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Crohn's Disease Forum » Your Story » Feeling out of my skin...is it the Prednisone?


07-11-2014, 02:47 PM   #1
JeanBean
 
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Feeling out of my skin

Hello, I am a 35 year old girl living in NH. Here is my story: I was diagnosed with Crohns about a month ago while being hospitalized. The doctors say I've had an active disease for over 10 years and are puzzled over how the heck I was able to go through all the pains and how it went undetected for so many years. My problems go back about 10 years precisely when I started to experience sharp stabbing pains in my stomach from doing just about nothing. This went on for a while (more like months) until the day my father drove me to the hospital He knew something wasn't right. I was running high fevers and my blood pressure was sky rocketing. They did an ultrasound and found that I had gallstones and some sort of infection (or abscess). I was told that I had irreparable damages from the untreated infection so it was better to remove the gallbladder completely. Following the laparoscopic surgery, the surgeon thought it was strange that this would happen without having any prior history and being underweight. I was later refered to a gastro specialist who eventually had me go through several tests including an endoscopy that found high levels of H-Pylori bacteria in the lining of my stomach. During these years of discovery, I experienced episodes of excruciating pain that would send me to the ER. I felt many times as a time bomb and though that I would pass out and die. I've had several upper GI CAT scans and ultrasounds with no findings. Typically during these visits they would find anemia from a CBC result or low potassium levels, high blood pressure and fevers but nothing pointing to the cause. Many times I would be released for UTI's that I knew I didn't have. More recently I decided to find home remedy and avoid the hospital. I managed for some time with a prescription of Hydrocodone. It wasn't until I became pregnant that I started to believe that stomach pain was just the past. Not once during and after my pregnancy did I experience pain. Those were the best two years I've had and wish I could reverse in time. But this happiness was only a tease, right about the time I decided to wean my baby from breastfeeding began the discomforts and crampy-nauseating pains. Not sure why but somehow the change triggered the misery of pain and stomach discomfort once again appearing in my life. The sharper, excruciating pains just reappeared as they were there yesterday. I felt in agony, the pain would linger and continue onto the next day. Finally convinced myself that it had to be serious and made an appointment with my primary Dr who coincidentally had an opening the next day. It was during this appointment when it all started...four weeks ago... I walked in and two hours later I'm admitted to the hospital after getting the results of a lower GI CAT scan (never done before) the same day: finding a mess of tissues, narrowing of the large intestine, fistulas, bowel obstruction and a large abscess that was apparently the main reason why they would not let me drive back home. I was given the combination of Cipro and Flagyl and a colonoscopy was ordered the next day. The surgeon paid me a visit to tell me that surgery was not an option in my case, assuring me that if Remicade was to work I could extend the life of my large intestine. My worries continue since there is so much to think about...the risks of treatment, the active and destructive disease I have living in me, limited options if the treatment is a fail. I've already had an issue the first time we tapered off the Prednisone, this is my second round. I can't concentrate and feeling out of my skin. I have a little boy who is now two...I fear of what's going to happen to me...I want to see him grow.

Last edited by JeanBean; 07-12-2014 at 07:33 AM.
07-12-2014, 11:34 AM   #2
JeanBean
 
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Update: I had my first dose of Remicade last weekend and am going for my next dose next Saturday...just starting to feel a little better but my head is still spinning from all of this.
07-12-2014, 11:45 AM   #3
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*hugs* So scary! When I was originally diagnosed I had a three year old and a two month old, and I nearly died from blood loss. I don't say this to belittle what you're feeling, just so you know that I understand how you're feeling.

I wasn't given Remicade until after I nearly died, and I can tell you I called it the miracle drug. It doesn't work immediately, but it got me off the prednisone, and eventually gave me back some of my life. Cimzia worked better, but it's REALLY expensive and they won't let you take it unless nothing else works (I developed an allergy to Remicade).
07-12-2014, 04:56 PM   #4
Grumbletum
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I really feel for you Jellybean. I think the 'out of your skin' feeling is a combination of the meds and just the whole experience you are going through. Steroids are definitely a big factor and are well know for the feeling of spaced outness they can induce.
But I think it's the whole horrible experience of being ill, and not knowing what's wrong and going through horrible tests and then being hit with a diagnosis that is really life changing. That feeling of things being outwith your control.
Hopefully the meds will kick in soon and help to get you on an even keel again.
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07-13-2014, 03:23 PM   #5
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Mindiemonster, how long where you on the Remicade and when did they realize you were allergic? Also, what were the symptoms?
07-14-2014, 03:10 PM   #6
JeanBean
 
