Hello...Ive just been diagnosed.

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FosterDad
Regular Member


Date Joined Aug 2007
Total Posts : 97
   Posted 8/17/2007 10:57 AM (GMT -7)   
Well....I would like to first say hello. I was actually posting in the IBS section on another site for the last few months. Now I know I was in the wrong site. Here is the quick and dirty on who I am......Below was my intro to the IBS board, but I figured its alot easier to cut and past it here rather than retype it. (ya ya...im a lil lazy)

****I don't know were else to turn. Im new to this site and am not sure if this is the right forum or not, so plz forgive me if Im in the wrong spot.

I am a 38 year old male who now carries an emergency nap-sack and a port-a-potty in the back of his truck. Approximately 12 years ago, I do believe I had my first attack after eating at Pizza Hut. In a matter of 15 minutes, I had to have my friend stop his car 3 times as he rushed me home. Since then, its gotten worse over the years. I always feel bloated/nauseous almost all the time. I am constantly looking for washroom signs or places to hide "just in case" I used to love driving around with my friends skiing, scuba diving, golfing and just going out and having fun....now I cant even drive with my wife in the car. If I even start thinking that I have to go anywhere with anyone I instantly feel more ill and have to use the washroom. Which makes it sound like I have now become the owner of a phobia....oh joy. I gave up lying to my friends and family about why I cant make it to family functions or why I cant go golfing with my best friend.
I have had test after test, sample after sample, and finger after finger done over the last 10 years...most recently, I had a colonoscopy at the end of Nov/06 and everything came back fine. All the biopcies came back fine. I am suppose to be a perfectly healthy 38 year old male. Then why am I unable to control my bowels. I know I have trigger foods, which I try and stay away from, but it just seems to be getting worse.

about 7 years ago, I went for a year of having NO junk...all health foods....no take out, chocolate, pop, alcohol, even my cigars with no cheating. It was all vegies, fish, rice, boneless skinless chicken, vegie burgers and NO BREAD. I went from 200 lbs to 148 lbs in one year. The symptoms got a little better but still hung around. Was a great diet.

about 3 weeks ago, I started taking "DIGESTRIN" to see if that worked, but have now stopped until I get this weird stuff under control. Has anyone else tried DIGESTRIN?

**CAUTION...GETS A LITTLE GRAPHIC....SORRY**

Normally, my attacks are very quick to come on (have less than 1 minute to get to a facility) and my BM is extremely loose and oily. I never feel like I have had a good evacuation and always feel like there should be more. (even though I swear I saw my shoes shoot out once) about a month ago I had an attack while working out in the yard, well actually 4 attacks in about 1 1/2 hours. Since then things have gotten a little un-nerving. I am having almost uncontrolable BM's, with unbelievable gas, that first started out being "D" but then turned to a mucus and now for the last 2 1/2 weeks have turned to mucus with some blood. Needless to say, I have been freaked right out, but when I went to my family doc yesterday, he didnt look concerned at all....told me to take 50mg Dicetel 3x / day for 1 week, if that doesnt work bump it to 100mg 3x / day. He said that there is nothing left for him to do and if this doesnt work then I get the joy of getting scoped again.

So....PLEASE, PLEASE, PLEASE. I am 38 with a wife and a 20 month old baby girl. I do not want to pass this on to my beautifull baby. (physically or mentally) If anyone can tell me anything that will give me any sign of hope, I would be very greatful. I just dont know what else to do, Ive lost my zest and really would like it back.****

As the above was writen a month ago, a few things have changed. After the "Dicetel" never worked and my symptoms presisted, I got to the point were I was not going to take anymore. After 3 weeks of my doctor's reseptionist messing up my referrals to get in to see a specialist, I finaly said screw it. I went out of my way to make my symptoms as bad as I could, (ended up losing 25lbs in 3 wks) went up to the emergency hospital twice in one week and finally on the second visit the oncall doctor tracked down a surgeon, who was actually in the O.R. The surgeon came in and talked with me,(after he was done opperating) talked with me for about 5 minutes and booked me in for an emergency colonoscopy. So, finally, after 12 - 15 years of being told that its all in my head and given anti-depresants. I have now been diagnosed with Colitis. Apparently there is suppose to be different types but all I was told by the surgeon after the opperation was that I have moderate colitis from the rectum to the transverse colon. I was told to start taking a medicaion called "Asacol" immediately.

