Lots of issues / UC / Prednisone and otherwise. Really need general advice!

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Wavefunction
Regular Member


Date Joined Mar 2010
Total Posts : 123
   Posted 4/25/2011 5:53 AM (GMT -6)   
I've been having weird symptoms for months now, long before I started prednisone. I've been having problems as far away as a year and a bit ago. I've spoken to numerous doctors about it and have even made lists but unfortunately they just check the same stuff over and over again, tell me I'm healthy (aside from the UC which they do deal with) and send me on my way. I'm really trying to get to the bottom of this and find out what is what. I made a chronological list of all my problems in the past year. I don't know if these are related to UC or what but since UC is the only thing I've ever been diagnosed with, I'm going to start there. I put all the symptoms in bold:

August, 2010 :

Admitted to hospital for three weeks after suffering a six month long flare that wreaked havoc on me. Prior to the flare, I had also been suffering from heart palpitations (from stress?), very mildly painful urination (it's not an STD--I've been tested and have only had one partner) and I've constantly been hacking up phelgm for the past year and a half. There is more but these are the most salient issues I had dealt with up to being hospitalized. I've also been having panic attacks and anxiety issues.

The only meds I had been to up to being hospitalized were Asacol and the occasional enema. I was desperately trying to get the appropriate medicine but I was in Japan at the time and the doctors there didn't know what it was, so they often just sent me home and told me to get more sleep. It took me several months to find a doctor that would refer me to a GI specialist who put me on basic meds (6x Asacol per day--wasn't enough). I finally broke down and drove a good 200km to go to a hospital with a well known GI clinic. They admitted me right away and I recovered for three weeks.

Sept. 2010 - January 2011:

I was put on Imuran and Asacol. The Imuran didn't take (I had horrible joint pain) so I went down to just Asacol. I also took enemas regularly. I returned to home country (Canada) for three months during this period. I relaxed a lot and felt about 95% better with very little symptoms of any kind. Then I returned overseas and went back to work in early January, this time for a different company located in Seoul.

February 2011 - March 2011 :

I quit smoking in early February and began to have a horrible flare-up. Like, blood city. After a few weeks I sought treatment and was originally put on Pentasa enemas and I was taking 12 Asacol tablets a day. They had some effect, then I switched over to Steroid enemas and they made the flare up worse. I was having hot sensations (lower back and front), joint pains and I began to have muscle spasms. My right upper arm and left thigh would tense up and start twitching. It was painful. The GP said this was a deficiency so he put me on Magnesium and general multivitamins.

Quitting smoking gave me what I thought was a sinus infection. I'd cough up tonnes of green/yellow phelgm, sometimes with blood in it (from my sinuses and not my lungs). My nose was backed up for a week and then it cleared. I took tonnes of antibiotics (about a month's worth) and other medications to fight it. The medications here never come with names on them so I can't break it down for you, though I was on antibiotics of many varieties for more than a month. There was constant pressure around my temples, pain around my eyes, I had/have ringing in my ears, pains on the top of my head, pains in pretty much all my sinus cavities and god knows what else.

March 2011 :

The flare-up was still on going with lots of blood, so I went back to the GP and he referred me to the university hospital.

This time I saw a proper GI specialist. He put me on 30mg of Prednisone. It's the first time I've been on the drug. He also gave me what would seem to be a life time's supply of Salofalk 2mg enemas (I seriously have 15 boxes of the stuff).

The prednisone took affect right away. I started having somewhat normal poops after a few days and blood free poops after a week. My poops still aren't normal yet (and it's the end of April) but they're not bad either. A lot of it is my crazy diet becaues prednisone makes me eat like mad.

As far as side effects go, I had a headache for the first couple days, lots of food cravings, minor cheek swelling that no one noticed and tingling sensations on the top of my head and around my face. I wasn't sure if those were related to the sinus infection or what. The sinus infection was in full swing so I was seeing an ENT specialist and was put on two three-day courses of antibiotics and one five-day.

I started to have weird eyelid sensations and my eyelids began to twitch sporadically. I tried ignoring it but it kept going on. I thought it was the sinuses.

April 2011 :

Pretty much a continuation of March. I have my UC under control by prednisone but I honestly can't tell which of my current symptoms are prednisone, sinusitis/sinus infection, stress or god knows what else. I've been tapering the prednisone too. The doctor hates prednisone and doesn't want me on it for long. I started at 30mg, tapered to 20mg after two weeks, tapered to 15mg about five days ago and I'm going to taper to 10mg in a little bit more than a week.

Last Tuesday I went to the doctor on a day off because my eyes are getting weird. It feels like my eyelids are swelling a bit (not visible) and the corner of my left eye seems to be swollen... like it's extended. The corner of the eye looks like it's growing in towards the bridge of my nose and I can feel a bit of pressure/uncomfort there. Sometimes in the morning I wake up and my eyes themselves are reddish. I've never had eye problems before so I freaked out and went to the doctor.

