5yr in remission

Hi all, I am 19 years and I was diagnosed when Ulcerative colitis at age 12!! First it was proctitis then after a year or two, it became pancolitis. I had two flare ups all together (my initial one + one more 5 years ago) and i was put on prednisone for around 3 months andthat was the most horrible experience for me (I was only 15). However, I have been in remission since then. I cant say my bowel is COMPLETELY normal but i only have 2-3 movements a day and most of the time it is well formed. I cant recall how my bowel movements were before i had UC but what I know is that the past 5 yrs I havent had any of the symptoms which I had during my flare ups. I was told I should start doing yearly colonoscopies to screen for cancer and I am going to have my first one in a week. Ive only had pancolitis for around 5-6 years.. am I at an increased risk? Does the fact that I have been in remission mean there is less chance of developing colectoral cancer?

Another thing to note is that i stopped taking asacol on my own (without consulting a doctor) at around september last year then starting taking it again in June after my doc said its not a good idea to do that without having a colonoscopy but what he said didnt make sense because with or without asacol, I see no difference. Infact, without it I feel better as I dont have the fear evrytime I take the pills. The doctor did an examination (about 6-10cm only) and said it looked completely normal, he couldnt even see any ulcers. since my disease started in that area, is it logical to assume that since it is fine, the rest of the colon should be good? Ie, it has had the disease for the longest time..

Anyways, well I am a bit worried about my colonoscopy, I have those weird visions of finding a growth in my bowel.. although I have no family history of any cancer.. I am indeed counting the days until next wednesday! .. oh and by the way I am having it done sedation free.. I am not going to having toxic chemicals in my system every single year.. anyone did it sedation free? my doc said it is onnly slightly uncomfortable.. all my previous ones were done under a general anaesthetic but then again, 6yrs ago i was a kid and the technology was different.. any thoughts?

Hi Viva - I've had the flexible sig with only a valium pill about 8 years ago and they could not complete it as I was in pain - only did about 70% and even at that had to stop 2-3 times. I don't consider myself a big baby but I could not hack it at all. I wouldn't even want to think about a full blown colonoscopy without one.

Maybe you have a very high threshold for pain but my recommendation would be to not subject yourself to the discomfort. My husband who has had many of these had one up north with no sedation and said it wasn't too bad. However he has had 3 since we moved to Florida and all with the sedation and even he says that's the way to go.

Let's see what the general consensus is from the veteran ucer's out there.

Good luck and let us know how you make out. 5 years is a good amount of time to be functional the way you are and I hope that it continues for you forever!

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60 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 ... left sided UC 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 good days & bad days 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. Fosamax and mthly B12 shots folic acid 1mg

From what I understand, cancer in the bowel happens when a cell divides incorrectly etc . For people with UC our bowels are constantly under attack, they get hurt and bleed and have to repair themselves. Each time a repair happens the cells have to divide and go through a renewal process. This is why we are at risk of cancer - because we have a lot more cell division going on in our bowels than a non UC person and therefore there is more scope for our DNA to mess up, divide incorrectly and cause a tumor growth.

So if you've been in remission for 5 yrs theres not much going on in your colon (in terms of cell division) then your prognosis is excellent. Also it really takes 10+ years of active UC for your colon cancer risk to start to increase about that of the "normal" population.

I think if you look at the overall stats the current thinking is that people with UC are 20-30 times more likely to get bowel cancer than the normal population. But this is still a small number - so dont let the 20-30 freak you out. I think overall about 5% of people with UC get cancer. This is an average figure - it applies to people who were diagnosed with UC at age 60 and equally to those diagnosed with UC at age 20. So for younger people like you and me the overall rate is probably a little higher than 5%.

I've looked at hepas of stats online and have to say a lot of them are old UC/cancer stats. I'd say they go back to the mid 90s. They dont seem to have been updated much. And anyway stats are always about 5 yrs behind the current - it takes ages to collect, collate and publish the figs. I wouldn't be surprised if the 5% was closer to 2.5% based on current 2007 figures.

Hope this helps.

Best of luck

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15 mg Pred (yuck!)

As previously stated, growth of colon cancer is very slow from the first sign of a polyp. There is probably not much to worry about given your last scope was within five years. However, UCers are at a higher risk than the normal population so some docs like to do the scope more frequently than if there was no UC. Also, it is not a bad idea to just get a look at the whole colon occassionaly. The doc can see if anything is brewing before you are even aware, and also the occasional biopsy does not hurt. In February of 07 I was flaring, but did not feel terrible, and it turned out my whole colon was inflammed. I would not have known without my colonoscopy. I have had 5 of them in the past 6 years, and I have to say that I would never do one without sedation. I think it would be a lot more than just slightly uncomfortable. It is your call, but you would not get me near a full colon scope without the sedation. Good Luck, and I hope you continue feeling good.

