocery store, I’m living my life as normally as possible. I believe that in recovery attitude and your emotional health count for at least 50% so I’m trying to stay positive.
      Thank you again for this website as it’s helping me stay positive with all the wonderful stories and all the amazing people.

      • Adam
        Adam September 28, 2013 at 4:57 am #

        Hang in there Amy, I think you’ve got the right idea. Best to you and your family,
        -Adam

  2. Juliet
    Juliet September 27, 2013 at 4:48 am #

    Good day to you Amy!

    Your story has so many similarities with mine and many others!

    Please don’t eat chips, pudding cups and even jello. Watch out for sugar especially when on prednisone. And do not rush to do do any strenuous exercise. You’re just out of hospital and your body is using all of its energy to heal and repair. Maybe try some yoga or Pilates which do strengthen your muscles as well as de-stress you.

    As far as diet is concerned, lots of good quality protein will help your body and its good for controlling appetite. Diet is a tricky one as what works for some may not work for other people. But avoiding wheat/gluten and most grains seems to help with UC. Most other foods are really trial and error. Of course doctors are not very helpful in that area.

    • Amy A
      Amy A September 27, 2013 at 8:23 am #

      Hi Juliet,
      Thanks for the reply I had no idea that the pudding and jello could be dangerous. Jello was one of the things they kept pushing on me in the hospital, makes you wonder how much these nurses and doctors know about whats really best for people with colitis/crohns. I’ve been doing light yoga every few day, as even that tires me out, and I’ve been walking everyday. I don’t eat gluten anymore as I noticed it made me gassy and bloated, which never happened before I was diagnosed. I am resting as much as I can, but I just can’t sit still anymore, being stuck in a hospital bed for three weeks ruined that for me haha.
      Anyway, thank you for the advice, I’m going to be extra careful when reading food labels from now one, make sure there’s no extra sugars or ingredients that I can’t pronounce.

  3. KimberlyHI
    Kimberly September 27, 2013 at 11:06 am #

    Hi Amy!! I remember coming out of the hospital about a year ago and my quads were completely gone. I was sooo sad. Because I like jogging almost every day and I was just no muscle at all, just bones, I could barely walk to the mail box. So I think most UCer’s have been through the same thing, and it just takes time to build yourself back up. I started with short walks until I felt good enough to go longer, then I added hills, then went to short jogs with walking, then gradually was able to get back up to my jogging again, and have my quads and calves back! It took maybe 6 months to get to almost normal again. Yoga and very light strength training is good too, using light weights.
    I am on remicade too and it helped me get better and got me back in shape, because I finally was not flaring and had the energy to exercise.
    As for snacks, if you can tolerate, maybe peeled apples…avocados…chicken…things like that. Definately would skip high fat foods and high fiber, and most UCer’s have to skip dairy too but it differs for each of us. Good luck in your recovery, things will be better in no time.

    • Amy A
      Amy A September 27, 2013 at 11:49 am #

      Hi Kimberly,
      Thanks for the reply :) people on this site are so friendly and helpful. I’ve been going on short walks outside and also going out almost everyday to either the store or the apple orchard that my family owns. I think the hardest part is the wait because we’re so use to being able to do things we considered ‘normal’ and suddenly we can’t do them anymore haha. I like that I’m getting time frames of recovery, that’ll help keep me in check I hope, I don’t want to push myself to hard to fast but after laying in a hospital bed for three weeks the last thing I want to do I take it easy haha. Thanks for the snack ideas, I love apples but was told by the hospital nutritionist that I shouldn’t eat them anymore. I’ll try a slice peeled and see how that goes.
      Thank you again :)

      • KimberlyHI
        Kimberly September 28, 2013 at 12:23 pm #

        This site is wonderful. I was diagnosed 12 years ago but just found this site last year. Until I found this site I only knew what doctors and other websites said, I did not know much about diets or natural remedies. It’s great to be able to see others stories who understand your situation and learn from them, and be able to talk to them and know they understand.
        You will find that you will get tons of advice about diet and it will contradict what others have said ha ha! It’s very confusing. What the doctors say will be just about the opposite of what SCD and GAPS diets say. The truth is, all UCer’s are different, there is no magical diet that works for everyone unfortunately :( And even after all these years I still don’t know what to eat! Especially because the medications sometimes able you to eat what you normally can’t handle, at least for a little while, and I have always been on meds. I know a couple of my triggers but it is very difficult to pinpoint everything. So, you just try things and find what works for you. Hope you are feeling better!