I saw a proper ENT specialist at the hospital. He looked, sent me for five x-rays, then when I came back he told me that I'm completely normal sinus-wise and to my shock, that I don't have any signs of a sinus infection. He said that if they're not on the x-ray, I don't have them. He gave me a steroid nose spray and sent me home. That means what I thought were sinus infection related symptoms are not.

My eyes are still bugging me and my jaw is bugging me. My cheeks mildly twitch occasionally, as do my eyelids and my jaw feels as if I've been clenching the crap out of it in my sleep. I've been trying to relax it and it's getting better--once it was much better after a particularly good night's sleep, though since I haven't been able to sleep much I can't really fight it this way...

I should also add, on top of all of this, my new job has been so stressful that I actually put my notice in a month ago and I'm transferring to a new company early next week. I'm moving to a much quieter city and working better hours (I work 16 hours a day at my current job for six days a week and am lucky if I get more than 5 hours of sleep per night). Also, January marks the first time I've lived in a major city which means I'm not used to all the pollution and other things a major city does to you. I'm hoping that smaller city + more relaxed job + easier life will help some of these symptoms.

Anyway, I'd really like advice here. As I've said, I've seen tonnes of doctors and none can really help me. They usually just get puzzled and send me off because no single problem that I have is serious. I'm not in any major pain. Most of these symptoms are passing and temporary. Others are not (been suffering from heart palpitations for more than a year and painful urine for a year and doctors just ignore those symptoms when I bring them up though I must admit both symptoms come and go and I haven't had a bad heart palpitation in awhile).

Any advice is appreciated. I've had to turn to the internet. I used to Google my symptoms individually, constantly but since I've also been suffering from panic attacks occasionally over the past year, it hasn't helped. Thanks in advance.
Diagnosed in 2004 at the age of 19, however I knew I had UC since I was 16
No major flare ups until 2010 when I had to spend three weeks in a hospital
I'm currently on Asacol x9
Pentasa enemas and suppositories
Currently on Prednisone 15mg (tapered from 30)
I'm a lacto-ovo vegetarian and recently quit smoking

Post Edited (Wavefunction) : 4/25/2011 5:57:05 AM (GMT-6)


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 21761
   Posted 4/25/2011 6:37 AM (GMT -6)   
I get a lot of little things too and it is annoying as heck! Like you, no doc can tell me what is wrong but here take this pill anyway sort of thing. I do find that when my allergies act up, my sinuses go crazy. I am on allergy meds 24/7. I also clench my teeth at night so I use a night guard which was custom made at the dentist. It has helped tremendously - my jaw stopped hurting as well as my teeth and I don't wake up with a sore neck nor headaches.

I know high stress can cause havoc on the system, especially if it's already sensitive. Add in anxiety or panic attacks and it triples it.

Have you ever had a MRI for your head?
SHERRY
Moderator-Allergies/Asthma and Alzheimer's, Co-moderator-UC
~Left sided Uc-'92**Unable to tolerate ALL mesalamines**
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Wavefunction
Regular Member


Date Joined Mar 2010
Total Posts : 123
   Posted 4/25/2011 7:31 AM (GMT -6)   
Red_34 said...
I get a lot of little things too and it is annoying as heck! Like you, no doc can tell me what is wrong but here take this pill anyway sort of thing. I do find that when my allergies act up, my sinuses go crazy. I am on allergy meds 24/7. I also clench my teeth at night so I use a night guard which was custom made at the dentist. It has helped tremendously - my jaw stopped hurting as well as my teeth and I don't wake up with a sore neck nor headaches.

I know high stress can cause havoc on the system, especially if it's already sensitive. Add in anxiety or panic attacks and it triples it.

Have you ever had a MRI for your head?


Thanks for the quick reply.

I want an MRI on my head and my whole body! Unfortunately, every time I push for a specific treatment doctors in general seem to get a little bit touchy and they seem less likely to do that. Even when I exaggerate symptoms so I can get them going in the right direction it still doesn't seem to work. Unless I'm obviously damaged, they don't seem to want to do more than an
X-ray.

kazbern
Veteran Member


Date Joined May 2010
Total Posts : 6414
   Posted 4/25/2011 11:08 AM (GMT -6)   
Wavefunction, please don't "exxagerate symptoms" to manipulate your doctors. They are not stupid, and perhaps they see through that and then don't believe the things that are really true.

That's not to say that you're feeling great. The little things can really be annoying and diminish your quality of life without any DR feeling that they're important to treat.

