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flaring after a long solid remission - frustrated, depressed (LONG)

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Posted 9/28/2013 9:10 PM (GMT 0)

This is long - sorry about that. I want to describe all the recent changes I made in my medication and supplements in case anyone has input or thoughts. Okay - that's a little bit of a lie. I want you all to tell me that I'll be better in another week or two.

I guess I also just need to vent. I have no one I can talk to about these things. Who wants to hear about my BOWELS?

Here's my story, and what I'm currently dealing with...

　

~~~~~~~~~~~ FINALLY IN REMISSION AFTER 10 YEARS OF FLARING ~~~~~~~~~~~

I had 10 years of being unable to get into remission with my UC, then finally I did when I discovered that iodine supplements really helped. (Long story there - I can talk about that more, if anyone is interested.)

I'd had a couple of Remicade drips, and I was on 12 pills a day of Asacol (now discontined due to greedy drug companies since it's off patent, so I'm switched to Delzicol, which I don't like because the pills are bigger), and I'd been taking 6MP until I discovered I have a genetic mutation that makes 6MP dangerous to me (another long story, I'll just say that 23andme.com is a cool service).

I was doing so well after I started on the iodine (the supplement I take is called Iodoral) that I stopped the 6MP, especially since my body couldn't metabolize it properly and I was still in very solid remission. Several months later and I remained in solid remission, without 6MP.

~~~~~~~~~~~ AN ASIDE (MY HISTORY) ~~~~~~~~~~~

I'm 57 years old, I've had ulcerative colitis for over 40 years, and I'm dead sick of it. The first excruciating gut pain was at 12, the first blood was at 18, the diagnosis of universal ulcerative colitis was at 25. I can't tell you how sick of it I am. I'm sick of having ulcerative colitis. It BORES me. I absolutely HATE having this disease. When I flare and the excruciating spasms come that have me with "dry heaves" on the back end, crying on the toilet, with nothing coming out but blood and mucous, it just makes me MAD. When I have to spend the first 2-3 hours of every day on the toilet, it just makes me MAD. I'm sick of having ulcerative colitis, and I'm mad that I have it. Just needed to say that.

~~~~~~~~~~~ STARTED TO TITRATE OFF SEVERAL MEDICATIONS ~~~~~~~~~~~

Back to what happened recently... I also have a problem with migraines, and I've been taking Topomax for migraine prevention, but it was doing jack. Since the iodine had been so amazingly effective with my UC - first solid remission in 10 years - I thought I'd research some nutritional solutions to migraine, and I found one - very effective (magnesium, and secondarily Vitamin B2 - I can say more about this if anyone is interested). So I decided to titrate off the Topomax.

I also have trichotillomania. (Don't ask - it's horrible and embarrassing.) My psychiatrist, who gives me Adderall for ADHD (is this good for UC?), suggested I try Zoloft for the trich. I did, and it did nothing, but I continued with the happy pills for a while - what the hell. But since I was discontinuing non-essential prescription meds and giving my poor liver a rest, I decided to titrate off that, too. I also had found a nutritional cure for the trich (NAC and Inositol - I can say more about that for anyone who is interested, but trich is a rare disorder, so I doubt anyone is interested).

So now I'm off 3 prescription meds: 6MP, Zoloft, and Topomax. This was all well thought out and for good reason.

Then there was the Delzicol, the in-patent substitute for Asacol, an anti-inflammatory for UC. I'm supposed to take 12 per day (maximum dose). Asacol tablets are small, and I can take several at once. Delzicol comes as Size 0 capsules - much larger. I don't like taking pills, and I especially don't like taking large pills (they make me gag), so I wasn't taking them. Nothing bad happened at first, so I continued to not take them. I wondered if I still needed them - thought I'd do an experiment and find out.

~~~~~~~~~~~ HERE'S WHERE IT WENT DOWN HILL ~~~~~~~~~~~

First I started to get a little gassy. I should have immediately started taking the Delzicol when this started - I have DECADES of experience with this symptom and I KNOW what it means - but I didn't.

