Hi, I need help. I cant find answers. I think Im in trouble.

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houseguest
New Member


Date Joined May 2009
Total Posts : 16
   Posted 5/30/2009 4:02 AM (GMT -6)   
                Hi, Im new here and a bit confused. Im not getting any help and I could use ANY advice. Ive just barely come out of a scary bout of what is belived to be UC. Im still scred though Im tempoarely better.
 
about two and a half years ago I started having back pain, joint pain, Iritis, and other wierd problems. Im a young strong guy and I feel like Im falling apart. Then they also diagnosed my with fibromyalgia, but Its seems different. The thing I hate the most, seems to be UC. In the long run, its all weird, and its all getting worse with time. And Ive had almost no help, I cant find answers.
 
No complete diagnosis from my rhuem. I was offered methatextate or whatever. But I never started it yet as my grandma who has rhumitoid arthritis died from cancer after taking it for ten years, I fear liver damage after seeing what people with it have been through, and Im sensitive to some meds. So I dont know if this is what I should be doing. What if I take it and droping my immune does more damage than good.
 
about the possible UC. I once and a while would have weird, bad, scary urges to go about 5 or so years ago. Bad, scary, scary urges. Ive barely ever been constipated. Not the other, until recent. This was at first just Once in a while, mainly only when I was staying at my parents place. NOW, in this years its progresed to no longer going solid, and craps more frequently. At times very freaky, who wants to go to the ER for that? And Im on the public aid card. 29 and what kind of job can I have.
 
Anyways, I have bad craping, bad erge's to go. Lately I never go solid. Ive had like, puss, and clear fluid with the troubles. Ive told my GI nurses and practitioner. They just so, ok.  They gave me two pro biotic samples. The vsl#3 one a day helped, the other wasnt. The When I was of the Vsl3 and on this lesser one. It got bad, like before, or worse. Im thin, I eat quite a bit to barely keep up my weight.
 
For these last very frightening, too real two weeks, I could barely eat, cramps lasted much of the day. And I was very sic fealing, even nausious. I was thinking, possible cancer too, and death in months. It felt nuked in my guts. I cut back on wheat and milk, and eat some. I was given more vsl#3 and some fiber. I droped ten very vital pounds. I have an ultra fast metabolism, and extrme low blood suger, as some part of it. When in goo shape, I eat like a pig to keep up with my 160 average. And Im still to thin. Im like 6'1. Thos year Im losing the battle. I cant eat like I did. Those two weeks, some days I didnt eat, other days I barely.
 
Ive gotten much better, for now. Thank god. If this keeps up, I will die, most horribly. It  was bad. Im sure it will be worse.
 
I dont know how to afford the VSL3, but I cant go without again. Its a serios medicine. I even went solid,1 day the other day. I took two the day before. My fist docs, thought I had ankylosing sponndilits, UC is a symptom. And other things I have. But I at times feel like I have something wrong all over. Like some collegen type, conective tissue disease. Like Im falling apart all over.
 
The UC or whatever has been the scariest. That last bough had me thinking it was going to never stop, and I was soon to bite the dust. I wish I new more about methatextate. Is it worth it, does it help UC, I was offered it for the iritis.
 
I also had some stomach issues.
 
I was stressed bad in school and had ulcer type problems. Pain. Ive had in the past, weird intolerance to alcohol, and Ive thrown up when I havent waited and hour after eating before bead. These days my upper stomach is good, unless I quit taking my 300mg zantac, drink dark soda, or decide to drink alcohol. Banans also use to cause pain. I recently had my firts upper GI scope. Scared to all hell. They saw nothing. And I was given a crude attitude. Dont worry so much. And the doc was crude, short, and expected me to understand and rmeber him while still, very, very daised.
 
I was angry, I said Im still having problems, that are down right scary at times. Bad cramps and such. They werent worried. I told them Ive even had blood, and black stool at times. One negative stool test, and that made up their minds, nothing there. Its to bad my name isnt tom cruise, donald trump, or obama. People just dont care if your not important. Its cold. Im never like that.
 
They scheduled a later apointment. And they gave me some samples. I too. I go back to see the other doc, a lady one on the 15 of june. I fear the colinoscope, but I wish I had some proof. These docs arent taking me serious, about any of it.
 
So friends, please any help could save me, and help me spend more days with my kids, who dont have a real mother. And are going to be growing up in a rough world. Im the only wise and world smart person in the family who could get them to suceed of do well at something.
 
