What is going on with me? Updated Advice please!

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Mercury28
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Date Joined Jul 2009
Total Posts : 170
   Posted 7/16/2009 8:01 AM (GMT -6)   
Hiya, i have had Ulcerative colitis for about 15 years now (I m now 28) I have never taken any medication for my colitis as i have had a real hard time dealing with actually having it , i have been trying to ignore it, but unfortunately it's not going away.

Anyway i have a few issues i would like some advice on if there is anyone who can help me?

My doctor has recently given me Asacol foam enemas to try, does anyone else use this treatment?

Lately my colon seems to be in spasm all the time, specially after i have eaten, i also feel sick and that makes me panicky, does this sound like Colitis symptoms or IBS? These symptoms have been really bad over the last 2 weeks, i have decided to just not eat as my bowels just wont stop going into spasm.

And finally i am extremely worried that for the last 15 years i have not treated my colitis, and therefore worried sick that actually i may have Colon cancer. How can you tell the difference between colitis and cancer without having to have a colonoscopy or sigmoidoscopy. is it likely that i would have bowel cancer at 28?

I would be very grateful for any advice, i am so worried about my condition. [img]/community/emoticons/confused.gif[/img]


Are you in the US? No the UK But moving to Canada in September!



Hope you feel better soon.
Ulcerative colitis for around 15 years (Im am 28 years old now)

15 years of untreated colitis

Should be taking Asacol foam enemas

Calcium for osteoporosis

My biggest concern BOWEL CANCER :O(

Post Edited (Mercury28) : 7/20/2009 8:38:08 AM (GMT-6)


kops2da
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Date Joined Jun 2008
Total Posts : 2865
   Posted 7/16/2009 8:43 AM (GMT -6)   

I would suggest that the only way you will know what is going on in there is for a good gastro doctor to look and see.  A colonoscopy is no doubt in order.

ElaineNY


 
Senior - diagnosed with proctosigmoiditis - 6/2008   
Cannot tolerate mesalamines.  New specialist (June) - Cortifoam and Anusol three times a day for now.  Hope it works! (finding it impossible to do three times a day however)
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


Sunshineonmyface~
Regular Member


Date Joined Sep 2008
Total Posts : 202
   Posted 7/16/2009 10:02 AM (GMT -6)   
I think you need to colonscopy too. BUT I think you are ok. I am not sure how long I had the disease either before I got treated. I know it was severe when it finally got diagnosed, and no lasting damage was done.

I have been under the grip of fear at times myself so I feel for you. I think what physically going on is rightnow not what you fear, but maybe happening as a little wake up call to get you going in the right direction.

fruitgirl
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Date Joined Feb 2009
Total Posts : 7150
   Posted 7/16/2009 10:09 AM (GMT -6)   
There's no way to tell if you have colon cancer without having a c-scope. However, I find it highly unlikely that you do. If you've had UC for 15 years, haven't been on meds, and have been able to function, your UC isn't that bad. I would have been hospitalized if I'd not gotten on meds when I was diagnosed.
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Apriso (4 pills ONCE!! daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


Mercury28
Regular Member


Date Joined Jul 2009
Total Posts : 170
   Posted 7/16/2009 11:59 AM (GMT -6)   
Thank you for the responses, I have myself booked in for a sigmoidoscopy in August, which should give the information i am seeking. I just have to get my head around taking my medication. I have Asacol foam enemas but was worried about using them because of possible side effects. I have to do something though as it is getting worse. I think i actually suffer from IBS on top of my colitis which is tough, but as my husband keeps telling me if i treated my colitis my bowel might not be as sensitive.