Who says sedative drugs are toxic?

Not much is known about UC but one thing all doctors agree on is that taking maintenance medications will reduce your risk for flares and reduce your risk of colon cancer. Since you have pancolitis you are at a greater risk to have colon cancer then those who do not have pancolitis. However, as noted, colon cancer is very slow growing, it can take 10 years before manifesting. As long as you are getting regular screening and are controlling your UC you should be fine.

Colon cancer is not a cancer that people have to die from. Most people that do die from colon cancer are ones who have had noticeable changes in bowel habits but were too embarrassed or scared to be checked out.

Sue

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dx proctitis in 1987

Thank you a lot for your replies. They made me feel a lot better and less worried.. :) anyways.. abotu the sedation im surprised about your replies.. my doctor told me most people do it sedation free.. and below I have posted a study about it:

http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=15768182&dopt=AbstractPlus
RESULTS: Almost all colonoscopies (99.6 percent: 672/675) were successful. There were four complications related to colonoscopy (bleeding after polypectomy). Patients and nurses rated pain by a four-point pain scale as follows. For the patients: nil, 69.6 percent (470/675); mild, 28.0 percent (189/675); moderate, 2.2 percent (15/675); severe, 0.1 percent (1/675). For the nurses: nil, 76.1 percent (514/675); mild, 22.7 percent (153/675); moderate, 0.9 percent (6/ 675); severe, 0.3 percent (2/675). Patients rarely suffered from severe pain during carefully performed colonoscopies. The pain level of almost all colonoscopies was acceptable by patients, with only six patients (1.0 percent) stating that they would never undergo a colonoscopy without sedation in the future because of unbearable pain. CONCLUSIONS: This study suggests that carefully performed sedation-free colonoscopy rarely causes complications and is well accepted by most patients. Sedation-free colonoscopy is more cost-effective, may be safer, and should be offered as an alternative to colonoscopy with sedation.

It seems like most people said its not painful... and my doctor told me they use carbon dioxide instead of air and that makes it more comfortable.. moreover I did a small rectum examination in his office and there was hardly any pain.. it was only the insertion that caused slight pain but he told me the instrument he uses for the full colonoscopy is even smaller. Also, you ahve to take into account that skill of the doctor.. and the technology they use... he told me he uses a device which he developed that monitors the position of the endoscope in the colon to avoid loops.. anyways well what do you think? the nurses told me they usually start it without sedation and if the patient is in a lot of pain, they give him light sedatives that make him feel drowsy and relax his muscles.. im gonna try my best not to take them because thinking about it, every year I have to do this procedure I might as well get used to it without sedation because after all the chemicals (sedatives) are not very good for the body.. and have their added risks.

Viva - good luck in whatever you decide. Let us know how you made out.

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60 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 ... left sided UC 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 good days & bad days 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. Fosamax and mthly B12 shots folic acid 1mg

I have something else I would like to ask.. does colon cancer always start as a polyp? or are there other faster ways for a cancer to develop?

Hi,

Colon cancer,  especially in UC,  does not necessarily start as a polyp and can develop directly.

My daughters Ped. GI said most (80%) people come out of remission because they feel so good that they stop the meds.  I was told my daughter (age 5) will never be off meds.

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Joan

I was in a 5 yr remission without meds. Then I flared. Without meds my left sided colitis spread to pancolitis. A handful of pills a day is way better than what I have been dealing with. I am now in this flare that won't go away. It's been a year. I would strongly encourage anyone to stay on their meds even if you feel fine. Please learn from my mistakes.

about sedation during scopes...I have had 10 flex sigs without sedation and all of them suck. it doesn't hurt so much as ache and is extrememly uncomfortable. I would never, NEVER do a colonoscopy without sedation. I know many have and say it was not so bad. Th flex sig only goes about a quarter of the way and they have never been able to get around a corner becuase it hurst. Really hurts. That's when they usually stop and pull out. If you do a colonoscopy without sedation and end up feeling pain and they pull out, you won't get the info you need and probably have to do it again. I wouldn't want to go throught the prep again.

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Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, Rowasa every other night, down to 20 mg pred.
75mg Imuran starting 8/23/07---fingers crossed!
Prontonix once daily for acid reflux, zofran twice daily for nausea

Thanks kelly yes i will learn from your mistake and wont stop my medication..

Anyways you guys are all scaring me about the sedation.. what about this study i read and posted about the majority saying they didnt feel any pain? I understand the the air blown inside is very uncomfortable but then the doc told me they use carbon dioxide now instead of air and that makes it more comfortable. MOREOVER, the doc told me that when theres a flare up its much more painful beacuse the colon is inflamed so badly.. but now im not in a flare up so maybe that will help? Also, you are talking about mild sedation right? not a general anaesthetic coz that would just make the risks much bigger..