It may sound silly but it feels like a HUGE weight has been lifted off my shoulders. At least "NOW I KNOW" Im not crazy and it wasnt all in my head. Now the healing can begin. So please, if anyone has any insight, opinions, experiences or anything that might help. I would love to hear from you. 
 
I would also like any opinions on medications.  What is bad, what is good.  Ive been told by my doctor that if the Asacol does not work, they are going to go to Steroids (probably Pregnasone) and if that doesnt work they are going to bag me. **YIKES*a lil nervouse**

Thanks, talk to you soon.

billo
Veteran Member


Date Joined Mar 2006
Total Posts : 545
   Posted 8/17/2007 11:03 AM (GMT -7)   
When I was first diagnosed the doctor put me on prednisone , usually thats the 1st thing the doctor will do, depending on how bad the symptoms are.

kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 8/17/2007 11:12 AM (GMT -7)   
HI and welcome to Healingwell! I'm sorry to hear how long and horrible your road here was but you are not alone. You are not crazy! Have a look through some threads and you will find yourself nodding in agreement and learning a whole lot. One thing to remember is that this disease is different for everyone and ends up being a lot of trial and error.

As for meds. Most of us are on asacol or colazal which are similar. Prednisone is what the docs like to do after that and you will find horror story after horror story about it. Many of them my own! But it is a love hate relationship many of us have with steroids. They do work for alot of people but it can be hard to get off of them, not for everyone, but for some. They also have horrible side effects. I am suprised your doc went straight for a bad after that...there are two more classes of meds to try...immunomodulators (immuran, 6mp, azatrhopine) and then Remicade which is usually the last stop before surgery. Surgery is an option for many though. If you want to learn more about what surgeries ther are try j-pouch.org...lots of good info.

I hope this isn't overwhelming you right now but I wanted to try to answer your questions the best I can.

Congrats on the baby! To ease your mind a bit the chances of passing UC down to children is low, under 10%.

This disease sucks and it can make you feel very alone. Just know we are here as a shoulder to lean on and a place to find personal stories and advice.
Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, Rowasa every other night, back to 30 mg pred.
Waiting for prometheus test to start Immuran
Prontonix once daily for acid reflux, zofran twice daily for nausea


Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 8/17/2007 12:14 PM (GMT -7)   
Hi Foster Dad -- welcome --- Kelly just gave you some good advice. If and when you can spend some time going through the different threads on this forum you will start to pick out some different things you might like to try. The most important thing is this is such a trial and error thing. What works for one may not for another.

The doctor will start you on one thing as he has to see how you respond to it. Unfortunately my husband and many others start out trying this and that before finding what seems to help. Some meds are not prescribed immediately because if you are lucky enough to respond to as little as possible all the better. Try to be patient and hang in there - also share the info with your wife so she can have a better understanding as this can be so overwhelming.

I am married to one of the calmest, easy going guys and this disease has taken its toll on his mood and personality (primarily due to the prednisone and out of his mind pain) and if I didn't have this forum to refer to I don't think I could have coped as well as I have with all the insight I get from here.

And yes it is great that at least you now know what you're dealing with. I wish you didn't have it to deal with as it is very frustrating, depressing at times and debilitating. Being honest with family and friends is so important - we haven't found a person yet who hasn't been concerned and so willing to try to help in any way they can. Hopefully it won't be too long and you will attain a successful remission.