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I really feel for you Jellybean. I think the 'out of your skin' feeling is a combination of the meds and just the whole experience you are going through. Steroids are definitely a big factor and are well know for the feeling of spaced outness they can induce.
But I think it's the whole horrible experience of being ill, and not knowing what's wrong and going through horrible tests and then being hit with a diagnosis that is really life changing. That feeling of things being outwith your control.
Hopefully the meds will kick in soon and help to get you on an even keel again.
Thanks for the support Grumbletum. I am down to three pills this week but want to go down to two tomorrow ...I'm supposed to wait till Friday... wondering what would happen if I change it now? I'm sure the Dr will disagree so I won't bother calling them. My face is swelling up and I'm getting joint pains. What to do? What to do?
07-14-2014, 03:25 PM   #7
valleysangel92
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Hello

I'm so sorry I've missed your post until now, I've been in the hospital myself recently and have gotten a bit behind with everyone..

Looking at your original post it seems like you went to the hospital at just the right time, it's amazing that you managed for so long with this and that things didn't get picked up on sooner.

I know it must all be really scary right now, but now you have a diagnosis they can start to get you better. For many people remicade has been a life saver and lots of people have successfully gone into remission with it. I understand your fears, but it is getting rarer for crohns disease to be deadly, the odds are getting better all the time and there are new treatments and breakthroughs happening all the time.

We are here to try and help you with anything you have questions on and we will always do everything we can to support you.

Regarding your most recent post, please don't drop your steroids quicker than your doctor has recommended. I'm currently tapering steroids too and as I'm lowering my symptoms are starting to come back and this could happen to you too. Increasing the speed of the taper increases the risk of symptoms getting worse. I know the side effects are horrible but please try to stick with it. It might not be the steroids making you feel out of yourself, it could be a direct result of the disease. Being diagnosed with an illness like crohns can have a massive effect emotionally and it takes some time to adjust to it. Hang in there.
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07-14-2014, 06:24 PM   #8
Grumbletum
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Hi again. I would echo what Valleysangel says about not tapering the steroids too fast. Coming down off them can be quite tough. I had horrible joint pain when I tapered and felt really down. But it does pass.
But I think I would phone your doctor or IBD nurse about your face swelling. I take it it's a sudden swelling rather than the gradual development of a 'moon face' that can be caused by the steroids?
07-14-2014, 07:21 PM   #9
mindiemonster
 
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Mindiemonster, how long where you on the Remicade and when did they realize you were allergic? Also, what were the symptoms?
I was on Remicade for years. At least five. I began to develop hives during my infusions, which is treatable by shots of benadryl but usually means that pretty soon you are going to have to stop taking Remicade - so they started looking for another option.

If you meant the symptoms of Remicade, I had tiredness the day of and the day after my infusions. I got sick easier than before (which is still not a lot - even on auto-immune suppressants I still have a better immune system than the average person) and when I do get sick it takes FOREVER to get better. I have slower healing time - when I had to get stitches in my hand it took me nearly three weeks to heal.
07-15-2014, 11:35 AM   #10
JeanBean
 
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Hello

I'm so sorry I've missed your post until now, I've been in the hospital myself recently and have gotten a bit behind with everyone..

Looking at your original post it seems like you went to the hospital at just the right time, it's amazing that you managed for so long with this and that things didn't get picked up on sooner.

I know it must all be really scary right now, but now you have a diagnosis they can start to get you better. For many people remicade has been a life saver and lots of people have successfully gone into remission with it. I understand your fears, but it is getting rarer for crohns disease to be deadly, the odds are getting better all the time and there are new treatments and breakthroughs happening all the time.

We are here to try and help you with anything you have questions on and we will always do everything we can to support you.

Regarding your most recent post, please don't drop your steroids quicker than your doctor has recommended. I'm currently tapering steroids too and as I'm lowering my symptoms are starting to come back and this could happen to you too. Increasing the speed of the taper increases the risk of symptoms getting worse. I know the side effects are horrible but please try to stick with it. It might not be the steroids making you feel out of yourself, it could be a direct result of the disease. Being diagnosed with an illness like crohns can have a massive effect emotionally and it takes some time to adjust to it. Hang in there.
Thank you valleysangel92, I am looking forward to this Friday as I go down one more pill. I am convinced its the Prednisone that has me feeling like this and other symptoms. Last night I had another flare up although I am on both the steroids and Remicade. This last episode was extreme it kept me up for a couple hours. My stomach felt as if it was twisting and turning causing me to feel nauseous. I am still a little this morning but I'm forced to eat because I can't take the steroids on an empty stomach...not really having a good day today.
07-15-2014, 11:38 AM   #11
JeanBean
 