I told myself it was because I wasn't taking lactose enzyme when I had milk products (I'm slightly lactose intolerant). Also, I take a high dose of Inositol (aka Vitamin B8) for the trich, and this has a side effect of gassiness. But I'd been taking Inositol for a while and had already adjusted. That didn't even make sense.

I was lying to myself - in denial. That is a very dangerous thing to do.

Then this past Monday (September 23 - 5 days ago), I woke up flaring badly. It was the Full Monty - friable mucous, blood, spasms, pain, can't get off the toilet for the first several hours after I wake up. I get excruciating intestinal spasms when my UC flares - horrible, horrible IBS.

I immediately became compliant with the Delzicol, and have been taking it as directed ever since. I also did a little self-medicating with some leftover Prednisone I had. I took 60mg on Monday, then tapered off 10mg per day each day after, like those steroid packs you can get. I did this without consulting my gastroenterologist for two reasons:

(1) I'm scared to tell him I went completely off my medication because he'd be so angry, and

(2) He's been telling me for months that I need to come in for an appointment and I don't go - also, I'm overdue for a colonoscopy.

The Prednisone helped. I didn't see any blood on Tuesday, and there was little pain in the morning. As I've come off the Prednisone, the pain and blood has come back, but not as bad as it was that first day. This morning I took 10mg of Prednisone, and now I'm off it - I won't take any tomorrow. I'm hoping it kickstarted some healing.

I haven't had a great day so far today, but that may be because I ate like a crazy person yesterday, for some reason. I do that sometimes when I'm flaring - I think because not being able to eat pisses me off. I rarely overeat, but yesterday - of all days - I overate on (drum roll), candy and ice cream (huh??). I'm scared and upset and feel bad, and perhaps the child in me thinks this will make me feel better. Or perhaps I'm just rebelling. In any case, it didn't help matters. Overeating is not a great idea during a UC flare. I've eaten almost nothing today (it's 5pm). I haven't been at all hungry, after yesterday's junk-fest.

~~~~~~~~~~~ WHAT I'M DOING TO HELP MYSELF NOW ~~~~~~~~~~~

Here are some things I'm doing to help myself (besides taking the Delzicol as directed, and no more eating like a crazy person):

- I have a really great "damp heat" heating pad I got on Amazon, and when I put this on my gut it helps to calm things. It feels wonderful, and mitigates the morning spasms.

- I didn't take the Inositol yesterday in case it's increasing my gassiness. It's the NAC I need most for the trich, and I don't want to take anything that makes my bloating worse. My lower belly is very distended.

- I'm trying to sleep at night (challenging with the Prednisone - it will be easier now I'm off it). Before the flare, I'd frequently been staying up all night and not getting adequate sleep. This is a classic setup for me to flare, so I've been trying to make sure I get adequate sleep every night.

- I started mixing in some L-Glutamine with the diluted juice I take my pills with (I mix in other supplements, as well). L-Glutamine, for those who don't know, is an amino acid that is used in maintaining muscle mass (so body builders like it) and in rebuilding the wall of the bowel. I should take more than I am. I'm just taking it once a day, but I could be taking it 3x per day, every time I take the Delzicol.

I'm NOT back on the 6MP. I think I flared because I stopped the Asacol/Delzicol. I don't want to take more prescription meds than I really need. Also, as I mentioned, I have a genetic mutation that makes this immunosuppressant especially dangerous to me, and my mother died of lymphoma. I don't want to be on it.

~~~~~~~~~~~ I'M SCARED I'M SCARED I'M SCARED I'M SCARED ~~~~~~~~~~~

I have a fear that I'll never get back into remission. That by changing too many things at once, I've hopelessly rocked the boat and I'm going to be sick and in pain for the rest of my life.

I want this flare to go away - desperately. I want to be back in remission. I want to feel good. I want to feel in control of my body and my life.