Im sorry about my gramer, I havent used computers much and I have a little glitch, like dislexia or such. I realy strugle hard with that. I have to look at one word six times to see it right. Im still pretty freaked. And not meuch else cares me. I realy apreceate anything, and info or advice. Thanks. Sincerely, Lee

houseguest
New Member


Date Joined May 2009
Total Posts : 16
   Posted 5/30/2009 4:17 AM (GMT -6)   
I forgot, I havent had the feared colinoscope, But I think its coming, Yikes. It doesnt sound like my idea of a good time. But Im thinking they would have to see something. I wish they would use this pill cam I heard is out there. I greatly fear the thing they use to clean you out for the procedure. I here its rough. my cramping is most brutal. Even 20 mg of bentyl wasnt holding it back enough when I was bad about a week ago.
 
So my questions, are the immuno supressants worth it, do they cause worse probs. Does it sounds like my symtpoms match. Some bloating, cramping, I have for many months stoped going solid, with more cramps. Reguals other water like stuff, some puss. IBS.
 
Is do any others have other auto immune stuff, is UC all from the immune sytem.
 Anything, Il take any info. Im on a mission to save myself here. The doctors arent being very informative of helpfull. I think you real people who know are the best bet.

Post Edited (houseguest) : 5/30/2009 3:24:20 AM (GMT-6)


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 5/30/2009 6:42 AM (GMT -6)   
Do not be afraid of the colonoscopy. It's a breeze because they will most likely put you out. The prep is no fun and you will be running to the bathroom ALOT but the actual procedure is easy as pie :) But this is the most sure fire way to find out what is going on with you. To me it does sound like an IBD but I am leaning more towards Crohn's disease mainly because you mentioned ulcers in the stomach. You also have arthritis issues which can be correlated to having an IBD. Some people have their arthritis show up first and then comes the IBD but it's one of those things - what came first, the chicken or the egg. Either way the IBD has to be dealt with. So when you have your scope and you are diagnosed with an IBD, there are much more milder medications to try before resorting to the immune suppressors. These are usually reserved for when all of ther mainstream medications have failed. Please come back and let us know what happens after the scope ok?
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
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princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 5/30/2009 11:37 AM (GMT -6)   
It's not uncommon for folks with UC to have joint problems, fatigue and other immune-related problems. The opposite is also true: folks with arthritic problems often have digestive issues, etc. It's all interrelated. Check out this story of a doctor in the Atlanta area that healed himself of UC and rheumatoid arthritis:
 
http://goldberg.getwebspace.com/doctor.html
Diagnosed with ulcerative colitis spring 1999. Have been in remission for years with only a few minor blips.
 
Maintenance dose sulfasalazine. Probiotics, vitamin D, fiber supplement and fish oil caps. George's aloe vera juice and l-glutamine for gut healing. Mostly grain-free and dairy-free low carb diet.
 
 


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 5/30/2009 1:31 PM (GMT -6)   
Make sure they do biopsies when they scope you...also try not to freak out because stress really makes IBD and IBS flare.

Hope all goes well.
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4/2)
Corti Foam p.m. 3-4X per week
Curcummin and Probiotics/Rueteri.
Bowel Soother and IntestiNew, Fish Oil, Calcium/Mag/Zinc, Multi Vitamin and Melatonin
Eliminated Fructose and Corn Syrup
Could never tolerate artificial sweetners
I try to excersice/swim daily
Did I happen to mention I HATE this disease!!!
 
*Recent Changes In Blue*


houseguest
New Member


Date Joined May 2009
Total Posts : 16
   Posted 6/2/2009 3:37 AM (GMT -6)   
Red 34, princesa, and BBC. Thanks, Im going to remember/look into all of it.
Pricesa, Im going to study this stuff a bit. I feel like doctor goldberg in the left pic. Not cool. We thanks people I realy apreceate it. Any other info, anytime is great, thanks. much!