Here's one comment about jaw pain - I was told by a dentist when I was 22 years old that I needed a night guard because of how I was grinding my teeth. Heck, I had no idea I was grinding my teeth! I complained to my parents about this wacko dentist and my mom said, "oh, honey, you've been grinding your teeth since you had them on top & bottom!" HUH? So I got a night guard and IT CHANGED MY LIFE. No joke. I still can't chew gum (hurts my jaw) but I sleep like a baby and never wake up sore.

Once when I was in a terrible IBD flare I had joint pain everywhere. Even in my jaw. That totally sucked (haha, no pun intended). Prednisone was the only way out of that dilemma.
*******************
48 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (3g/day), Sulfazine (1.5 g/day), Prevacid, folic acid, vit. D (2K iu), flax seed oil (2 tsp/day), mesalamine enema as needed.

BabeintheWoods
Veteran Member


Date Joined Jan 2010
Total Posts : 2065
   Posted 4/25/2011 4:32 PM (GMT -6)   
"Over 100 disorders known as extraintestinal lesions (EIL) constitute a diverse group of systemic complications of IBD". The most common EIL in adults is arthritis in about 25 percent of patients. Skin lesions are also common. Serious liver disease affects about 5 percent of patients. Inflamed blood vessels and inflammatory eye manifestations (episcleritis, iritis, and uveitis).

I was one of the lucky ones with crippling arthritis in my knees, ankles, elbows, wrists and hands. I also had serious eye inflammation and skin lesions. You forgot to mention weight loss. I lost about 5 pounds a week for a total of 50 pounds.

The good news is that all these IBD complications immediately disappeared as soon as my flare ended. I don't know if all your complications are from UC but I bet at least some of them are. You should research EILs to see if there is a match.

I quit smoking in early February and began to have a horrible flare-up.

This is very common for people to get UC symptoms when they quit smoking. Your doctor may shoot me for saying this but why not try some nicotine lozenges or e-cigs to see if it helps your flare? You can look up threads on this forum by others who say nicotine helps mitigate symptoms. You still will not be absorbing toxic smoke and all those carcinogens into your lungs. I also recommend ending the nicotine as soon as you experience relief. Nicotine, along with prednisone, probably should not be taken long term.

If your doctor already believes you have some nutrient deficiencies then also look into supplementing with fish oil. Supposedly it helps with panic attacks.

The doctor hates prednisone and doesn't want me on it for long.
I like your doctor. I wish I had a GI who didn't try to prescribe pred like candy.

You are taking many antibiotics which I guess is OK. I took a 3 week course of Flagyl that jumpstarted me into remission. So I know they can be effective. But you should not take them for too long. They kill both the good and bad bacteria in your gut and many members in this forum are convinced that is how their UC got started, with antibiotics. They are probably right. If you are going to take them then please, please also take probiotics. S. Boulardii is a probiotic yeast that will not be killed with antibiotics so can be taken with them. Also take generous amounts of other probiotics. If not the old bad bacteria and new worse ones like C Diff can readily take over again in your gut and make your problems much worse.

Check out the threads here. You will find that probiotics are the most popular supplement we take.
Male/59 DX ulcerative colitis Feb08, possible Crohn's colitis DX Mar10.
No Meds, allergic to Mesalamine. Remission since Mar10. Food journal instead of SCD. Psyllium seed mixed with VSL3 especially helpful.

Boswellia, E. Coli Nissle (Mutaflor), turmeric, fish oil, S. Boulardii, resveratrol, multivitamin, extra D3, K2, C, high gamma E, magnesium, phos choline, glutamine. Lots of fruit & vegetables(but no plums or kale), no soda, no HFCS, no trans fat, no shellfish, tea instead of coffee, watch gluten, few processed foods, no carrageenan.
Nature created all of the locks, therefore Nature has all of the keys

Wavefunction
Regular Member


Date Joined Mar 2010
Total Posts : 123
   Posted 4/25/2011 6:00 PM (GMT -6)   
Thanks for the advice, everyone. To be honest, I was really scared someone was going to reply and say: "this isn't related to UC--we don't know what's wrong with you" which would make me feel really upset. Hearing that other people have had at least some similar experiences means a lot to me.
 
[quote]Wavefunction, please don't "exxagerate symptoms" to manipulate your doctors. They are not stupid, and perhaps they see through that and then don't believe the things that are really true.[/quote]
 
I've had some pretty stupid doctors, actually. Before I got sick I thought you had to be relatively intelligent to go through the steps to become a doctor. I don't feel that way anymore.

In my OP I mentionned about one of the doctors I saw that had no idea what Ulcerative Colitis was. He told me it was just stress and that I could sleep it off. When I protested and tried to explain he just shut me off and repeated the same advice. While he was the worst, I've had quite a few other doctors that weren't all that much better. With those kinds of doctors then yes, I manipulate them. I have to. I've exaggerated symptoms before because I knew I needed a certain kind of treatment/medication and I knew I wouldn't get it unless I exaggerated. With a good doctor I'd never in a million years do that.
 