It's routine to have a sigmoidoscopy without sedation but I have never heard of a colonoscopy done without sedation. As stated above, the colonoscopy is much more invasive than a sigmoidoscopy and it does hurt when the instrument rounds the corners. My medication was wearing off when the GI got near the end and it was not comfortable.

I don't understand your fear of mild sedation? You are not unconscious you just don't feel the pain. The ocassional sedative for either dental work or a colonoscopy is not harmful to your body. In fact it's probably healthier as your adrenaline glands won't go in over drive and stress because of the pain.

Sue

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dx proctitis in 1987

I have been completely knocked out for colonoscopies. I am out for about a half hour. I have had more than 5 colonoscopies this way and have no adverse affects. Personally i would never have one without being knocked out. With a good doc and an anesthesiologist the risks are small. Mine are even done at my gi's office and not a hospital. (its a huge office with an anesthegiologist and full staff) When my Gi tells me i need a sig i ask if i can have a colonoscopy instead so i don't have to be awake!

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Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, Rowasa every other night, down to 20 mg pred.
75mg Imuran starting 8/23/07---fingers crossed!
Prontonix once daily for acid reflux, zofran twice daily for nausea

I am really surprised about what all of you are telling me! my doctor said most people do full colonoscopies without ANY form of sedation and i have that study as well which i posted. Maybe its different in the UK than in america (i am guessing everyone here is in america) but anyways I will do as the doctor told me.. start without sedation and if the pain is too much they can give me some mild sedatives.

The thing with us is that we already have weak immune systems.. and we are usually on many drugs we dont need MORE chemicals put in our system.. especially sedatives/anaesthetics. Well, that is my opinion at least. I would rather put up with the pain than take chemicals but I cant judge until I have done it.. My previous ones were with full general anaesthetic but then again they were 5 years ago and i was only 14.

I'm in Ireland. When I went in for my colonscope I was allowed to chose my sedation. The surgeon said there was different forms from mild to hypnotic. I told him I didn't want to remember anything - and I didn't!! I was also a very "easy" experience on my body. I had no reaction to this "full" sedation. I woke up not realising I had been asleep and I felt great. I wasn't under anaesthetic. Like I say he described it as a hypnotic sedation. I remember talking to the nurse and my next memory was talking to a different nurse in the same room. I have no memory of being "put to sleep".

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5 mg Pred (yuck!)

I stopped taking my meds b/c I felt fine and got a flare that I have been trying to come out of for a few months, not fun at all.  Doc says it's worse if I don't take my meds and I now agree.

Now at week 9 of taking all my meds and feel like I am almost in remission.  I have mild colitis that only affects my rectum.

That's great news for a long remission!

http://findarticles.com/p/articles/mi_m0BJI/is_3_31/ai_71632710


thats another article about it.. i dont know what to expect with the extremely cotnrasting opinions! you guys tell me its horrible and dont even try it and studies i read (as well as my doctcor) tell me most people find it fine.. i guess theres a first time for everythign hehe.

We don't have weak immune systems, we have overactive immune systems.

Sue

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dx proctitis in 1987

My colonscopy was without sedation, only a relaxant which was given interveniously (sp?), and this the norm at the hospital where I had mine.  I only had one small discomfort and the doctor asked me to move onto my back for a bit,then was OK.

whatever happens, the most important thing is that you are taking care of yourself and getting all the information possible! good luck!

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katie
22
diagnosed with cecal volvulus, 2006; two colon resections in the same year
diagnosed with colitis 2007
malrotated colon
no cecal valve, removed during surgery
on antibiotics while undergoing further testing by doctor
will start VSL #3 when antibiotics are done.

and the prep is DEFINITELY the worst part

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katie
22
diagnosed with cecal volvulus, 2006; two colon resections in the same year
diagnosed with colitis 2007
malrotated colon
no cecal valve, removed during surgery
on antibiotics while undergoing further testing by doctor
will start VSL #3 when antibiotics are done.

I've never heard of someone having a colonoscopy without sedation, much less the majority. Absolutely NO WAY would I try it. I had a flex sig (only going up the first third of the colon) without sedation and it was miserable. At sat in my doc's office and cried like a baby afterwards; I felt violated.

The first time I had a colonoscopy, when I was really ill, they didn't knock me out completely and were unable to get all the way around, my colon was spasming so badly. In recovery, my doc asked if I remembered anything. I said, "Yes, someone was screaming." (That would be me.) I'll never have one that I'm not completely out.

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Diagnosed with ulcerative colitis spring 1999