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Posted 5/22/2011 6:04 AM (GMT 0)
Its almost 2am where I'm at and I am just sitting here alone letting everything overwhelm me. First off let me say, I am a new member to this community. Found this forum on Google. In hopes of getting some advice and just simple information or maybe just a few words of encouragement. I am 20 years old (21 in two weeks) I was officially diagnosed with Ulcerative Colitis back in august on 2010. In the beginging they thought my case was considered mild but as of now, I am at my last step before surgery. My health has turned for the worse and I am considered a "severe ulcerative colitis" person. I was just released from the hospital two days ago after a three week stay. Doctors have tried everything from my 6 prednisone tapers over a period of 8 months, to lialda, asacol, 6mp, you name it i've tried it. Now i am starting my 2nd IV infusion of remicade. Doctors said if this doesn't work, surgery is my best option. In the mean time I am waiting to see if this remicade works. During my stay at the hospital they put me on the steroid solu medrol? (they took me off the prednisone)..i noticed my face swelling (known as moonface?) i was only on it during my hospital stay and I am wondering how long that 'moonface' will last. The only thing i've found on the internet was people saying it could take months but those were for people who were on the solu medrol for a long time. Its superficial, i know, but i am young and its really breaking my spirits to have all this stuff going wrong and then not feeling good about my appearence. Another thing i noticed yesterday was I was having severe joint pain. I called my doctor and she didn't think it was because of the medication. However, i looked up side effects from the solu medrol and noticed that some people had expierienced joint pain. will this go away as the steroid gets out of my system? I have so many questions about everything and I just need a little guidence. this is the worst thing i have ever been through in my entire life and i have never felt more alone. someone please help me.

thank you.

Posted 5/22/2011 9:16 AM (GMT 0)
Hi,

I hope this is ok, I don't have ulcerative colitis. I do have seronegative rheumatoid arthritis, fibromyalgia and a non existent immune system. I'm 32 and when I read how sad and alone u are feeling I wanted u to know that your not alone. I know what it is like to be in constant pain (I read a little bit about your illness) so I can imagine u are in pain a lot as well. And pain alone can wear u down. I not sure if 32 sounds old to a 20 year old but be assured I am not an 'old' 32. Until last year I was clubbing and drinking and going to parties. I don't have kids or a partner (I enjoyed being single, still do). And then one day my life was turned upside down. I was misdiagnosed for 3 months with Ross river fever (mainly cause they couldn't figure out what was wrong with me) eventually they did a bone scan and the results...arthritis in every single joint of my body. I'm now in a wheelchair.

The doctors put u on all these medications, that make u swell up, get all puffy, your skin breaks out, u put on weight and all the other fun stuff and well frankly, it sux! I'm the same as u, I figure if I have to go through constant pain and deal with a horrible situation, can't I at least look pretty while it's happening? My medication makes me puffy too and it put wheight on. Not happy! ;)

I hope someone will respond to u that knows about the meds your on and can tell u more about them. But in the mean time we can pretend that we are having a lovely girls night in. Ok? We've put our comfy p.j's on, got our hair pulled back in a towel while a nice hot oil treatment is making our hair look all silky and gorgeous. We have put a girly movie on but we are so busy talking were bearly watching it. We have our toe seperators on and I'm painting your toe nails....hmmm....red! Cause it's bright and fun. We then decide we are going to apply our mud masks to our faces. 15 minutes later, while we are desperately trying to drink our champagne without cracking the mud masks we realise.....to hell with champagne, let's make margaritas (cause we can use straws for those hehe). Hair all treated, toes all pretty, mud masks all washed off and we are sitting on the couch drinking our yummy cocktail's and we, YOU look beautiful.

Hang in there, I'm here and I'm listening and together we can 'dance like no one is watching'. And be beautiful.