[b]Babeinthewoods[/b]: Thanks for all your advice. I've heard a lot about probiotics too but unfortunately I don't know much about them.
 
I'll ask my GI about them next time I see them. He wants to put me on Remicade eventually and I might ask him to put me on probiotics instead to help bridge the gap between Prednisone and Remicade.
 
How did you treat your eye inflammation? I'm afraid that's what I have now. It's becoming noticeable and I'm worried that it can become serious if I don't get it treated... can it?
 
 
Diagnosed in 2004 at the age of 19, however I knew I had UC since I was 16
No major flare ups until 2010 when I had to spend three weeks in a hospital
I'm currently on Asacol x9
Pentasa enemas and suppositories
Currently on Prednisone 15mg (tapered from 30)
I'm a lacto-ovo vegetarian and recently quit smoking

BabeintheWoods
Veteran Member


Date Joined Jan 2010
Total Posts : 2065
   Posted 4/25/2011 6:11 PM (GMT -6)   
Eye inflammation is very serious, you need to get it checked out. My eye inflammation ended when my flare ended along with all the other symptoms.

There are many threads here on probiotics. VSL#3 is one of the most popular brands and can be bought OTC with a lot of money or prescribed by a progressive doctor and paid by insurance.

Wavefunction
Regular Member


Date Joined Mar 2010
Total Posts : 123
   Posted 4/25/2011 6:20 PM (GMT -6)   
Who should I see about the eyes? Opthamologist? I've never had problems with my eyes in my entire life so I'm not sure.

kazbern
Veteran Member


Date Joined May 2010
Total Posts : 6414
   Posted 4/25/2011 7:54 PM (GMT -6)   
Eye inflammation is for an ophthalmologist. A good optometrist might be able to deal with it, but my guess is they'd just send you to an ophthalmologist anyway.

Probiotics are not an anti-inflammatory medicine, and while they might help address some digestive issues they won't reduce inflammation or manage the autoimmune response at all. Are you still using the Asacol and rectal meds while you're on the pred? Hopefully they'll keep your IBD under control when you're done weaning off the pred.
*******************
48 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (3g/day), Sulfazine (1.5 g/day), Prevacid, folic acid, vit. D (2K iu), flax seed oil (2 tsp/day), mesalamine enema as needed.

Ugh Just Ugh
Veteran Member


Date Joined Jan 2010
Total Posts : 1004
   Posted 4/25/2011 9:44 PM (GMT -6)   
That happened to my eyes when I was on pred. It looked like they were swollen and they itched. I did have my ophthalmologist check them out and she said it was fine. Try to lower your salt intake and make sure you're getting enough potassium in your diet!

Wavefunction
Regular Member


Date Joined Mar 2010
Total Posts : 123
   Posted 4/26/2011 2:14 AM (GMT -6)   
Thanks for the advice everyone. I'm in the way back from the GP now and he put me on some anti-inflammatories for the eyes/jaw. Hope that will help. If it doesn't he told me to see a dentist and then a opthamologist in that order. Wish me luck.
Diagnosed in 2004 at the age of 19, however I knew I had UC since I was 16
No major flare ups until 2010 when I had to spend three weeks in a hospital
I'm currently on Asacol x9
Pentasa enemas and suppositories
Currently on Prednisone 15mg (tapered from 30)
I'm a lacto-ovo vegetarian and recently quit smoking

Onchino
Regular Member


Date Joined Dec 2011
Total Posts : 33
   Posted 12/4/2011 11:59 PM (GMT -6)   
Hey, wavefunction i just posted about a lot of the same issues. please check out my post I made. I am waiting to receive blood tests back this week. I'll let you know what happens.

allswell
Veteran Member


Date Joined Oct 2011
Total Posts : 654
   Posted 12/5/2011 1:34 AM (GMT -6)   
Not a good typist, but a lot of that sounds familiar and I do think it could be stress related. I think when you are sick a person can start to notice every little feeling and worry. I think that's what happened to me. Be prepared when you come off pred. It can give you some weird feelings, head wise it did for me. I've had eye twitch, clenched jaw and heart palpable. The heart thing just started again but I have those again and seems to have started when I teed Apriso again, so I am wondering if Theres a Asa med connection. See you've come to the right place. My kids and I all have colds though and I wonder sometimes if that can make heart skip a beat, then again sometimes I notice during a bowel movement. I need a cushier seat , still flaring ugh
proctitis 2004, Asa sup., 2006 hydrocort sup. worked for a while when I remembered to use them, 2009 spread to left put on prednisone, asacol, then Apriso. Switched docs tried lialda, rowasa, back to hydro enema and Apriso. 2010 6mp added, 2011 pancolitis ,Remicade, bad flare after no.1,2, pred now, and rem
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