If anyone has actually read this long missive, I thank you from the bottom of my heart. I really needed to express how I felt. I know everyone has their own problems and I'm not the sickest one here - or the only one here. So thanks in advance - very much - to anyone who reads this or responds. I don't know if anything I wrote here is of any help to anyone else - I guess it's all about me. Sorry about that.

I wish good health to all of us.
Posted 9/28/2013 9:22 PM (GMT 0)
I'm curious why you took the 6mp as long as you did. It sounds to me like you continued taking it for a while even though you knew it was "dangerous". I think you are going to have to bite the bullet and see the GI and be truthful with them. Taking the pred and returning to the Delzicol is probably the best thing you can do for right now. Have you tried opening up the Delzicol capsules and just taking the Asacol tablet inside? Many here have done that. Also, you may want to think about taking Asacol HD instead of the Delzicol and maybe talking the doc into rectal meds.
Posted 9/28/2013 9:45 PM (GMT 0)
RECTAL MEDS FTW. Sorry you've fallen out of remission. It is totally a human thing to be in denial - it ain't just a river in Egypt - and we all do it. WE ALL DO IT. Your GI is not your mom. He might get angry, but if he's a good doctor he will empathize most of all and help you through this.
Posted 9/28/2013 10:36 PM (GMT 0)
I read the whole thing! Holy cow! I don't see how long you were in remission though! If it was a really long time it would be easy to be complacent, I go in denial after a week!!! Really F'd up disease!
Posted 9/28/2013 10:38 PM (GMT 0)
Hi Canopener,

I don't really have any useful advice (I don't think I'm experienced/informed enough with Rx meds) for you, but I wanted to respond to "I'M SCARED I'M SCARED I'M SCARED I'M SCARED"

I'm so sorry this happened this week and that you're feeling not only physically awful, but emotionally awful, as well. I think a majority of us have been in the same boat thinking that we would never and could never possibly get better. I was at that point about two months ago. Terrified, nearly hopeless, and crying about 50 times a day. You're not alone in this feeling!

Talk to your GI, keep believing in yourself and your strength, and know that you will certainly have better days than you are having now--no matter how unlikely that seems. Good luck! Keep us posted!
Posted 9/28/2013 10:58 PM (GMT 0)
Sorry your out of remission. Many people learn the hard way not to go off their meds. Its good your back on them and I would suggest rectal meds too. Call your GI it sounds like its time to see him. You won't be the first person to say they quit their meds.
Posted 9/29/2013 1:51 AM (GMT 0)
Yeah, I'm also going to suggest mesalamine enemas. Hopefully they'll work we'll for you.
Posted 9/29/2013 2:28 AM (GMT 0)

Hi everybody,

I just came back here to peek - see if anyone actually read what I wrote - and look at all these wonderful responses! Thank you so much.

I've used suppositories of various types in the past - different types of steroids and anti-inflammatories, including mesalamine. Maybe I should look and see if I have any left over. However, these lower-end solutions are not always that effective for me because I don't just have left-side disease. I have "pan-colitis" - my entire bowel becomes ulcerated. The enemas and suppositories don't reach up that high. I need systemic treatment, but I really don't want to be on Prednisone for any length of time. I've been though 30-pound weight gains and moonface. Never again.

I know I should call my doctor. I'm realizing that another big part of my resistance is the last vestiges of denial. If I don't call my doctor to declare the flare, then it didn't happen (nuts, I know). It's like when I was 12 and had that first experience of excruciating bowel pain. I never told a soul - so it didn't happen. Get it? (Crazy, crazy, crazy.)

I went out and bought some aloe juice today (filtered, of course - I don't need more diarrhea), and I decided to up my daily dose of krill oil for omega-3 fatty acids. Both can be very effective anti-inflammatories for IBD. I'm about to take both of those, along with another dose of Delzicol.

Someone asked how long I'd been in remission... It was over a year - could have been 2 years. I'm not exactly sure. Close to 2 years, I think. 1-2 years, anyway. I really ENJOYED it!!