        • Amy A
          Amy A September 28, 2013 at 1:55 pm #

          It really is great, such a wonderful and supportive community of people who just wan to help and be helped.
          Learning my triggers seems to be a major part of my life right now, it’s a constant game of “ok something I ate today didn’t agree with me. Now who’s the culprit?” Frustrating and exhausting, but I know it’ll get better as I learn more about my body and my disease.
          Right now I’m just trying to stay as positive as possible, I hate worrying my family and they always ask how I’m doing and I never know how to respond. Right now the paleo diet (or what I can do of it) seems to be working. It helps that I was already thinking of going on the paleo diet before my first trip to the hospital so I already knew what to expect coming out.
          I hope you are well,
          Amy A.

  4. Sharon September 27, 2013 at 11:12 am #

    Some of my recovery snacks are cantaloupe, ripe bananas, boiled shrimp, pumpkin pancakes (you can eliminate the flour and substitute almond flour when you heal a little more), avocado with a little lime and salt and bagel chips, butternut squash soup,apple sauce, and smoothies. If you cant tolerate dairy you can use almond or rice milk with bananas, peanut butter, protein powder, and yogurt.

    Your muscles have great memory but they are depleted right now. Your strength comes back naturally, like Adam said, as you do normal daily things. At some point, you will get more energy and your body will let you know your ready to take on more. I agree with Adam though that pushing yourself too early is not in your best interest. As you learn to live with this disease, you will learn to read your own body’s signals. Learn to identify when you are stressed and intentionally take steps to reduce that stress. Know your food triggers if you have them (when I am in remission I do not have any food triggers but some people do). When you need rest, take it. Sometimes, the best way to build your strength, is to allow for extra recovery time.

    I was diagnosed at 19 and am now 43. I have led a super awesome life with my husband and 4 kids. UC is not your identity, it is just another piece of your puzzle.

    • Amy A
      Amy A September 27, 2013 at 11:56 am #

      Hi Sharon,
      I’m hoping to live as normal a life as I can so one day I can say ‘I’ve had this disease for 30 years and it did not control how I lived my life’. I just need to get to remission first. Those snacks sound awesome and I will definitely be trying them when the prednisone makes me super hungry (it seems to depend on the day? lol Medication is so weird). i’m already starting to read my body signals, ironically enough it took getting really sick to understand my body and what it’s been telling me. Thank you for the advice, it’s nice to be able to see (for lack of better word) someone who has lived with this disease most of their life still have had a fulfilling life.
      Amy A.

  5. Caroline
    Caroline September 27, 2013 at 2:39 pm #

    Amy,

    I sure hope you get to feeling better soon! I am so glad you found the site – it has been a lifesaver for me, too. I was just diagnosed in January and it helps so much to have a community of people that support you and understand!

    I went through a 2 month bout with Prednisone, and almost overnight what was left of my muscles disappeared. Besides the fact that you probably aren’t absorbing nutrients very well, Prednisone can also cause muscle wasting. It definitely did for me – but the muscle will come back. Remember that healing your gut takes time – my naturopath gave me terrific advice when I was pushing to get back to the gym and do weights. He told me that my body could only do one major thing at a time, and all of it’s energy needed to go to healing my gut, not building muscle.

    Take the time to see what foods work for you – proteins are great, as well as heavily cooked peeled veggies. Chicken soup (no noodles!) always sounds good when I don’t feel well, even now being in remission. Bananas are also pretty magical for me too! Check out some of the diet stories on the site – a lot of us have found success with SCD, GAPS, and Paleo.