60 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 ... left sided ulcerative colitis now & fully involved and trying to get in remission. Acute inflammation-pancolitis-tenesmus rectal pain-granulation is showing some healing started. Osteopena of spine from prednisone DX 8/07  July 07 starting to feel somewhat normal 75mg Imuran 40  mg prednisone (tapering 8/07) 12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 3X day, DanActive, chewable calcium, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 20 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Colocourt enemas at night.


therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 3533
   Posted 8/17/2007 12:55 PM (GMT -7)   

Hi

I can tell you I'm just starting to get better after having ALL THE SAME SYMPTOMS AS YOU! Hang in there. The asacol worked for me in as little as 6 weeks. Please if you're not taking fiber take it. I take straight psyllium which is a bulking agent without a laxative effect. The maker is NOW it's apple flavored power. In 3 days my stools became formed again.

I have a mild case of colitis and switched form asascol 2 years ago (went med free for a year) now on Colozal 4 a day. I tried doing it without medication and I had accidents everywhere I went! I've been on my new meds for 3 weeks and I'm confident I will make it to the toilet and more better, I'm not having the urgency. I'm 37. This just started for me 3 years ago after eating alfalfa sprouts that nearly killed me one night ( I didn't wash them and ate them raw on my salad, shame, shame) Stress made things worse for me.

You are not alone ever in this. I thought I was the only one until I posted here too. It will get better. Please try the fiber too!

Linda


I had the Rocephin shot and 2 weeks of Omnicef, this helped with my bloating and digestion. That was 4/15/07
Had Cipro and Predison for 10 & 5 days, 7/3/07
colonoscopy & Endoscopy 7/27, Left sided colitis
Colozal 4 a day
 
 


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 8/17/2007 1:09 PM (GMT -7)   
Hi and welcome to the UC club.......take your meds and hope that will work quickly for you!!! Your story sounds like my Mother's and I do have it but much, much, much less severe than hers (I have always been able to make the bathroom) I also worry about passing this to my children someday. So many people have things like this or their own things, I have become much more open about it and it really helps to come here and to talk about it.

I did not take my meds like I was supposed to and now I am, it has taken about 7 weeks but I feel almost out of my flare I hope in the next few weeks I will be back to my normal (1 to 2 bm's a day or every other day......fully formed, no extra's, ie. blood & mucous).
Beth, 31
 
UC Diagnosed March 2000
Asacol 400 mg 6 pills 2xday
Calcium and Vitamin D 600 mg 2xday
Lipitor 10 mg 1xday
Diovan 80mg 1xday (dx: hematuria w/proteinuria): I have normal blood pressure, this is for my kidney.
 


tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 8/17/2007 1:20 PM (GMT -7)   
Hey and Welcome! The first thing I want to tell you is there are alot of medications options that you can try before they "bag you." There are maintence meds (like asacol), steriods (pred), immune suppresents (imuran, 6mp) and then there is Remicade. Oh and don't forget all the rectal meds. Just wanted you to know there are lots of options out there before surgery.

Most importantly be dilligent about taking your meds! Alot of us, myself included, have gone into a flare b/c we stopped taking our meds. Keep us posted on how you are feeling.
Tabitha

100mg Azathioprine, 2 Fibercon, Colazal-9 a day (attempting to cut this down to 6 by slowly tapering), acidopholis pearls, just added Prilosec OTC

http://www.healingwell.com/donate
Co-Moderator UC Forum


Zurich
Regular Member


Date Joined Jul 2007
Total Posts : 49
   Posted 8/17/2007 1:25 PM (GMT -7)   
Hi, I'm also newly diagnosed and started on the Asacol.  I've been on it now for almost 4 weeks.  Was terrified of taking it because I didn't know what type of side effects there would be.  After four weeks I still can't come up with any side effects (not unless if I'm in for a surprise later on!). 
I think they either use Asacol or Colazal to begin with.  From there, they have a whole host of other drugs and I am sure more will come out as time go by.  Enjoy learning from this site.  I thought I was the only one in the world with colitis.  Usually when someone goes in for a colonoscopy and I ask them how it went they all say "fine - didn't find anything".  Let us know how you are doing as time goes by.  They say that the Asacol takes time to kick in.  I never really got the concept of it.  The capsule breaks down only in the colon and releases the medication.  So, you will be finding on occasion the capsule in your stools.  Sometimes I will see the white of the medication.  I always think, "how do you know that the medication from that little capsule is reaching the exact part of the colon or rectum which has the ulceration/inflammation?  So, I still don't quite get it ...
Zurich

