So many questions...

 I was diagnosed with ulcerative colitis about 2 1/2 years ago. I think I have had it for about 5 years though. My primary care physician thought it was IBS and kept referring me to a specialist but I didn't go until a couple of year later. After I was diagnosed, I still didn't understand the seriousness of the disease and as soon as I felt better, stopped taking my medication and going to follow up appointments. I had some minor flare ups and would go back and get on medication until I felt better and then stop again. This last flare up started about a month ago so I went back, got my medication and have another colonoscopy scheduled tomorrow which I am terrified of. Anyway, now that I am starting to learn that this is a serious disease, I have so many questions and was hoping that someone may be able to answer them for me. This has by far been the worst flare up I've ever had. The worst part is the abdominal pain...is this normal? I can't live like this! I have a 3 year old daughter to take care of. I'm afraid that I'm going find out I'm dying of colon cancer at my colonoscopy tomorrow. The whole thought of this disease has me really depressed and worn out not to mention terrified. How long is the longest someone has been in remission for? Can remission last years? When I'm in remission, I feel fine and that's without medication. I've had remissions last for 9 mos and longer which is why I think I didn't realize how serious this is. I just want someone to tell me that my life is not over and that I can still live like a normal person. This whole situation has me really depressed. Also, do you believe that stress plays a factor in flare ups or the disease itself. As soon as I get stressed or something traumatic happens, I find myself having to go to the bathroom and lately I have been under a lot of stress with going through a separation, etc. One more question, I have really bad lower back pain..is this back pain or is this my kidneys? And is it normal...should I be concerned. Sorry to be so long winded but I just found this website and hope that it will help me understand my disease a little better so any information will be helpful. Thank you

Hello feeling bad and welcome to the forum!  All of your questions are vaild and very good ones.  You will find the most wonderful and passionate group of people here to help you.  I was diagnosed in April of 2005 and have taken my meds since.  I do believe you should take your meds at all times as it keeps you in remission.  Finding the right GI is crucial and having the correct diagnosis helps also.  Please do as the doctor tells you to when it comes to meds as it makes a world of difference!  As for the stress oh yes I firmly believe it has a major impact on your condition.  Rest and relaxation are really important to keeping things quiet.  Good luck and let us know how you are doing.

 

Stacy

P.S.  Yes your life can go back to normal in a different more of an aware state of mind.  Hang in there.

Also, you might want to get on a good probiotic if you dont take one already. I have success with Garden of Life - Primal Defense. It has helped a lot.

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Thank you guys for responding. I'm amazed that I got such quick responses. What is a probiotic? I've never heard of that...what will it help me with?

Hi Feelingbad, and welcome to HealingWell! This is a crummy disease to have, but you have to remember to take your meds, even when you are feeling well. It's kind of like brushing your teeth everyday; you want to make sure you brush so you don't get cavities...right? Same thing here; the maintenance meds are important even when in remission. I can tell you that when you get the right combination of meds you should be able to get things under control, and the best thing for you right now is that colonoscopy you are having tomorrow. After the look-see your doc and you can work together on getting you back into remission. As for the back pain....even though I'm in remission, I still get that searing pain from time to time; it's awful I know. I've been in remission for over two years now, thanks to Remicade infusions which are done every 8 weeks. I hope you find this info useful, and good luck with the colonscopy tomorrow. If you want more helpful info about colonoscopies (or anything else for that matter!), go up above the blue bar, and Google Custom Search. Again, welcome to the family!

FeelingBad : I discovered this forum two months ago and it has helped me immensely. Members discuss things openly and from first hand experience. A lot of the information that I have gained from this site has been useful in establishing my current supplement regimen (as listed in my signature). This regimen has improved my quality of life. Past discussion on any topic can be found by entering a keyword in the "Search Site" box at the top of each page. There is a wealth of information here, if you have time try to read as many of the posts past and present that you can.

PS
I know what it is like to have little kids to take care of. I have three little kids. A 2 year old and also 5 month old twins. The twins have both had colic over the last 5 months. I love my children very much and would not change a thing, but having 3 kids within 21 months is tiring enough for a healthy person, let alone someone battling a chronic illness. After the twins were born, the exhaustion and fatigue caught up with me and gave me two flares within a 3 month period. I was dropping weight and having trouble helping my wife with the little ones. This was after not having a flare for years. Discovering this forum has armed me with the knowledge to try and fight back against this disease.