saposs
Regular Member


Date Joined Nov 2008
Total Posts : 339
   Posted 6/2/2009 4:41 PM (GMT -6)   
Do not get stressed, it's bad for UC. Get the colonoscopy done....that will tell you what your problem is.
Right now -FLARING (after my Rubella vaccination)
Diagnosed in Jan'2009: Canasa suppositories 1000 nightly - worked for 2 months then re-flare
13 may: canasa 1000 X2 daily for 2 weeks - to start Lialda after 2 weeks if canasa double dose does not work
Symptoms: Mucus, blood, constipated (not always), Lots Gas
Also gifted with Hypothyroid & have calicum deficiency family history!
Also started Probiotic from 23 Mar & fresh Turmeric root from 25 March'09- stopped both on 10th May


rpb09
New Member


Date Joined May 2009
Total Posts : 3
   Posted 6/2/2009 5:40 PM (GMT -6)   
I don't think it could hurt for you to try a gluten-free diet. It's possible that could be causing some of your symptoms, even though it sounds like you also have Chron's or ulcerative colitis. The colonoscopy drink tastes terrible but the procedure is easy and painless. You should start doing yoga or meditation to help your stress and keep taking lots of probiotics. Most importantly, keep a positive attitude and don't allow yourself to feel angry. It won't help.

Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 1202
   Posted 6/2/2009 5:55 PM (GMT -6)   
If you can't get the VSL3, another probiotic from a health food store might help. Sounds like you will need medicines quickly after the colonoscopy. Get that first, yes, with the biopsies. Sounds like UC/Crohn's to me too. Connective tissue disease like Lupus is also possible. They will probably put you on a steroid asap---sounds like you need it. Some antispasmodic might be prescribed too. It will all help. Methotrexate or 6mp may also be prescribed, but I'd imagine the Predisone would be first. Rectal enema's next.
Stay hydrated, even if you cannot eat much. Try Ensure and/or Gatorade for protein and calories. Try a bland diet--BRAT will help a bit. Keep reading the forum here, and hang tough---it will get better.
Daughter,15 diagnosed 1-08 w/ UC .
Previous drug sampling: Asacol, Prevacid, Flagyl, Prednisone- 50mg to 0, 4 major flares '08.Hospital four x. Low residue diet,
6MP, Colazal , Cortifoam enemas,
Trying probiotics, Niferex, fish oil, Magnesium, Acupuncture.
Remicade 10mg per kilo@ 8wks, since 10-08. Still on 6mp and Colazal


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 6/2/2009 7:47 PM (GMT -6)   
Well the good thing about the colonoscopy is the wonderful drugs you get that make you forget everything that happened, lol.

Make sure whatever they prescribe you that you get a script for some rectal meds (If you have UC that is). It will address the inflammation directly instead of taking the scenic route to get there.
Proctitis DX 1999, Pancolitis DX 2008
Golimumab study (100mg every 4 weeks)
L-Glutamine 5000 mg + 600 mg pyridoxal alpha-ketoglutarate
Probiotis/VitD3 5000IU+Ca/1000mg DHA


storysinger81
Regular Member


Date Joined Jun 2009
Total Posts : 82
   Posted 6/2/2009 11:15 PM (GMT -6)   
I'm so sorry to hear of your troubles. I'm only newly diagnosed with UC myself, but my mother has fibromyalgia and it SUCKS. It is also an auto-immune disorder, so I'm sure it's possible they're related.

I HATED the colonoscopy prep, but the procedure itself is fine. Yoga, as another poster suggested, is the ONLY thing I've tried so far with consistent, obvious results. Love it!

houseguest
New Member


Date Joined May 2009
Total Posts : 16
   Posted 6/3/2009 3:00 AM (GMT -6)   
Thanks you guys. In a world full of attitude, coldness, and unfriendly behavior, thanks for treating me so well, and thanks taking time to help me. All of it has been very informative and Im for sure it will most definatly help me.

The thing I fear most about the scope, is the prep. I heard the drink kicks in the IBS symptoms big time. There are times where my cramps have scared me to death. Ive been on the T and thought I might have to call the ambulance. The flairs were scattered before. But now everything is getting more frequent and worse. I hope I do get some real meds. I have awfull Iritis pains, body pains, all sorts of crap. The one thing thats the worst, that also scares me the worse, is this IBS and UC or crohns.