My gut aches ALL THE TIME now - even when I'm not on the toilet. My lower abdomen is always distended, and I have that weak, unwell feeling I have when I flare. When I looked in the mirror this morning I nearly screamed in fright. I was white as a sheet with purple circles around my eyes - very attractive (not).

To the person who asked why I was on 6MP for so long... That's because (1) I was flaring for 10 years (until I started the iodine supplementation) and nothing could make it stop - 6MP seemed to help, and (2) I didn't know I had the mutation that made it dangerous until very recently. When I asked my doctor about that, he said that instead of testing everyone for the mutation, he takes frequent blood tests to make sure patients still have white blood cells. Since I was in remission when I found out about this issue, I went off the 6MP (and afterwards told my doctor about it - he sounded annoyed, I think because he likes to be consulted on these things).

To the person who told me to open the Denzicol capsule and just take the Asacol inside... HOLY COW!!! I had no idea. This is freaking HILARIOUS!!! It's the same old pill but inside a brown capsule, so now they can change 50x more?!?! What is going on???? Why is there a pill inside a capsule????

Someone suggested I try Asacol HD. I tried that once some time ago, when I was still flaring (before my 1-2 year remission). My doctor gave me samples. The regular Asacol works better for me.

Thank you everyone for your warm and supportive responses. I want to read your stories in the forum and get to know you all. But I'm really feeling quite unwell lately, and mostly am in bed. I will be more engaged at some point.

Thanks again for your wonderful support!!
Posted 9/30/2013 1:35 AM (GMT 0)
I also have pan colitis and I assure you that it really doesn't matter when it comes to the effectiveness of enemas. Sure, enemas don't reach the entire colon. BUT, they do a much, much better job at treating the portion of the colon that they can reach, and oral mesalamine doesn't always do a good job of that.

But, studies rarely look at the effectiveness of enemas in pan colitis patients. I found one, however, and posted about it. Here's a link to the thread, which I encourage you to read.

https://www.healingwell.com/community/default.aspx?f=38&m=2398194
Posted 9/30/2013 2:08 AM (GMT 0)
Canopener, i'm sorry to hear all of thats happened recently. I know how frustrating it is. Today, I was telling my mom how crapty a life i've been dealt. My constant nasal congestion is no doubt connected to the gut, as everything else. Just recently, I had some gluten while my parents visited in early september and everything went downhill from there. Still no end to this nightmare in sight. But I will say, i have never flared as bad as I did upon first diagnosis.

Thank God, but its still pretty darn obnoxious to wake up at 7 or 8, move in bed, then need to use the bathroom, empty my stomach with mush.

Lately, i've found the only thing to really help me is Bananas. They allow me to stop going to the bathroom. I'm doing it differently this time though, i'm not giving up my carbs, just eating lighter in general.

I've found apples to be a success in forming bowel movements (a little right now).

Taking slippery elm nightly is what got me out of my last flare in february, now I have no idea how to get out of this one.

Good luck to you, let us know how you progress.
Posted 9/30/2013 2:03 PM (GMT 0)
Hi I just wanted to say your not alone I'm just starting in a flare after a good remission for over a year,and trying to work out how to play it this time I feel it's a bit like Russian roulette and I'm not sure if I will be able to deal with it myself or try and knock it down early with the pred,in case things start it get to bad to cope with.
I've just been reading on the site forum about mindfulness sort of meditation for people trying to cope with chronic illness,and I'm trying to get up the motivation to try it,I like you am quite sick of UC and it's only been my life for the 7 years not the last 40.
Anyway Keep the faith and try and stay positive I know it's hard as I think the nature of UC is that it drags you down mentally as well because you have to cope with disappointment when you think things are getting a little better and then they get worse again or you get to remission and then it strikes again just when your starting to forget about it.
Posted 9/30/2013 4:05 PM (GMT 0)
"I'm sick of having ulcerative colitis. It BORES me. I absolutely HATE having this disease. When I flare and the excruciating spasms come that have me with "dry heaves" on the back end, crying on the toilet, with nothing coming out but blood and mucous, it just makes me MAD. When I have to spend the first 2-3 hours of every day on the toilet, it just makes me MAD. I'm sick of having ulcerative colitis, and I'm mad that I have it. Just needed to say that.
"

Yeah man. It's like you're in prison and being slowly tortured every day. One of the word you used "bored" is dead on. It's like it doesn't facking stop.