    Take care, rest up, and feel better soon!
    Caroline

    • Amy A
      Amy A September 28, 2013 at 1:21 pm #

      Hello Caroline :)
      Yeah I’m trying the paleo diet, or a variation of one as I’m still not in remission yet. I’m trying to take it slow but it’s hard haha.
      I’ve been on prednisone since… July 27th I believe was my first dose and am very anxious to get off of it. Of course the docs fear that the prednisone is the only thing keeping me in my partial remission so I also don’t wan to be off them, it’s very confusing right now.
      I’m taking walks and doing light exercise like grocery shopping and cleaning the house and doing laundry, (haha those count as exercise right?) as well as a lot of cooking. I love chicken soup but keep running into the problem of high sodium or other unhealthy ingredients, guess that means I should just make my own lol.
      Thank you for the well wishes and I hope you stay well :)
      Amy A.

      • Caroline
        Caroline September 28, 2013 at 4:38 pm #

        Amy,

        Ahhh…..I hear you. It’s not an easy transition, but it is worth it if it works. Getting up and out is HUGE – good for you! Even if it’s something “small” like going to the store, it’s something. I am not huge on meds (as long as I can avoid them) but the prednisone for me was crucial to jump start things. Even with all the side effects – it was well worth it. Getting started with Paleo takes a lot and it can be overwhelming – I was somewhat lucky in that I had started working with a Paleo nutrition counselor just a few months before my first flare. So giving up all the grains/dairy/sugar/etc was not a huge stretch. I was 80/20 Paleo prior to my flare, so going 100% was not a horrible jump from there. I will tell you that planning helps so much – I make batches of food in the crock pot to have handy for meals during the week. Now that it’s a routine it’s not a big deal, but getting there is the tough part. Let me know if you need help!

        As for chicken soup – you can make your own and it’s so easy and amazing! I get rotisserie chickens, and save the bones. Put the bones in a crock pot, with cut up onions, carrots, and celery, plus a couple of teaspoons of Apple Cider Vinegar. I add salt and pepper, and cover it with water- cook on low for 24 hours (adding more water if necessary). It’s AMAZING and so healing for your gut. I started to crave it – and you can really use any kind of bones, so save whatever you cook for it. :)

        Hang in there and take it one day at a time. :)
        CK

        • Amy A
          Amy A September 29, 2013 at 7:46 am #

          It’s so great to find someone else with uc that’s on the paleo diet. How long after your flare did you fully transition? I’m a bit wary of going to fast into it and undoing all the hard work my body’s done to heal itself.
          Also, because of the fact that most nuts and seeds are bad for people with IBDs how did you replace them, if you replaced them at all.
          That chicken soup sounds amazing, we just made pulled pork in the crock pot and saved the bone so I’ll have to make some this week.
          I’m trying to take it slow and go easy on changing everything up as I don’t want to send my body into shock or anything.
          If I have anymore questions regarding the paleo diet I’ll be sure to ask if that’s ok.
          Much thanks,
          Amy A.

          • Sharon September 29, 2013 at 10:55 am #

            I started the GAPS diet about 2 weeks ago. It is similar to Paleo in some ways but definitely a lot of bone broth soups. I downloaded an ebook that has step by step recipes for the first 30 days on GAPS. I had been on 60mg, the 40mg of Prednisone for 6 weeks with no change in symptoms. Within a few days on the diet, I went from 20-25 bms/day to about 12 and yesterday was only 5. I also take Uceris, iron, L-glutemide, probiotics. For me, this diet has changed the game.

  6. Sheila September 27, 2013 at 2:42 pm #

    Hello Amy,
    I, too, had to build strength back from almost zero. It’s a process of finding a balance – doing as much as you can without overdoing it. You’ll find your limit and it will expand. You have to try every day, but don’t be hard on yourself if you get tired! Best to you.
    Sheila

    • Amy A
      Amy A September 28, 2013 at 1:25 pm #

      Hi Sheila,
      It’s been difficult but with all this advice and tips I’ve been getting, as well as the support from my family and the people on this site, I’ve been working my way back up. Sometimes the slow processes are the one worth more, because the journey is just as important as the results. I’m not only getting stronger physically but mentally and emotionally as well. As much as I hate having a chronic illness I wouldn’t trade it for the world, because it allowed me to grow as a person.
      Thank you for the reply, and I hope life is treating you well,
      Amy A.