Saposs, thankyou. Ive lived a very, very stressfull life full of insane events. I real and being 100% true when I tell you my life my life has been totaly insane and full of events. Its been more crazy than an insane movie. 99% of you would not belive my life. IIm only 29, and I feel very very old. Like a person who has been around a long time. I will most definatly try, and Im going to re-arange my life to help. THANKS

RPB09, I actualy tried cutting out most gluten recently one I saw that things are getting scary. I mostly did this because of my mild posotive S cerevisia IGA. Though my upper scope didnt see any celiac, I thought I might try it. I know mikk is some touble, or more. Its sucks, Im very thin and I use to use those two groups to help keep my weight up. Yoga ha?? My life is WW2, but Im sure your 100% rught and im going to do everything I can to avoid the bad. I can get very, very angry. But Im still a nice guy. I guess its only hurting me and not helping anyways. Im going to be a little more gahndi. lol

Katmom, I was started on VSL3 weeks ago. Just one a day. It seemed to help, I ran out of the sampled and started on this other. It was bad, the cramps came bad. The D got worse. Then I had the two weeks that made me fear for my life. I was then given a free bottle of VSL#3 by the GI, I barely ate and when I did I avoided wheat and milk. I got better and even when solid like normal again for two days. One or some of those actions totaly saved me. I decided Ill do whatever to get that 40$. Side work or whatever. I think everyone should try it. Its amazing.

Katmom-countinued. I feel like I have lupas at time as I seem to have some probs all over.
Im actualy on bentyl, I was given it in the past and never took it till recent. It helps, but when its realy bad, itsbarely hold the beast back. Even 20 mg. Scary times. I have most definatly not been drinking enough. Im sure that hasnt helped. Very good idae. Im going to buy a surplus of fluid tomarrow. Brat diet? Ill check that out.I turned down the metho for my iritis almost a year ago. Now Im changing my mind. Thank you!

DR-A, I certanly hope so. lol. I was like wasted after my upper scope. It was actualy quite refreshing. Ecpt for the GI doc being short with me, telling me stuff fast, that I could barely remeber because I was so messed up. So when I saud, what, you didnt see anything. He was not happy to repeat and said I worried to much. Right, Ive had blood in my stool and black stool in the past. Scary IBS, past ulcer type pains. I cant drink dark soda, or alchohol. My stonaoch had been quite bad. I wonder why I might worry. Duh. Soon I see the other doc at the office. He was very unfriendly. And I was shocked they didnt see anything. I use to have stomach pain quite too often. rec meds, Ill take anything but the problem. Thanks DOC !

Stroy singer! Hey, do you actualy sing, Or is that just a cool name. Here is something stange. Im a musician, I play guitar, and bass. I also sing some. Classic rock, hard rock, some not so brutal metal. I find when I do sing here and there. That if I sing hard, like with power. It realy kicks in the IBS later and also brings about the destoyed gut fealing. Wierd. Ive vowed to stop for good, its that bad.

Its crazy, I guess UC can come with auto immune stuff and so can fibro. There is someone around here with MS and IBS. I can recall f it was IBS or crohns. I was suspected of having ankylosing spondylitis, it comes with UC, and my other probs and some people have fibro with it as well. But then crones fits my symptoms too. Irits, arthritis type stuff, IBS. Its a nightmare to diagnose. Ive been nagative for most rhumatoid test. Though many are not totaly effective. And people have lupis, arthritis, spondylitis, and test negative for the usual test.

Im afriad the colin scope prep will send me the the ER. I heard its brutal, so is my IBS. Not cool.
Yoga, wow. thats twice. I never would have though about that. Ive gotta try it. Im stiff so Im sure I need it. I use to me in martial arts so it shouldnt be too alien to me. Thanks.

Thanks people, I realy apreceate this. You all are great people, that rare these days. Thank you.

Hellokitty
Veteran Member


Date Joined Mar 2009
Total Posts : 765
   Posted 6/3/2009 3:02 AM (GMT -6)   
To me it does sound like IBD. I had a scope when I first started complaining about mucus. I didn’t have blood at that time. The doctor said he saw nothing and closed the book. I still didn’t feel right. 2 years later I started to have blood. I went back and forth to the GP. All they said was that I had hemmroids. They told me there was nothing wrong with me and that they will not refer me to a GI again. I was also told I was too young to have any illnesses. I was 28 years old, can you believe. I finally paid private and they referred me on the NHS. I was then diagnosed with UC.

Don’t worry. I know its had to say that to someone who is. This web site is great. There are people who know about meds and diets that can help. I have really learnt a lot for these guys. I am having a bad week but at least I still am not having cramping, yet. There are different things you can try, to help.