FosterDad
Regular Member


Date Joined Aug 2007
Total Posts : 97
   Posted 8/17/2007 1:34 PM (GMT -7)   
WOW.....the feedback has been absolutely amazing here.  Thank you all for replying so quickly.  I have only been on my meds now for 3 days so Im still a little nervouse about all this, but the more replies I get the better Im starting to feel.  Im just really starting to miss taking my little daughter to the park and walking with my wife, but Im sure this will take a turn for the better soon.
 
Thanks again for all your support, my thoughts and best wishes are with all of you.
 
This is a freakin fantastic site.  Thank you KIM123 for telling me about it.

Dansky
Veteran Member


Date Joined Mar 2005
Total Posts : 2844
   Posted 8/17/2007 1:55 PM (GMT -7)   
Hey FosterDad,

I haven't managed to read all your post yet, I had neck surgery on Monday and obviously I'm a bit stiff to say the least hee hee, but I wanted to welcome you to HealingWell, I'm sure you have been given great advice already and within the next few days I'm confident I'll be moving my neck a little easier so more able to read your post :-)

Take care, come back often this is an amazing site and I assure you, you will get great advice.

Dave
Dansky Co-moderator UC forum
 TAKE FLYING LESSONS ON A MOUNTAIN BIKE TODAY!
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Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 8/17/2007 4:17 PM (GMT -7)   
Everyone has covered most the bases I see but I just wanted to extend a welcome your way and to tell you that if you should have any questions or concerns, please don't hesitate to ask ok?
 @--->--SHERRY--<---@
Left sided Uc since '92 - meds - Colazal, Canasa (when needed), 6MP (50-75mgs), Forvia, Biotin (IN REMISSION - sort of!)
Secondary Raynauds Syndrome '04  - meds - Norvasc
Fibromyalgia '06 - no meds
Severe seasonal allergies - meds - Allegra 
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Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 8/17/2007 4:33 PM (GMT -7)   
Foster Dad this is without a doubt a great site. It is so cool to have such a support group and network and not have to leave your house to go to meetings which would probably only be once a month or week and you will find no question is too silly or too embarrasing to ask. (Who could get to a meeting and sit through one while flaring anyway???)

If you can sit for any length of time at the computer and comb through the different threads you will find your emotions can run from anywhere to hysterical laughing at some of the topics and candid responses to getting lumps in your throat reading what so many others are going through.

But to know you are not alone suffering with this even though it doesn't make it any better at times you do find comfort of sorts. My husband is the one with it - I'm the one posting - I'm the secretary and he gets the Readers' Digest versions from me. It makes for alot of interesting bedtime conversations and I do alot of cutting and pasting of info for him to read.

He has a great doctor who is open minded and I have had a few suggestions from this forum that we have incorporated into his care. When we get to the Mayo Clinic in Oct we'll see what else gets added to the mix or taken away.

Too bad this isn't like an infection where an anti biotic could take it away. And it is also too bad that there are so many forms of it and the correct treatment for one may not respond for another.

Hang in there - hopefully after the meds have gotten into your system for awhile you will see a positive change.

60 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 ... left sided ulcerative colitis now & fully involved and trying to get in remission. Acute inflammation-pancolitis-tenesmus rectal pain-granulation is showing some healing started. Osteopena of spine from prednisone DX 8/07  July 07 starting to feel somewhat normal 75mg Imuran 40  mg prednisone (tapering 8/07) 12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 3X day, DanActive, chewable calcium, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 20 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Colocourt enemas at night.