If I helped or if ever your feeling alone, or just anything u can email me [email protected]

I have days when everything gets on top of me too. Why me! And, why can't I just be normal! Sometimes on Friday and Saturday nights when I'm lying in bed I can hear parties going on around my neighborhood and I always have this thought in my mind as to when do I get to go back to 'my life'? But my life has changed. As annoying as it is, that's that. I'm changed, my life is changed and if I don't change with it then my life is going to leave me behind. So we adjust and we come to places like this and learn that were not alone and things might be crap and sux and today we hate it all! But remember, now, your not alone. :) and maybe tomorrow will be a little better :)

Sending u a big hug.

P.s. I just wanted to say, so as not to freak u out or anything. I'm not trying to cheer u up cause I'm some do gooder or crazy person who is desperate for friends or any of that nonsense. But I'm new to all this too. Been sick since nov 2010. And u sounded sad and i guess i kinda am doin like a big sister/friend deal, I wanted u to know that someone listened and heard you ask for help. And understands how lonely it can feel.

I hope u had fun at our 'girls night' (imagination helps) and i hope it made u feel a bit better. What shall we do next time?

Feel better beautiful. Hope to hear how your doing soon.

See ya
Liv
(seronegative rheumatoid arthritis, fybromyalgia, alloydonia, carpal tunnel, immunodeficiency and depression survivor) This is a list of my illnesses. But they do not define who I am. Don't be defined by what u have, be defined by your actions and who u can be! smilewinkgrin Being brave is to be frightened of something but doing it anyway, not by the absence of fear. We can be brave together yeah
Posted 5/22/2011 3:21 PM (GMT 0)
Hi and welcome to the forum shelbyc. . Im sorry to hear what you are going through. As of yet my longest hospital stay was an overnight so you have it worse that me but i do share some common problems with you. I have been on almost everything as well. Ive been on so much prednisone i lost count on how many tapers ive done. Ive got moonface as well and to tell you the truth im not sure how long it takes to go away cause i havent been off long enough to find out. The joint pain can be a number of things. I dont wanna scare you cause chances are its just inflamation caused by your colitis but since i was just put through the ringer with my joint pain i figured id let you know what it could be. As i have been finding out joint pain is common with us UCers. Its best to see a rhemotoligist so you can pin point exactly what it is in case its not related to your UC. In my case i tested positive for lupus. Im still going through tests to be sure but my doc seems to think thats what it is. From what ive been reading people with 1 auto-immune disease are like 30-40% likely to get another.. I could be wrong on that percentage im just going off of memory right now and my memory sucks...lol RA could be another possibility. Also remicade has been known to cause lupus like symptoms that will go away once your off it for a few weeks. Like i said before i dont want to scare you cause joint pain is very common. I also want you to know you are not alone here. Here we know and understand what you are going through and are here to help or even just to talk if your feeling down ;)
Posted 5/22/2011 3:57 PM (GMT 0)
Hey shelbyc. I know how hard it is to come to terms with UC. I've had it for almost 10 years, and every time I go into remission, I almost forget I have the disease - not because I get so healthy, but rather because I have to. I have to forget for a few weeks or months, if I'm lucky, that my body betrayed me, forcing me to live with what is probably the most embarrassing, un-sexy, gross symptoms there are. Making me envy every person I see outside, taking a walk, playing frisbee in the park, riding a bike, because I can't, the majority of the time, without risking a very public pants shi**ing. I hate the medications, their side effects, the supplements, the doctors, the trying new pills because the last ones didn't work. The "Sorry honey, I can't go to the grocery store with you today.. or anytime the next few weeks, 'cause I'm not leaving the house" and the "Not tonight, my stomach's not feeling too good" and the "Thanks for inviting me girls, but I haven't left the bathroom in 3 hours so I can't come have drinks with you." But you will come to terms with it and at some point, you will feel better. You will grieve your health and your youth (in a way), but just remember you're not the only one, you're lucky to have access to healthcare, and you can live with this (well, even).
Posted 5/22/2011 8:22 PM (GMT 0)
Hey Shelby,

Sorry to hear what you are going through.