  7. Allison September 27, 2013 at 2:54 pm #

    Hi Amy!
    I’m also from Illinois, was diagnosed when I was 20 (2 years ago) and was released from the hospital at around the same weight of nothing but skin and bones. Instead of letting it get me too down (which I can’t say was successful, high dose prednisone didn’t help my mood and self esteem) I tried to see it as an opportunity to “rebuild” myself.
    I started with walks around the neighborhood with my family- walking a little bit further each time. When I was comfortable I started using the elliptical or treadmill to add incline or resistance. I also started weight lifting- and I don’t mean super intense, pumping iron lifting. Really simple exercises with light weights. Women’s health has some great resources- I bought their “big book of exercises”, as well as hundreds of different exercises organized by muscle, in the back they actually have a “get your body back” workout plan that’s a multiple week plan geared to people who are trying to get back in shape. It was really good for keeping me on track, and if you find you can’t do an exercise you flip to it’s section in the book and can find a simpler modification.
    Most importantly though- it’s okay to challenge yourself to improve, but don’t push yourself. It really really sucks being so weak and helpless (I remember being out of breath just going up half a flight of stairs) but it’s something you just have to accept.
    I found though that exercise really helps my mood, and even my symptoms (if I don’t exercise one day I will almost always wake up feeling sicker the next), it also helps keep some of my prednisone/drug induced muscle aches and pains at bay.

    Snack advice: Bananas (which are really important to eat if you’re on prednisone!) and peanut butter. Sometimes I’ll just sit down on the couch with a banana, jar of peanut butter, and a knife and scoop the PB onto the banana and take a bite. Cheese and crackers are good too. Pudding is good, just watch the sugar. Also yogurt with jam or honey or fruit in it. I make smoothies as well-frozen fruit, milk, yogurt, etc. Try making banana bread, muffins, etc as well.
    If you do end up “baking” snacks (which I would recommend, I always have breads and muffins on hand) try looking up some SCD recipes for them. I’m not going to preach the diet or anything, especially not for you right now because you need to gain some weight, but try looking up some of the snacks or breads it offers because I did notice I had less problems with nausea or feeling sick after eating once I switched. If you have a pinterest it’s easy to find recipes, just search “SCD…” and whatever you’re looking for. There’s a LOT on there.

    Good luck and I hope you feel better :)

    • Amy A
      Amy A September 28, 2013 at 1:36 pm #

      Hi Allison,
      It’s nice to connect with people my own age that understand what i’m going through (not that I’m glad you have uc/crohns of course) because while they try, my friends don’t really understand.
      I’ve been eating a ton of bananas haha, like six a week sometimes more, which is odd because I never liked bananas before. I’m trying the paleo diet which is high in proteins and doing as much walking as I physically can. I’m ready to kick this disease in the butt, but my body is still a bit behind on the update.
      When I first got home I trying going up the one step to get to our walkway and fell over into our chive garden. My pride was hurt more then anything but thats when it really hit me how weak I was. Now I can get up the stairs as long as I have a death grip on the railing, so progress lol.
      I’m starting to get into juicing, just to get some nutrients into my diet and found this really cool website for it
      http://juicerecipes.com/health/conditions/juicing-for-ulcerative-colitis/
      Anyway, I hope life treats you well,
      Amy A.