For me, every freaking morning is a hassle. I have to put my diaper on just to avoid making a mess on the way to work. I don't always go in my pants but I always have to make sure. I hate the work day mornings,

Every morning that I have to work, I dread. I love the job that I do, if it wasn't for that, I dunno if I would still be working. Almost everyday, I wake up with the idea of calling in sick or take a vacation day. Not because I'm tired, or sick or whatever, but because I don't want to facking deal with this bullcrap every f*acking day, it drives me insane.
Posted 10/1/2013 5:40 AM (GMT 0)
I agree with Sherbear. You need a reliable gastro who is willing to "partner" with you so that you don't feel alone in your struggle. Most of us go off track with needed med and/or sensible diet at 1 time or another, which can lead to flaring. Now that it hit you, don't expend energy beating up on yourself; instead try to think positively about improving your chances to regain remission, taking 1 day at a time. It might be that you need to add an Rx antispasmodic temporarily to get past the toilet heaving stage. I would not advise any UCer to self-dose on Pred. You might benefit from a newer oral 5-ASA, such as Lialda or Pentasa. A lot more is now available to treat UC than existed back when we "oldies" were diagnosed, so I would urge you to look up G/I options in your area and also local support groups that might help your morale. Hang in there! / Old Hat (33 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 10/1/2013 6:09 AM (GMT 0)
I'm in pain ALL THE TIME. My gut just always aches, even when I'm not actively on the toilet. Right now I'm crampy and it feels like I can't completely straighten up. Other times it just feels "sore".

Does this happen to other people?
Posted 10/1/2013 7:01 PM (GMT 0)
I get like that when I'm having a severe flare up,with milder flares, I may have an hour or so in the morning of cramps pain and then again a bit in the evening and sometimes I get a kind of low grade fever too.
Posted 10/3/2013 6:00 PM (GMT 0)
I just used the toilet, and saw more blood than I've seen in years. That's it. I called my doctor and asked if I could come in today. I'm headed over there now.
Posted 10/3/2013 9:52 PM (GMT 0)
I saw my gastroenterologist today (after passing a scary amount of blood with an intestinal spasm). He's very, very good - associated with Mt. Sinai Hospital in New York (world capital for gastroenterology).

He took a blood test - my white count is probably to the moon, while my red count is probably non-existent. He doesn't bother with a sedimentation rate - mainly looks at white count.

He wants me to do a stool test for C-Diff, because he says this infection is getting more and more common when people flare. I hate stool tests. Playing with my poop is not my thing.

I dread Prednisone because of the weight gain and moonface (I also can't afford more bone loss), so we're looking at two possibilities. The first is a new drug called Uceris, which is a steroid that is only absorbed by the bowel, but is so new that many insurance companies won't pay for it. He's going to try to get approval for it from BC/BS. I can't pay for it otherwise - he said it's $1000 or more.

If BC/BS won't pay for the Uceris, I'll get a Remicade infusion (which costs 3x more than Uceris, but BC/BS will pay for it - they're not too bright over there). He gave me another TB test (necessary before Remicade), and I have to get a chest x-ray tomorrow (double check that I don't have TB). He said that when you've had a Remicade infusion, then no infusion for a long period of time, it doesn't always work again. (My last infusion was in 2009.) I sure hope it works!!

In the meantime, he gave me a Dosepak prescription, which hopefully will do something.