I had horrific joint pain coming off the prednisone (steroids) and that is common I gather.

I had the surgery - I was absolutely terrified - but it went well. Even though I have had complications, I am still much healthier and happier than I was with UC and no more steroids, noon face and massive weight gain!

There are many people that have had the surgery and have done really well - so if that is what you need eventually know that you are not alone and that things can get good again :)

Take care and good luck.
Posted 5/22/2011 8:32 PM (GMT 0)
Hi Shelby-

You are not alone... there are many people who have gone through this too and can help you get through it.

I ended up in the hospital with a severe flare up of UC last September. I stopped responding to all my usual meds, including massive doses of both Prednisone and then I.V. Solumedrol. I was given the "try Remicade now or have emergency surgery" option as I was declining very quickly. After researching Remicade and surgery, I actually decided I would rather go the surgical route. I didn't like the idea of disabling my immune system by having to take that drug for the rest of my life. Still, I ended up trying the Remicade to at least get me out of the hospital to heal up and get stronger as I didn't want surgery when I was so weak. After about 6 days, the Remicade successfully ended my flare. The drug might have been successful in putting me in remission, but it gave me excruciating joint pain after one infusion. My future infusions were cancelled, and I opted to have a permanent ileostomy a month later. It was the best decision I ever made. Now that I am healed up, I feel better than I have in 6 years. No more meds, no more UC and I am back to leading life to the fullest!

If you are having joint pain, it could be from the Remicade. My joint pain showed up 6 days after my first infusion. It was horrible... some of the worst pain I have ever experienced. It felt like someone was stabbing me in the joints with an ice pick over and over. Every day, it seemed to show up in a different joint which was really weird. Pain meds did nothing to relieve it and I would just cry in pain for hours. Some days I could hardly walk and my husband would have to carry me up and down the stairs. My doctors admitted it could be from the Remicade, but also tried to tell me it might be from Prednisone or even arthritis. I thought that was unlikely. I had been on and off Prednisone and Solumedrol numerous times during my history with UC and never had anything like this pain. And the fact that arthritis would show up so quickly seemed unrealistic. I had UC for ten years and never had any joint pain with it. I also got tested for drug-induced lupus, but fortunately the test came back negative. My Remicade suspicions were confirmed when I stopped the drug. As it slowly worked its way out of my system over about six weeks, all joint pain went away. The FDA website on Remicade talks of delayed reactions including joint pain.

http://www.fda.gov/downloads/Drugs/DrugSafety/ucm089023.pdf.

Perhaps I had developed antibodies to the drug. I never got tested for them because at that point I was so tired of being sick and in pain that I was excited to have surgery. I am not saying that your joint pain is from Remicade, but it is definitely a possibility.

I know the moon face is a bummer. I was on Prednisone for a month before being admitted to the hospital, and then I was on IV Solumedrol for two weeks in the hospital. After that, I was put back on oral Prednisone and slowly tapered off of it over a period of two months since I had been on such a high dose. By the time I finally took my last dose of Prednisone, I was already a month out of surgery. It just takes soooo long to taper. So all of that added up to about 4.5 months on Prednisone. My moon face (which happens both with Solumedrol and Prednisone) took about two months to go away after my last Prednisone pill. It does go away though, so hang in there.

And if you find you need surgery, it is okay to be scared, but don't let the fear get in your way. People lead healthy and happy lives after surgery. Check out my blog and videos and see the things I am doing now that I am 6 months post-op. None of this would have been possible with UC or with the Remicade pain I was having.

http://ostomyoutdoors.wordpress.com/

The ostomies section of Healing Well has lots of information on surgery too, it you find yourself in that situation or just want to do some research. The people on both these boards are wonderful!
Posted 5/22/2011 9:24 PM (GMT 0)
Hi Shelby,

I was 16 when I was diagnosed.  I'm 37 now.  What a horror this disease is.  I'm coping a bit better then I used to but it's hard to not have bad days when your overwhelmed.  It was awful being a teenager with this disease and explaining to my friends why I haven't been in school, or why I can't eat certain foods (I was gluten free) or how dare I say "colonoscopy!"  Yuk!  It still grosses me out.  As a result of this disease I didn't reach milestones as quickly as my friends, ie. dating, finding suitable employment, finishing school.  I graduated university in 5 years rather than 4, but I still did it.