I have already tried loads of things. And giving up gluten and dairy are so far is the best, It doesn’t mean that I will be without problems. I also have weight issues. Ive always been skinny. I just don’t absorb things as well as I should. And things get hard for me when I have a cold or flu. Like I have right now. To help relax listen to some music or listen to the birds out side. I know I worry about work too as I am off sick all the time at the moment, and I think I am going to lose my job. Keep in close contact with your family. If worst comes to worst go on disability. I know I am thinking of doing that some days. Your never out of options though. You will find what works a diet and meds that works for you.
Female 32 years old
 
Diganosed ulcerative colitis November 2007
Present medication- 1/2 X 500mg pentasa in the morrning= 250g pentasa (I reduced this to see how my diet will effect me) and 1 X250g Asacol every other evening
Diet- Tried raw food diet with 80% raw foods, found some pro's and cons. Started to add more products to keep up weight as mine did not balance. Still eating raw spinage and still am combination eating. No dairy No gluten.  
 
Other medical problems- Born with asthma- no medication taken for this.


Hellokitty
Veteran Member


Date Joined Mar 2009
Total Posts : 765
   Posted 6/3/2009 3:06 AM (GMT -6)   
Interesting: Are you dyslexic? I am, If you are then I may have some food advice for you. Strangely enough.

I have to type everything out on word before I post it. I read it at least 3 times before I send it.
Female 32 years old
 
Diganosed ulcerative colitis November 2007
Present medication- 1/2 X 500mg pentasa in the morrning= 250g pentasa (I reduced this to see how my diet will effect me) and 1 X250g Asacol every other evening
Diet- Tried raw food diet with 80% raw foods, found some pro's and cons. Started to add more products to keep up weight as mine did not balance. Still eating raw spinage and still am combination eating. No dairy No gluten.  
 
Other medical problems- Born with asthma- no medication taken for this.


houseguest
New Member


Date Joined May 2009
Total Posts : 16
   Posted 6/4/2009 12:35 AM (GMT -6)   
Hello. hello kitty. Dam, you sound like my female twin. lol Seriosusly. Ive never seen someone who's life and problems were so close to mine. I also dread the flu/cold. Viruses realy mess me up. And a feel realy messed up and wierd when they hit.

Sorry to hear that you arent feeling well, and that your job may be in trouble. Its sucks. Life definitly isnt fair or easy for any of us. Medical science is draging its feet and wasting its time with far less important things.

Dislexia sucks. I hate having to look at certain words over and over, as well. Ive always ben thin, but I now like you belive that the med problems are causing me to not absorb and strugle with it. Im lucky I still have some muscle, or I would look a little too thin. Im streached like a tall basketball player, but Im only 6,1.

Thanks so much for the advice and comments. You are awsome. I realy apreceate it.
 
I hope to talk to you again.

Post Edited (houseguest) : 6/3/2009 11:51:03 PM (GMT-6)


Hellokitty
Veteran Member


Date Joined Mar 2009
Total Posts : 765
   Posted 6/4/2009 4:11 AM (GMT -6)   
No problem. I just found it interesting that you were dyslexic as well. I went to see a homeopath. She said she is not surprised I am sensitive to food. A lot of children with learning difficulties are. The foods I found I am most sensitive to is Gluten and dairy. The other things I find I need to avoid are things with preservatives and E numbers, they are bad so too much refined food is bad. Although I had some gluten free toast the other day.

When I was young I was really sensitive to viruses. I used to get them worse than my brothers. I also used to get chest infections. When I grew older I found that my asthma settled and is not so bad now. But now in my 30ies I have got UC. I am again sensitive to all these things. darn it. I was doing well in my 20ties.

To get around the dyslexia thing I use word to type out all my posts. I love word. I have really encounter problems with being dyslexic in my life. I was held back in school. I used to read saw as was and visa versa. I even lost a job to it once. And im not telling you where because you will know the place, its famous. I lied and said my spelling was ok, to work in a wedding list department. I thought they would have word. No problem, Ive seen worse problems than mine. Big mistake. They didn’t use word it was an old fashioned system. Whops!! I was caught. Now I’m honest with dyslexia. I tell my employers.
Female 32 years old
 
Diganosed ulcerative colitis November 2007
Present medication- 1/2 X 500mg pentasa in the morrning= 250g pentasa (I reduced this to see how my diet will effect me) and 1 X250g Asacol every other evening
Diet- Tried raw food diet with 80% raw foods, found some pro's and cons. Started to add more products to keep up weight as mine did not balance. Still eating raw spinage and still am combination eating. No dairy No gluten.  
 
Other medical problems- Born with asthma- no medication taken for this.
dyslexia- found out that many people with learning difficulties also have food sensitivity

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