Here's some information that's relevant to others here:

Delzicol looks like a pointless capsule around an Asacol tablet, but the capsule may not be pointless. He thinks that one of the changes may be the tablet coating, and without the capsule, the drug may not be absorbed properly - i.e. may not make it to the large bowel so it can be absorbed there. He's not 100% sure of that, but he thinks I should not experiment with it when I'm so sick.

I agree. I'll research it some more, but for now, I'm putting the tablets back in the capsules before swallowing.

That's all for now. Thanks for listening. confused

Posted 10/3/2013 9:56 PM (GMT 0)
Maybe he should have switched you to Asacol HD. Can't remember if we talked about this before or not.
Posted 10/4/2013 4:47 AM (GMT 0)
I tried Asacol HD some years ago, and it didn't work for me. It's a completely different drug.
Posted 11/9/2013 1:22 AM (GMT 0)
I thought I'd post an update.

Nothing has worked - not Remicade (I seem to have developed antibodies), not Uceris (a new type of steroid absorbed only by the bowel), not the maximum dose of Delzicol, not all the various nutritional supplements (Aloe Juice, L-Glutamine, 3 types of probiotics including VSL#3, omega-3 fatty acids in the form of krill oil, etc.). My colitis is worse than ever. Today I started the dreaded Prednisone. There's no other option. I'm taking 40mg for now.

The last time I was on Prednisone I gained 20 pounds and got such a horrendous moonface it looked like 60 pounds. The way I make my living is helping people with emotional eating, so for me to suddenly look like I gained 60 pounds is very bad for business (besides being utterly humiliating). I have pictures of me from when I was last on Prednisone. They make me shudder.

I feel depressed and defeated, but I'm out of options. My doctor said that if I don't take the Prednisone, this flare could get "out of control", which I'm afraid means surgery. So I'm taking it.

This is the worst flare I've ever had, in the nearly 40 years I've had ulcerative colitis. If I didn't have a prescription for codeine to calm the spasms, I would literally never be able to leave the toilet. The pain is excruciating. My energy is low, I can't get anything done, and I rarely leave home. I'm in hell and miserable.

Thanks for letting me vent. :(
Posted 11/9/2013 3:23 AM (GMT 0)
My post to you might be as long as yours, so in advance to you and whomever else reads this, I am sorry. I do not have enough experience with this disease to give you right or for that matter wrong advice, I just want to share my story with you as some things in your story are VERY related to mine. And it might give you comfort to know you are not alone. There are a lot of people on this fourm who you will feel like understands everything you are going through and who will read your posts even if they're all just ranting and no actual questions, they'll reach out to show you there is someone on the other side of the keyboard listening to you. It's very comforting, that's why I continue to come here :)