Christine1946
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Date Joined Aug 2008
Total Posts : 5975
   Posted 7/16/2009 12:11 PM (GMT -6)   
     I wouldn't worry about cancer.  Of course, when ill, the thought always lurks there in your mind.  My paternal grandmother died from rectal cancer at 65 and I am almost 63, so therefore, I think quite a bit about it.  I developed UC in 1998.  At the time, I was almost convinced it was cancer, bleeding, urgency, diarrhea, loss of 20 lbs in one month.  My husband took me to the ER at 2 am and they admitted me for eight days.  While in the hospital it was confirmed that I had UC.  I was greatly relieved it wasn't cancer.  I was on prednisone and Asacol.  After suffering a few months, I finally was able to retain remission, but only for a few years.  Since that time, my GI doctor has switched me from Asacol to Colazal.  I have been in and out of flares and they are getting more and more frequent.  Presently, I am in a flare and on tons of meds.  Next step is Univ of Pa Hospital, but hope I will be able to avoid it.  I have colonoscopies about every other year, my last being in May of 08 and I had a sigmoidoscope last month.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Meds as of June 09: Colazal (6 per day), 6MP (50 mgm), Probiotic (upped to 3 per day), Fish oil capsule, calcium, multivitamin, Cort enema nightly, Canasa in morning.  Also taking Benicar and Toprol to control high blood pressure.  Getting old is a b****.


daylight
New Member


Date Joined Feb 2009
Total Posts : 10
   Posted 7/16/2009 12:20 PM (GMT -6)   
A sigmoidoscopy is not the same as a colonoscopy. I was diagnosed with ulcerative colitis about 26 years ago and have had all the tests available. With a colonoscopy, the doctor can see better what is going on in the entire bowel. I know it is very difficult to get your head around it all, but you have to. Then you can look at it more objectively.
Lin

Mercury28
Regular Member


Date Joined Jul 2009
Total Posts : 170
   Posted 7/16/2009 12:25 PM (GMT -6)   
I know that a sigmoidoscopy only looks at the left side of the bowel, but that is what i had 5 years ago, and my consultant said i had left sided colitis, so he feels that i don't need a colonoscopy. I know i have to get my head around it, but it is very difficult to change as i have been ignoring my symptoms for 15 years. The only reason i want to change now is, the worry of cancer for me is ruining my life.

kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 7/16/2009 1:20 PM (GMT -6)   

If you should have benign or cancer polyps up further a sigmoid will not find them.  A colonoscopy doctor can remove the polyps, have them tested and when you find out they are benign you will be so relieved and "safe" for about 10 years - it is worth it!!

ElaineNY


 
Senior - diagnosed with proctosigmoiditis - 6/2008   
Cannot tolerate mesalamines.  New specialist (June) - Cortifoam and Anusol three times a day for now.  Hope it works! (finding it impossible to do three times a day however)
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 7/16/2009 4:26 PM (GMT -6)   
You should eat something. My gut spasms worse if I don't eat.

And, for me, it was worse to eat a little more often, like some dieticians suggest. Because I would spasm every time I ate, it was easier for me to eat less often. But I had to eat enough, like I said. Hunger pangs irritated my gut.

What you are experiencing is "normal" UC acting up, you probably don't have cancer. Have the colonoscopy, get any precancerous polyps nipped out!
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol maintenance for 20+ years; used prednisone & Rowasa for flares.  Probiotics (Ultimate Flora, 50 billion), salmon oil (omega-3) when I can remember. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet.
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ learning what normal is~ wow


seconder
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Date Joined Jun 2008
Total Posts : 610
   Posted 7/16/2009 5:31 PM (GMT -6)   
Although you fall into a higher risk of colon cancer at certain benchmark years, the risk of cancer is still small. Given their questionable effectiveness, it's unclear whether colonoscopies provide much of a cancer-detection benefit, so I'd go with a sigmoidoscopy, too.

UC-related cancer is associated with flat lesions rather than polyps which makes cancer detection even more of a gamble. Many medical protocols around the world call for prophylactic colectomy for UC at the 20-25 year mark because cancer detection becomes unreliable.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 7/16/2009 7:38 PM (GMT -6)   
My GI confirmed that it's not unusual for long time IBD sufferers to develop IBS as well, so it very likely could be that.


:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Mercury28
Regular Member


Date Joined Jul 2009
Total Posts : 170
   Posted 7/17/2009 2:57 AM (GMT -6)   
The only reason i was more worried about cancer was the fact that i have not treated my colitis at all, so maybe that would put me at more risk. My colitis has been quite bad at times, but i seem to muddle through with no drugs, but i am older now and realize that it doesn't matter how much i can deal with the effects of colitis, the lining of my bowel has probably been really damaged. In fact if i think about it, i will start to panic :o(

I have asacol foam enemas, but am too scared to use them, i am not sure what to expect and if it's going to hurt or give me big side effects. I sometimes feel really depressed as i just don't see a way forward in getting my colitis under control. I hate taking medications, i like to be as natural as possible, so what am i going to do?

psychocolon
Regular Member


Date Joined Jul 2009
Total Posts : 118
   Posted 7/17/2009 7:00 AM (GMT -6)   
I have been using Rowasa enemas for years ( a form of the same drug as Asacol) with no problem. They can really help with a flare.
You just need to get used to holding them in which does not take long. I also hate taking meds as probably do most people on the board but with this disease you have no choice sometimes because the immune system is so screwy. Sounds like the spasms could be due to IBS with your colitis which is common. However, I agree you need to be scoped . My GI says I should be scoped every 3 years due to the colitis unless it gets really worse. Hang in there, does not sound like cancer to me either, but best get everything checked out.

poopy67
Regular Member


Date Joined Jun 2009
Total Posts : 23
   Posted 7/17/2009 7:05 AM (GMT -6)   
Listen and calm down. You are fine you are just in a big flare up. I agree you need to get tested every now and then just because it will calm you when the Dr comes out and says you are just inflamed and need meds.  As for Meds. I have been able to do off and on meds for years because i feel better and get normal from them. I will say this, I am in the same shape as you are now and am having to work on the meds to get me in remission. I am first trying natural. I am on probiotics, omega 3 and bromine and once a day i take beeno before my largest meal. It is getting better. If this does not help i will go to the real drugs. What i find scary is that this uc stuff is smart. If you notice lots of these guys are on meds for a time and then have no results. Uc is a type of illness that will always find away the drugs. It has to its the nature of the beast. So start the asacol and get better. Why we feel we need to prolong the illness is weird. Uc is also in the brain if you ask me we all worry so darn much about stuff that we just can not help. I wrote once on here misery loves company and it is very true. It helped me so much just knowing others were in the same boat as me.

RH_Texas_Gal
Regular Member


Date Joined May 2009
Total Posts : 367
   Posted 7/17/2009 9:01 AM (GMT -6)   
You definitely need both scope diagnostic tests so you and your doctor are fully aware of where you are at health-wise ... to me, not to get all the testing you can get done is just keeping your head in the sand. Right now, you are finally taking some action so keep going. You are already experiencing the "worst" ... don't be negative and think of how the medication will hurt or or exacerbate your symptoms. They are likely going to help more than anything.

Explore dietary options, particularly anti-inflammatory foods too ...

seconder
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Date Joined Jun 2008
Total Posts : 610
   Posted 7/17/2009 2:35 PM (GMT -6)   
Both is overkill.

kops2da
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Date Joined Jun 2008
Total Posts : 2865
   Posted 7/17/2009 6:07 PM (GMT -6)   

Maybe endoscopy and colonoscopy - that is what they usually do.  I had both to diagnose a hiatal hernia, GERD and UC.

ElaineNY


 
Senior - diagnosed with proctosigmoiditis - 6/2008   
Cannot tolerate mesalamines.  New specialist (June) - Cortifoam and Anusol three times a day for now.  Hope it works! (finding it impossible to do three times a day however)
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 7/17/2009 7:15 PM (GMT -6)   
I've never had an upper endoscopy, have never understood it to be a part of colitis diagnosis, and I'd almost certainly refuse it.  Cancer is unlikely.  I generally just put it out of my head.
 
Colonoscopy has no statistical advantage in detecting right-sided cancer according to recent studies (and only 60% or better average in detecting left-sided cancer).  Personally, I have been refusing colonoscopies and flex sigs, but if my doctor were withholding treatment, I would probably humor him with a flex sig.  If one is going to opt for a colonoscopy, anyway, there's no reason to have a flex sig at all.
 
 

kops2da
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Date Joined Jun 2008
Total Posts : 2865
   Posted 7/17/2009 7:20 PM (GMT -6)   

I did not say it would help to diagnose UC.  It will, however, help to find out if you have IBS or other digestive problems.  Treating UC in someone with IBS and GERD, etc. is a little different in that food plays a bigger part in healing, pain, etc.  I have gas, pain and do not digest raw food well so when it goes to my colon - ouch!  I have to eat accordingly. 