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 8/17/2007 6:37 PM (GMT -7)   
FosterDad, welcome! I am the mom of a 16 year old with UC. She got sick in September 2006 and was diagnosed in October 2006. We didn't even know what UC was before that. Even after the diagnoses we just assumed it would take 2-3 weeks for things to get back to normal. Reality check! Anyway, this is an amazing forum and incredible people. It does take time to understand the different drugs people are talking about. Ask lots of questions. Post on the good days and the bad days. Try to find the best possible GI you can. I think that has helped my daughter the most. (This forum has helped me the most!) Speak to your doctor about adding rectal meds before you start prednisone. There is also steroid rectal meds. By the way, I haven't found anything on this forum that has truly grossed me out. If anything it has made me more aware of what people are truly going through.
I hope you are feeling better soon.
--Mom of bratcat (16 years old)--
bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday
Rowasa - 7/07 tapering slowly
hydrocortisone enema - alternating with Rowasa; 3/3 - began to taper off hydrocortisone sloowwly! No more hydrocortisone enemas!
11/14 - started prednisone; 1/28 - finished prednisone!
Keeping our fingers and toes crossed!!


Jjc2007
Regular Member


Date Joined Apr 2007
Total Posts : 194
   Posted 8/17/2007 7:14 PM (GMT -7)   
Welcome FosterDad

I know you must be frustrated. This is a literal pain in the arse disease. I know. I have lived with UC for 45 years now. I might be the oldest here and I have yet to find a person who has had UC longer.
Maybe it will bet me into the Guiness Book or something.

When I think back to the years that were the worse for me (for some reason my UC became less severe after I went through menopause), one of the worst things was the loneliness. I had wonderful friends and family who were supportive but quite honestly, it is the people here who get it more than anyone else.

This is the greatest place because we really do understand...the anger, the frustration, the guilt, the self-pity at times, and the need to talk to others who know exactly what you are feeling.
At 61, I feel the best thing I can share is that it is possible to have long periods of normalcy, and to get through the hard flare times without giving up. I was a class room teacher for forty years and somehow, even during flares, was able to survive. And I still substitute. And the first thing I still look for in a new building is the bathroom.

And everyone here has a great sense of humor about ourselves and the disease we live with. Where else can one go to talk about things like "wet f*rts" and diarrhea with strangers and KNOW they get it.

We will be here for you.
diagnosed with UC in 1962
regualr meds:
Asulfadine (500mg tablets, 6 daily)
Folic Acid
Zantac as needed
open heart surgery in 2005 for removal of aortic root aneurysm


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4034
   Posted 8/17/2007 9:19 PM (GMT -7)   
Hi FosterDad,

I just wanted to welcome you to the forum. I was just diagnosed in March and this site has been a great resource for me.

Do you have ulcerative colitis or just colitis? Ulcerative colitis is a chronic disease, but if your doctor told you that you have colitis, it may not be a chronic thing (although it seems like you have had symptoms for a long time). I don't know much about colitis, but I know it is different than UC and it can be treated with Asacol. Have you had stool samples taken to rule out infections and parasites? Usually, doctors do this before diagnosing you with UC. What dose of Asacol are you taking? You can list your meds in your signature if you wish.

I take 400 mg Asacol, 12 pills a day. It has helped me a great deal. It took about a week for the Asacol to start working and a few weeks until I started seeing more major improvements in my symptoms. I'm still not in remission, but doing a ton better than I was a few months ago. It is supposed to reduce our risk of getting colon cancer as well. Rectal meds like Rowasa are also an option. They are suspension enemas (you keep them in all night) of the 5-ASA medication. I was really scared to use the Rowasa at first, but it's not as bad as it sounds and they help a lot of people here.

Hope you start feeling better soon.
23 years old
Diagnosed with UC March 2007

Asacol 4 tablets 3x/day
Rowasa (generic) - 1 every few nights
Ultimate Flora probiotic (50 bil. cultures) 1/day; Chewable multivitamin; Stonyfield Farms yogurt

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