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Hi again. I would echo what Valleysangel says about not tapering the steroids too fast. Coming down off them can be quite tough. I had horrible joint pain when I tapered and felt really down. But it does pass.
But I think I would phone your doctor or IBD nurse about your face swelling. I take it it's a sudden swelling rather than the gradual development of a 'moon face' that can be caused by the steroids?
My husband thinks its the 'moon face' swelling but I feel it more. I have a Dr's appointment coming up next week so hopefully it doesn't get worse by then.
07-15-2014, 11:39 AM   #12
valleysangel92
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I've just had my taper slowed to protect me from worsening disease, I know it's tough, I know steroids are horrible, but untreated crohns is even less fun. The fact you're still feeling so rough shows how nasty this disease is. I'm not saying that to scare you, I just want you to know that the effects of the steroids are worth it if they help to get things under control.. What kind of gap do you have between your remicade? Are you on anything for your symptoms?


It's normal for us to see/feel the swelling more than family or friends do, I mean it's our bodies after all. Try not to worry to much about it, if your tongue, lips or throat swell then it's time to go to the hospital, but some facial puffiness and swelling is totally normal.
07-15-2014, 11:50 AM   #13
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I was on Remicade for years. At least five. I began to develop hives during my infusions, which is treatable by shots of benadryl but usually means that pretty soon you are going to have to stop taking Remicade - so they started looking for another option.

If you meant the symptoms of Remicade, I had tiredness the day of and the day after my infusions. I got sick easier than before (which is still not a lot - even on auto-immune suppressants I still have a better immune system than the average person) and when I do get sick it takes FOREVER to get better. I have slower healing time - when I had to get stitches in my hand it took me nearly three weeks to heal.
Hmm...I wonder if the tiredness was due to the malabsorption of nutrients. I am anemic and can be very tired from that alone. When I got the first dose of Remicade last week I felt extremely tired too...it is weird.
07-15-2014, 11:58 AM   #14
JeanBean
 
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I've just had my taper slowed to protect me from worsening disease, I know it's tough, I know steroids are horrible, but untreated crohns is even less fun. The fact you're still feeling so rough shows how nasty this disease is. I'm not saying that to scare you, I just want you to know that the effects of the steroids are worth it if they help to get things under control.. What kind of gap do you have between your remicade? Are you on anything for your symptoms?


It's normal for us to see/feel the swelling more than family or friends do, I mean it's our bodies after all. Try not to worry to much about it, if your tongue, lips or throat swell then it's time to go to the hospital, but some facial puffiness and swelling is totally normal.
Its two weeks, then four and then six. My second dose is coming up this Saturday. As for the pain management, my GI Dr says she doesn't treat pain so I have been twisting in agony at home to avoid the ER. I rather go through the torture at home that than sit in the waiting room for hours while the pain dwindles down there.
07-15-2014, 12:22 PM   #15
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JeanBean - I am stunned that your GI won't provide pain meds - our conditions cause such terrible crippling pain and the stress this causes our bodies can only make this worse. What other options other than ER do you have for pain meds - can you see a pain specialist or at least a 2nd opinion from another GI that might be a better fit for you as your GI.

So sorry you can are in pain. I know the pain meds only mask the symptoms (and would rather not have to take them) but I have been in tears many times due to pain and don't know what I would have done without them.
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07-15-2014, 12:27 PM   #16
valleysangel92
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Wow.. I too am stunned that they won't give any pain meds at all.. What about your primary care practitioner? My GP is always happy to provide me with painkillers whenever I need them.. Crohns is a painful illness and we shouldn't be expected to just put up with it
07-15-2014, 08:21 PM   #17
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JeanBean - I am stunned that your GI won't provide pain meds - our conditions cause such terrible crippling pain and the stress this causes our bodies can only make this worse. What other options other than ER do you have for pain meds - can you see a pain specialist or at least a 2nd opinion from another GI that might be a better fit for you as your GI.

So sorry you can are in pain. I know the pain meds only mask the symptoms (and would rather not have to take them) but I have been in tears many times due to pain and don't know what I would have done without them.
I suppose I'll have to see a pain doctor but for now my GI will not prescribe me any meds and advises me to rush to the ER if I have a bad flare up.
07-15-2014, 08:24 PM   #18
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Hmm...I wonder if the tiredness was due to the malabsorption of nutrients. I am anemic and can be very tired from that alone. When I got the first dose of Remicade last week I felt extremely tired too...it is weird.
I think it's cause of the dip in our immune system - it's like how you feel right before you get the flu. That's just a guess, though - I've never asked why it does that. I do know it's common.