Equally as horrific was my experiences with several GI's.  One said he would "rip your colon out if I didn't get of the steroids."  Every conversation with me was about surgery.  This terrified me.  He offered no alternatives.  This continued through 7 GI's until I found the one that I was finally comforable with.  I can voice my opinions about treatment and he listens. 

The decision is yours but you've only just been diagnosed less than a year ago and in this first year everything is overwhelming from the drugs, to social life, career and just understanding that life is now different then what it used to be.  That voice that comes to you in the middle of the night is just your scared inner critic.  Everyone of us has it.  It took me a very, very long time to learn how to control it. 

This disease comes in waves.  It can even be seasonal.  My colon shows "mild" disease but my last flare was 60 days going 30 times day and night!  If that's mild I'd hate to think what severe is.  My point is try and give your mind and body to adjust before making decisions about surgery.  There is treatment available.  Sometimes it works and sometimes it doesn't.  Give the remicade a chance to work.  It has given many people there lives back.  There are also others like Humaria etc.  If you keep switching from one drug to another, you'll never know what works and what doesn't.  I would also suggest trying the SCD diet.  Even if you go for the celliac test or gluten sensitivity test, they can be false negative.  Try it for 3 months.  If it doesn't help, even a little move on. 

There are also a number of herbal remedies that can help.  Anything from aloe to l-glutamine, cats claw, etc.  These are also worth looking into.  But again if you're getting overwhelmed take a break for a couple of days.  Nothing terrible will happen that can't be fixed. 

My point is there are options.  There always is.  Just do your research and take your time.  Unless your colon is perforated, there is no need for surgery.  In a few months if you still feel surgery is the best option for you then go ahead.  I just don't want you to rush into anything out of fear.

I remember many, many times when I was in shear terror that my bowel would explode or that one tiny morsel of food was going to put me into an even worse flare.  The unpredictability of this disease is the worst!  Learning to control what works for you and doesn't takes time and patience.  But in the end it empowers you.

As far as predisone...I was on it for 6 years.  Every time I weaned off I flared until I was in a constant flare.  I totally understand all the side effects including weight gain and mood swings.  The joint pain is likely part of having inflammation.  My hands and feet ache every morning. 

I'm so sorry you are going through this.  My heart goes out to you.  We have a terrible disease that is difficult to talk about and there is little attention paid to it.  If you have a friend or counsellor to talk to I would recommend doing that.  A good counsellor will teach you coping strategies and may even suggest anti-anxiety pills (which incidently help IBD too!)  I've also in the last 2 weeks downloaded a hypnosis cd onto my i-pod because I was nervous about an upcoming trip.  It was specifically for IBS.  I don't know if it will cure me but I'm certainly more relaxed listening to it and low and behold I had a disease free 5 days- which has never happened before!

The other thing you could try although is very experimental for IBD is IVIG.  It's basically blood transfusions of antibodies that fight disease. It is the only thing that puts me into remission.  Be warned, although there is a few studies and successful cases most GI's will dismiss it as it is extremly expensive.  If you are in Canada (Toronto) I can help you get it.

Take care and don't be so hard on yourself.  That negative voice is not helping you.

Good luck and once again I am so sorry.