  8. Rainy September 27, 2013 at 4:11 pm #

    Hi Amy,
    It seems like not 5 minutes ago that I was in a similar situation to yourself.
    I was diagnosed with UC in Jan 2012 yet had my first flare Sept 2011, It was pretty awful as I was left to cope with all the symptoms without the intervention of medication because my doctor would not prescribe me anything until I had a confirmed diagnosis, I couldn’t get a diagnosis until December 2011 as that was the earliest appointment. Luckily the flare cleared up by itself. My second flare happened in January 2012 which was moderate, and with suppositaries and enemas, it soon cleared. Then November of last year (from out of nowhere) My 3rd flare appeared. The worst I’ve had so far! I was admitted into hospital for 8 days, put straight on IV steriods, also given Asacol, given all sorts of vitamin pills, was having needles poked into my stumach to prevent blood clots, was put on a potassium drip. The first night of being on the steriods, I could NOT sleep & my hip bones sounded like they were crumbling, over the next few days, my feet, hands and knees had swollen, to the point where I struggled to get out of bed. I was completely bed bound. On the 8th day (day of my release) I was complete skin and bone, my clothes hung off me me, my hips had disapeared, the muscle from my legs had wasted away, my colar bones were protuding & my face was gaunt. I can remember looking in the mirror crying, thinking ‘what the hell has happened to me’ I looked like I was dying. I was taken home via ambulance with a huge bag of meds, I was too weak to take any other form of transport.
    To cut a long story short, I hated the way I looked, I wanted my muscle back, I refused to leave the house as I thought people would be looking at me or making comments out of ear shot. The prednisone had massively increased my appetite, yet I wasn’t gaining any weight. Over the next few months, I did gain weight but No MUSCLE, I was told that it would be difficult to gain muscle whilst on prednisone. I came off the steriods in March and decided to join a gym to gently try and build muscle up, over the next few months, the muscle has now appeared back, which I am so grateful for. What you need to do when you feel strong enough is exactly what Adam recommended and try to go for short brisk walks, it probably won’t increase any muscle but it will make your body feel stronger. I don’t know whether you are currently on steriods and how long for but as soon as you wean off them try doing some light weights and you will get your body back TRUST ME! It takes time to recover from a bad flare. In total it took me 8 months, I was at breaking point, so many times I wanted to just give up as I couldn’t see any improvement but I held on in there and I’m feeling so much better and you will too. If you would like to have a chat I can give you my email address. You will get through it x

    • Amy A
      Amy A September 28, 2013 at 1:44 pm #

      Hi Rainy,
      I’m glad you’re feeling better. I’m pretty sure I had a flare up when I was fourteen but went diagnosed until july of this year. I’ve been on prednisone since July 27ish and am slowly being weened off them right now. I’m doing light walks and that does seem to be helping. I can get up and down stairs without falling and can get up from a seated position with minimum rocking back and forth to gain momentum lol.
      I think the key is to stay positive, I’ve come to realize that if I let the insecurities and the doubts cloud my mind I’ll never get better. Recovery is much more then physical, it’s emotional and mental too.
      I’ve been thinking about doing light weight training once I get back on my feet and heal up a bit more. I’m still not completely in remission yet so I’m taking it slow, with both the exercise and the diet.
      Thank you for the advice and I wish you the best,
      Amy A.

  9. Kim September 27, 2013 at 6:28 pm #

    Hi Amy! My story is also similar to yours. I remember being SO frustrated that my almost two months in the hospital made me so weak. And I had another issue–I couldn’t go back to work until I could climb a flight of stairs (no elevator.) What worked for me is something you can do even if you’re lying in bed: isometric exercises! They can be done anywhere. You can look up specifics online, but what I did was tense up the muscles in different areas of the body. I wanted me legs to get strong more than anything, so I would tense up the muscles in my calves, them relax. Repeatedly. Same with my thighs. Then on to my arms, etc. These exercises allowed me to work on my muscles without completely wearing myself out. :) As far as the snacks, I’d say just try to figure out what works for you. Everyone is a bit different. Sugar is something I absolutely can’t handle, even when my gut is more “normal.” But there are other things I can tolerate that others usually can’t. Take it slowly and see how your body reacts to certain things. I started juicing and actually went on a juice fast during my last flare, which helped tremendously–I just had to avoid the juice of some leafy greens due to oxalic acid, which can irritate the gut. Replaced it with bok choy! No matter what you do, don’t ever give up. It’s a slow process, coming back to a more healthy body. You got this!

    • Amy A
      Amy A September 28, 2013 at 1:48 pm #

      Hi Kim,
      I’ve actually just started juicing recently, and I had no idea about the leafy greens, I’ll be sure to avoid those. I found this great website for juicing that offers recipes geared toward people with ulcerative colitis, I’ll link it here for you if you don’t know it yet,
      http://juicerecipes.com/health/conditions/juicing-for-ulcerative-colitis/
      it’s really great.
      Those isometric exercises sound awesome, I’ll start doing them before bed, maybe they’ll help me sleep better.
      Thank you for the reply and I hope your life is treating you well right now,
      Amy A.

Leave a Reply