Wow.. I too am stunned that they won't give any pain meds at all.. What about your primary care practitioner? My GP is always happy to provide me with painkillers whenever I need them.. Crohns is a painful illness and we shouldn't be expected to just put up with it
I think they wait for you to ask. The idea being that if you're not in enough pain to ask for pain meds, then you don't need pain meds. I refused all pain meds for years, because I had small children and needed to be sober. Now I will only take pain meds at night time because, while my children are older, I want to be emotionally available for them and I need to be on the ball as they are teenagers. Plus, my youngest is special needs and has to be watched more carefully than most children his age.
07-15-2014, 08:31 PM   #19
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Wow.. I too am stunned that they won't give any pain meds at all.. What about your primary care practitioner? My GP is always happy to provide me with painkillers whenever I need them.. Crohns is a painful illness and we shouldn't be expected to just put up with it
A friend of mine told me this morning that I should contact my primary care physician... that's fine but I've had a couple other GI Dr's before and they didn't have a problem prescribing meds for emergency purposes. This is all strange too since I'm usually against taking narcotics and kind of gave the nurses a hard time every time they offered me pain killers during my last hospitalization. The surgeon and the GI know that from the nurses report.
07-15-2014, 08:33 PM   #20
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I suppose I'll have to see a pain doctor but for now my GI will not prescribe me any meds and advises me to rush to the ER if I have a bad flare up.
I can't guarantee it, but I know in this area crohns+ER visit = any pain meds I need. ER doctors are very willing to help us crohnies with pain - as long as they don't get the idea that you're an addict. They normally give me a shot of dilauted right there.
07-15-2014, 08:38 PM   #21
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I think they wait for you to ask. The idea being that if you're not in enough pain to ask for pain meds, then you don't need pain meds. I refused all pain meds for years, because I had small children and needed to be sober. Now I will only take pain meds at night time because, while my children are older, I want to be emotionally available for them and I need to be on the ball as they are teenagers. Plus, my youngest is special needs and has to be watched more carefully than most children his age.
mindiemonster, that is exactly the reason why I hate taking narcotics, I have a little one that needs my full attention. I want to be alert and I get anxious if I'm not in control. So, although I am in extreme pain, while my blood pressure is sky rocketing and there is proof of my discomfort I will think twice before I allow myself to be sedated.
07-15-2014, 08:43 PM   #22
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mindiemonster, that is exactly the reason why I hate taking narcotics, I have a little one that needs my full attention. I want to be alert and I get anxious if I'm not in control. So, although I am in extreme pain, while my blood pressure is sky rocketing and there is proof of my discomfort I will think twice before I allow myself to be sedated.
I totally hear you. There are other options - they don't work as completely as narcotics, but they might make things more bearable. My main go-to is a hot bath, the moist heat loosens the cramps in my stomach and reduces my pain levels. I also have used some aromatherapy ... am I allowed to post outside links in this forum? Just google aromatherapy and pain. My favorite is lavender and you can get lavender scented epsom salts to put in your bath. You can knock two birds out with one stone and put some essential oils in your bath.

Have you been warned about the connection between your 'cycle' and crohns symptoms? I ask because getting rid of my period has done WONDERS for my pain levels.
07-18-2014, 11:39 AM   #23
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Have you been warned about the connection between your 'cycle' and crohns symptoms? I ask because getting rid of my period has done WONDERS for my pain levels.
Was never told otherwise... but I have uterine fibroids so my cycle can extend as far as 10 days and can be very punishing. You may have a good point though, it's possible why I was so miserable this week. Good news is: today I am finally down to two pills on the steroids and my next Remicade infusion is tomorrow morning. Looking forward to it...haven't really had a good week.
07-18-2014, 11:31 PM   #24
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Was never told otherwise... but I have uterine fibroids so my cycle can extend as far as 10 days and can be very punishing. You may have a good point though, it's possible why I was so miserable this week. Good news is: today I am finally down to two pills on the steroids and my next Remicade infusion is tomorrow morning. Looking forward to it...haven't really had a good week.
So do I. lol I got merina (sp?) - it's an IUD. Merina releases a low dose of hormone that reduces the size of your fibroids (and therefore the pain) and gets rid of your period. Well, sorta. I have a period every month, but it only lasts about two hours and is really light. Usually by the time I realize it's there, it's done. Either way, good luck on your infusion and WOOHOO on the steroids (or lack thereof).
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