Ruby

Posted 5/24/2011 3:47 AM (GMT 0)
Thank you everyone for all the support. It's really hard to talk to people about this when they aren't going through it themselves. After being hospitalized for 3 weeks I believe my family and friends realize that this is just not "oh you go to the bathroom alot" "or food upsets your stomach" that its a literal dibilitating disease. I got some bad news today that i am not really sure about..Apparently my insurance covered the remicade that i had taken in the hospital when i was there for 3 weeks but they wont cover it outside of the hospital. I guess my In pacient and OUT pacient policies are different. And i know how expensive remicade is and how often i need to take it. My family is helping me out financially (since i cant work right now) but there is no way i could even bother them with the thought of that burden. My flare up is going on almost a year now with nothing making it better so it does really make me want the surgery..i mean, i dont WANT it but if thats coming down to my only option. For those who have had it, does this mean i will have a colostomy bag the rest of my life? and does it mean i can't have children? I've only heard horror stories and everything I find online says one thing or another. I feel so helpless and lost and i have had 3 different doctors saying different things. I know the doctors said if i had the surgery that they would completely remove my colon and large intestine..which is first and what is the process. I am unfortunately the type of person who sits in the doctors office 'yessing and okaying' everything behind glazed eyes of horror and not asking questions (something i know i need to get over)..this is just all super overwhelming and i don't even know where to begin. Also, My doctor said that i shouldn't be too concerned with what i eat which blows my mind because i KNOW certain things upset my stomach..i just dont understand why he would say that? THATS YOUR JOB and you went to school and studied the digestive system, how the hell would you not know that foods can trigger upset stomachs? I mean he's a great doctor but part of me feels like i am either misunderstanding him or he doesn't know what the hell he's talking about. Maybe i need to look into another one..any ways..if anyone could give me any more insite on the surgery (just incase this remicade situation comes back and i wont be able to afford it or get coverage) that would be much appreciated. The thought of a colostomy bag terrifies me. How long would i have it? is it hard/disgusting/stomach turning? so many questions..ugh
Posted 5/24/2011 10:32 AM (GMT 0)
shelbyc, sorry to hear the bad news and that you're feeling down... I know how much remicade costs cuz i'm on it right now too. My Dr's office actually gave me a remistart card/brochure that helps u out with finances depending on your health coverage or lack of coverage... go to www.centocoraccessone.com and fill out the enrollment form and see if u qualify! Good luck =)

Hopefully u can avoid surgery (dr said that's my next step too if the remi doesn't work)
I am currently debating on whether or not to try the SCD diet. I've heard of a lot of patients on the verge of surgery totally giving up on western medicine and putting all faith in things like acupuncture, herbs, and the SCD diet, also the Maker's diet.. Stories like that give me hope and make me want to try anything and everything to avoid surgery... Of course u know ur body better than anyone and Im not suggesting you go against doctors orders but these are just things you can look into and research for yourself.

As far as the moonface goes and being 'superficial' I totally relate! I'm 31 yrs old (not as young as u) but i'm female and my face got round too... Along with my hair falling out!!! And to top it all off, I'm a hairstylist!! It fell out so much that I sort of went into a mini-depression about it and sometimes felt that I'd rather just be sick than have my hair fall out anymore! (talk about superficial, right?) Of course I didn't go bald and my moon face went away after tapering the prednisone so just hang in there. I understand what you're going thru right now and I can empathize. U are soooo not alone! Good luck to you and let us know what u decide
Posted 5/24/2011 12:06 PM (GMT 0)

shelbyc,

 

Welcome to this forum. It is a wonderful place to get l lots of answers, ask questions, and support from wonderful people who have all suffered and can certainly relate to all that you are going through. Sorry you have to be a part of this terrible "club" though.

 

Regarding, the surgery..i mean, i dont WANT it but if that's coming down to my only option

IMO, surgery is not your only option,

read the post from cologne1:

https://www.healingwell.com/community/default.aspx?f=38&m=2105367&p=5

where he says " I do not have enough time to read through all of these but..... if you have not tried LDN then read my story. I posted a new message some weeks ago call 'Ulcerative Colitis in remission'. Read how I took one Remicade treatment after I had stopped bleeding (3 days prior). I feel that was a mistake but I was getting so desperate I felt what could it hurt, my choice at the time was that or snip snip. I will never know as I found out about LDN near the end of my rope. If I had the experience to do over I would jump all over LDN first !"