As I was reading your original post, I found myself smiling and nodding. Not smiling in a happy way (dear God, NOTHING like that!!), smiling in an agreeing way because everything you said sounds like everything I think, everyday. Back in 2011, when I had c.diff; for two days of my symptoms I told no one. I thought exactly like you, if i tell no one, it's not happening; it'll stop. However, I was forced to tell someone something when my colon had become so severely inflamed that it had caused crippling pain to the point where I was unable to move off of the sofa to go to the bathroom. So instead of actually using the bathroom on myself (which i debated) I asked my sister to help me to the bathroom and ultimately had to tell her why i needed the help. Needless to say, I ended up in the ER, the worst one in the world, because they took some blood work saw i wasn't loosing "too much blood" and sent me home. The next day I went to a different hospital, where they took a cat scan and was told that my colon was so inflamed it was at risk of perforating. bags and bags of antibiotics were pumped in my IV and surgeons were met with in case during the night it did end up bursting. It was CRAZY!!! Thankfully, the inflammation did go down and then when the stool test came back positive for c.diff the antibiotics helped get rid of it, so no surgery. Obviously it was something that no matter how hard I tried to ignore it, it was happening and it wasn't going to fix itself. LESSON LEARNED!! Well, maybe. Okay, I didn't learn my lesson. In 2013 when I experienced my first UC symptom, which was a little bit of blood in the toilet and on the toilet paper and a slightly increased urgency, guess who I told? No one. "It's just something I ate, it'll go away" well, it didn't. It got worse, and one night I seen a scary amount of blood in the toilet and I freaked. I actually told someone again!! Awkwardly, I told my boyfriend. It was....well, awkward. We've been dating long enough to live together, but still in that "hey babe i'm going take a shower because I feel gross (but really because I need to poop and won't do it if you know I have to so I'll run the shower water so you cant hear me)" phase. You know, that AWKWARD stage. Well I was forced to tell him about the blood and I was crying and I was scared and I thought I had c.diff again and I thought my colon was going to perforate. Went to the GI dr the next day, had a colonoscopy the next week and low and behold, I had UC. Great. Was put on Lialda which stopped all UC symptoms and life was normal again, and me and my boyfriend were past the awkward stage. Free reign of the bathroom, YAY! LOL. Fast forward, Lialda caused pancreatitis, was taken off of that and put on apriso, which caused pancreatitis as well. I was taken off of that and in close contact with my GI dr as we discussed my next step in medications and BAM. My first real flare. Started as urgency, SEVERE spasms that made me dry heave all the time, 5-7 bm's a day, blood in every bm and the more i let it go, the weaker I felt everyday. Went in to the GI, he put me on Uceris. It did absolutely nothing for me. I did have about one day and a half of MILD relief but it just continued to get worse. Ended up at the ER one night for severe pains in my upper stomach, called my GI before I went and he told me to go directly to the ER because he thought it might be a pancreatitis attack again, but it wasn't. It just ended up being spasms from my colon. They gave me IV pain meds, cramp meds, and fluids then sent me home and told me to follow up with my GI. I continued to take the Uceris, and continued to get worse. Last week I made an emergency appointment with my GI because I was to the point where I was going to the bathroom over 20 times a day, always in pain, couldn't keep any food in, it either came right back up or went right through me. I was down to 76 pounds. I had been laying in bed for a month straight unable to get up because I was in that much pain. I needed help brushing my teeth, changing clothes, and taking a bath. I was literally wasting away to nothing. He wanted to put me in the hospital, I dreaded it because hospital ment prednisone and I wanted to avoid that at all costs. But he gave me the option to send me home for ONE night, but with prednisone as well and if I stayed the same symptom wise, I had no other options but to be placed in the hospital. So basically, there was no avoiding it for me. So, I picked the comfort of my home instead of being placed in the hospital to be picked and poked on all night, I wanted at least one more night in my own bed. I went home, took the steriods and slept all night. It.....was......GREAT!!!! The next day, took another dose, saw significant progress in my bm's, pain, blood, everything. The next day, not as good but still improving from the doctor visit day. Been on pred now since then and just had my first taper down to 30mg on monday and I keep getting better and better everyday. I love prednisone but my God do I hate it, with everything in me; all at the same time. Just last night, I posted on here very angry with it wanting to throw all of the pills down the toilet and surrender my colon, not because I'm not improving because I most defiantly am, but because of the side effects. It's hard for me to sleep and the appetite, OMG the appetite could have a fourm of its own on here!! It's the pill from hell and heaven all at the same time. It saved me from the dreaded hospital, it has in a very little amount of time given me back control of my life that I was wasting laying in bed every day in severe pain. In the past week, I've been out to eat, walk the track at a local park, and I've even started eating some of my favorite foods again. But, as we all know, steriods are not a long term medication and I will eventually be tapered off completely from them and will need to be on a daily medication to make sure(as best as possible of course) that this never happens again. I hate this disease, it makes me feel gross, it makes me cry and it makes me very very depressed. When I think about having to start trial and error all over again for a long term medication soon it makes me very upset because I don't ever want to experience what I experienced this past month. No, it is not the worst flare that has happened to anyone on here, it might even be mild compared to what some people had to or have to endure and that is devastating to me. But, I know how it feels and I don't ever want to be that low again and I'm scared they won't find me a medication that keeps this from happening again and in the end i'll have to give up my colon. It scares me every single day. I'm young, 22 years old, I haven't had enough "good quality" life to make a family yet, to finish college yet, to LIVE yet!! So i cry thinking my life that has already changed so much since august will change even more if my colon goes. But here, I feel so understood, there's people here younger than me that have this disease, older than me that have this disease, some with a colon, some "cured" of this disease because they no longer have a colon and they're living and when I see that I think to myself, "look at them, learn from them. don't give your life up for this disease! Be them, you will be okay, colon or no colon" it doesn't always help obviously but it still reminds me that I am not alone here. We all understand. We know. We might not have had the disease long as some people but everybody here knows this disease and we all agree on one thing, we hate it. Don't feel alone (well, try not to), come here everyday, post here everyday or just read what people post here. I am so sorry that this has happened to you after your year or two of remission and I pray that you find some relief very soon. Things can only get so down before they have no where else to go except up and I will pray that you get your "up" very soon. OMG, I have wrote a book here! Again, I am so sorry, but everything I said, I said it because I thought it related to your story and would maybe (hopefully) shed some light on the fact that you are not alone.