ElaineNY


 
Senior - diagnosed with proctosigmoiditis - 6/2008   
Cannot tolerate mesalamines.  New specialist (June) - Cortifoam and Anusol three times a day for now.  Hope it works! (finding it impossible to do three times a day however)
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 7/18/2009 6:41 AM (GMT -6)   
Sorry to be snappish earlier, kops, but the overuse of endoscopy procedures costs everyone money and doesn't do much to help the patient or improve outcomes.  Why not keep a food diary before being scoped for IBS?

Red_34
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Date Joined Apr 2004
Total Posts : 23551
   Posted 7/18/2009 7:46 AM (GMT -6)   
Hi and welcome to Healingwell. I understand your fear and denial. I couldn't even imagine having to deal with this beast for 15 years with no medication. I've had it for 17 years and I believe that I would've ended up in the hospital not to mention probably even having my colon removed if I didn't do something about it. After the 10 year mark, yes the chances of colon cancer increases but it's not really that high of a statistic. With more the colon involved, the higher the percentages. If I were you, I would just skip the sig and go straight for the c-scope. Because in my mind, if I was that afraid of colon cancer and just had a sig, I would worry about the REST of the colon. I would do the c-scope just for peace of mind.

If you are afraid of the mesalamine enema, you can do a search on this site (located above on the dark blue bar) and type in Vitamin E enemas. This is a more natural treatment option.
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kops2da
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Date Joined Jun 2008
Total Posts : 2865
   Posted 7/18/2009 9:00 AM (GMT -6)   

I think for you younger people less scopes is no doubt more important.  As for me - myself - I like the idea of the doctor going in there to find out what is wrong - up and down.  I had my first endoscopy two years ago to confirm GERD that other doctors SAID I had for years - like 35 years.  Because of my heartburn, etc. he was checking for errosion and cancer too.  Last year I had two colonoscopies and one sigmoid.  Whatever helps my doctor to help me - that is my way!

Right now today done with prednisone for now.  I want it back so badly - still considering asking both my gastro specialists about going back on low dose - like rest of my life if necessary.  Only problem is weight gain that I don't like and I think I can counteract that on a low dose such as 20 mg. or less.

ElaineNY


 
Senior - diagnosed with proctosigmoiditis - 6/2008   
Cannot tolerate mesalamines.  New specialist (June) - Cortifoam and Anusol three times a day for now.  Hope it works! (finding it impossible to do three times a day however)
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 7/18/2009 9:38 AM (GMT -6)   
Unfortunately for the patient, these procedures only help your doctor's bottom line.  They don't necessarily help you, and they can be harmful.  In general, cancer surveillance for early detection has been a big flop -- colonoscopies included.  There are plenty of people who have posted here who were lulled into a false sense of security because the doctor didn't find dysplasia -- only to find out they have (and have had) cancer for awhile. 
 
Cancer is rare; surveillance for its early detection is a crap shoot.  We wouldn't allow any other service provider -- lawyer, mechanic, plumber -- rely on such questionable procedures for such limited benefit, probably because we bear the cost out of pocket.  Personally, I would be wary of any doctor who couldn't conduct his or her practice within established guidelines, such as those that warn against endoscopy to visualize the disease (treat the symptoms), or those that require 30+ biopsies to check for dysplasia (too time consuming for many GIs).
 
Here's yet another recent article about this.  We'll be seeing more of these.
 
 

kops2da
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Date Joined Jun 2008
Total Posts : 2865
   Posted 7/18/2009 9:46 AM (GMT -6)   

Early detection saved many of my friends and family's lives - including my husband!  I trust my specialist to know when it is necessary to test, etc.  Peace of mind.  Of course, I am 69 so think differently than when 40 for sure.  I have never heard (but know it happens) of anyone having complications from a sigmoid or colonoscopy.  They go fine for me and my husband and no after effects.  Just hate the prep, of course!  When I wen to my new gastro specialist (with 30 years experience) he ask to see all the scope results, etc.  He based my treatment on them.  Said I am too old for Remicade so have to do the best I can with rectal meds for now.  They are working - however slowly!

ElaineNY


 
Senior - diagnosed with proctosigmoiditis - 6/2008   
Cannot tolerate mesalamines.  New specialist (June) - Cortifoam and Anusol three times a day for now.  Hope it works! (finding it impossible to do three times a day however)
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 

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