Sorry you're having such a tough time. UC is a terrible disease. I don't know if you've read any of the other posts, but I would recommend you read the ones on LDN.


www.healingwell.com/community/default.aspx?f=38&m=2079694

I was diagnosed with UC and was bleeding pretty badly for close to 1 year,  tried various regular meds which didn't work, they wanted me to take Remicade and I refused. Then I got the remicade or colon removal talk, and I said NO. I did lots of research and found LDN.  It saved my colon, and in the process I started getting my life back.

Please do your research on it. To me, it should be the drug of first choice, rather than last resort, because it has almost no side effects, is cheap. But don't be fooled: most doctors will NOT prescribe it for you. You'll probably need to go to an alternative doc to get it prescribed. If you do decide to go for it, make sure you get the Transdermal LDN prescribed.

Here's my initial post, and a crash course in LDN:

I started on 4.5mg of oral LDN on 2/7/2011, and saw no change - still continuing to bleed at a 10.

When I spoke with the compounding pharmacist, she mentioned that I may not be absorping the LDN properly, and suggested I switch to a transdermal LDN formula, which would be a cream applied to the bottom of the forearm. She told me alot of her pediatric patients do much better with the Transdermal LDN, and in some patients with absorption issues it helps too.

LDN - low dose naltrexone is very cheap - it costs around $25-30 a month (for pills or the transdermal cream). Gastro doctors usually don't prescribe it because they say "it isn't the standard of care". My gastro refused to prescribe it, so I found a local osteopath who did. I did ALOT of research, and the bottom line is: it works!

Once you get the script for it, you'll need to get it from a compounding pharmacy, who'll make it up for you, and ship it to you. The best compounding pharmacy in the country for LDN is Skip's Pharmacy in Boca Raton, FL.

They ship all over the world - they have 20,000 patients with various conditions on LDN. That's where I get my transdermal LDN. If you contact them, they'll tell you who locally to you will prescribe it to you.

You can reach them at: 800-553-7429

www.skipspharmacy.com

Please, go to www.youtube.com write: Low dose Naltrexone in the search field and you will find a pharmacist explaining where in the U.S you can buy your medicine. You can also read these pages to find more info to bring to your doctor:
www.ldninfo.org

www.lowdosenaltrexone.org
www.ldnscience.org
www.ldnresearchtrust.org


and if you want to find what other Crohns patients have experienced when used LDN, choose Crohns Disease at:
www.ldndatabase.com

Hope this helps. Good luck to you.

Please let me know how it works out for you.

Posted 5/24/2011 12:22 PM (GMT 0)
Hi Shelby -
I'm glad you found us - at least we can help you to feel not so alone!

You asked about having children.... many of us have. Both my sons were born after my diagnosis, and I was in my best and longest remission from conception through the end of breastfeeding them.
Since diagnosis, I also took up singing (and performing) and horseback riding. So..... first things first: getting into remission.

Maybe I missed this in your posts, but.... have you tried the rectal meds? Either Rowasa (5-ASA based) or steroid retention enemas? I find those to be a much more efficient means of getting the medication to the affected area.

As far as diet, in my experience most GIs will say it doesn't matter. That just seems to be the party line. On the other hand, it was my first GI who advised me, when flaring, to stay away from raw fruits and veggies, "sharp" foods that might scrape going through (corn, popcorn, coleslaw...) gassy foods (because while flaring the gas can hurt)..... Each of us is different in what foods help or hurt. I can do dairy and wheat just fine; others have benefitted from the SCD (Specific Carb. Diet).

Keeping a food/poop journal could be a good way to find out what your own system can handle. And for me - what I can handle in a flare (in which every swallow of anything can send me to the bathroom) is different from what I can handle in remission.

Keep us posted!
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