I hope it does not seem like I tried to hack this post by sharing my story with you, that was not at all in my intentions! Praying for you!!!
Posted 11/9/2013 4:25 AM (GMT 0)
ontheflipside - I want to read what you wrote, but the lack of paragraphs defeats me. Could you edit to insert paragraph breaks? Would be much appreciated, thanks.
Posted 11/9/2013 11:39 AM (GMT 0)
Hi Canopener, i am sorry that you are going through such painful experience and hope you will get out of it soon. I would suggest FT, so far it's helping me (i've done 10) but again i didn't do it for too long to advocate for it.
i have a question about managing the migraines, you said that magnesium and Vitamin B2 is effective for you how do you take it(togeter, after/before meals), what dozage? i have a friend who suffers terribly from it and nothing seems to help. thank you
Posted 11/9/2013 4:40 PM (GMT 0)
I had a solid 10 year remission by only taking sulfasalazine. Then for NO reason, it stopped working and I went into a severe 2.5 year flare. I tried all drugs available at that time, to no avail; nothing worked except prednisone which I HATED taking. I would have rather died then have surgery but I finally tossed in the towel. Twelve years ago I had jpouch surgery; best decision of my life! Happily medication-free and back to hiking, backpacking, and international travel. Surgery can be a blessing.

Sue
Posted 11/9/2013 7:52 PM (GMT 0)

suebear said...
I had a solid 10 year remission by only taking sulfasalazine. Then for NO reason, it stopped working and I went into a severe 2.5 year flare. I tried all drugs available at that time, to no avail; nothing worked except prednisone which I HATED taking. I would have rather died then have surgery but I finally tossed in the towel. Twelve years ago I had jpouch surgery; best decision of my life! Happily medication-free and back to hiking, backpacking, and international travel. Surgery can be a blessing.

Sue, you're scaring me. Your situation sounds very much like mine, and I'm still in the place of wanting to die rather than have surgery. I'm also unable to travel internationally. I went to Mexico once, and came back through Customs with a 102 degree fever and green liquid coming out of me - and I did not drink the water (I did eat fresh vegetables, though). People have told me it's just Mexico, but it's all moot at this point. I can barely leave my apartment.

The codeine stops the excruciating spasms in the morning so I can sort of function (it takes hours to fully calm down), but I'm tired all the time and not focusing well. I'm absolutely terrified of the weight gain and moonface from Prednisone (not to mention what it does to my bones). I'm being extremely careful about what I eat. I'm thinking maybe of following some sort of food plan until I can get off it, because it increases your appetite so much that you can't trust your body's cues. I really don't want to look like that again!!

Please don't say "pouch" to me right now. I can't cope with that. It makes me nearly hysterical. I'm trying to bring the flare under control. This has only been going on since September 23 (1.5 months).
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