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Diagnosed UC 1999

The question I struggle with and can't seem to find a direct answer to is what the risks are of not taking maintenance medication. I was diagnosed with UC in December 2006 and after my symptoms from that flare up calmed down (treated with Salofalk suppositories for about 3 weeks), I have not taken any medication since. My doctor prescribed Asacol for maintenance but I haven't filled the prescription yet. I have been symptom free since January until about 2 weeks ago when I started flaring again (I started the Salofalk suppositories again this week to try and get it under control). I have been working with a naturopathic doctor to find a natural way to treat this condition instead of a lifetime of prescription medication and side effects. That can be really hard on the body even though it can keep the disease in check (which is also really hard on the body). Can anyone tell me if taking maintenance meds slows the progression of the disease itself or is it strictly to reduce the likelihood of a flare up? I don't want to put my health at risk by not taking my meds but I also don't want to take prescriptions if I can find another way.

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53 yr old male, UC since 1978

Hi! I had UC for almost 7 years before I found this place and it has helped me a lot.

If you are looking for a natural way to treat UC, take your meds while doing it.

I stopped taking my meds b/c I felt fine and it has taken me 8 weeks of taking my meds like I am supposed to get to a point where I am having 1 to 3 bm's a day from 12 and almost normal stools and bloody about 30% of the time rather than 100%. Going through a major gas problem now I think b/c of the Asacol but at least I am not bleeding every single time, 12 times a day.

I can't answer your other questions, but write them down and bring them to your next GI appt. I write stuff down when I take my Mom to the Doc, but I don't do it for myself...........

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Beth, 31

Rick and Beth: Thanks for your replies, it really helps to hear from other people with experience actually HAVING the disease and coping with it rather than a doctor (who has the medical training but doesn't have the disease, has never taken the meds and therefore has me skeptical when he says "just take these pills every day for the rest of your life and you'll be fine...and oh no, there's absolutely no side effects!"). LOL.

Rather than taking the Asacol, can it be maintained as effectively using the Salofalk suppositories nightly instead, do you know? I may be delusional, but it just seems to me they would have less impact on the rest of my system since the medication is isolated to the affected area. It is reassuring to hear you do not experience many side effects from taking Asacol though. Things I have read about the possible side effects include abdominal cramps, diarrhea (hey, isn't this what the drug is supposed to PREVENT??), hair loss, acne, etc, etc. Kinda of scared me away from taking them.

Hi Feeling Bad. I was diagnosed with UC earlier this year. I went through 3 months of not being able to go to work because i was embarrased, but now i have learned to live with it. I have bad times and good times and i currently take Sulphasalzine which has helped a little. I find that my stomach feels off all the time though as if it needs a good cleaning out with a vacuum cleaner. I agree that it is frightening, but i have found this site such an inspiration.

Learning to live with changes in the body is hard at any age, but you must take your medication. Medication works to control the problems that can cause the flare ups. Keep a check on your diet too. Don't eat too many spicy foods and not too much bread or fibre if possible because this can cause stomach pain. Your body is just reacting to the fact that part of the colon is not as healthy as other parts of it may be. It can be controlled, and in extreme circumstances i understand surgery is required. Keep on the meds and you will find you dont get as many flares.

Good luck and take care of you xxx

I really think the biggest thing to do is STAY on your meds! I did the same thing you did, took myself off my meds cause I was feeling fine. I used a Rowasa enema nightly, nothing else, but I still started flaring badly really quick. And I flared for 2 years, & wound up taking more meds than I ever had in the past! I'm still on a bunch of heavy-duty meds now, as opposed to just Asacol in the past. And if you're worried about side-effects, which I was, really talk with your doctor about them, & do your own research too. The front line drugs they use to treat UC (Asacol, Rowasa, etc.) have been in use for a long time & have very little side effects. Going off meds is probably one of the worst things you can do for yourself. You gotta think of it like a diabetic needing insulin forever- know what I mean?

Abdominal pain, fever, bleeding, gas, urgency... all these things are normal during a flare. UC meds have a "maintenance dose" that's lower than what's used during an active flare. Staying on this low dose permanently helps you maintain remission. And yes, it is possible to have years of remission. I haven't had a major flare since 2000.

I'd highly recommend you learn as much as possible about UC. Over the years, I've collected a library of gastrointestinal health books. Being an informed patient helps you feel more in control of your life, helps you receive the best healthcare, and will help you learn what combination of drugs, natural supplements, dietary and lifestyle modifications work best for you.

In my experience, life is not over, but you may never go back to feeling "normal." Your digestion will always be a weak point and will need to be protected. I'll never eat the way I did before I was diagnosed and I take much better care of myself physically. Stress doesn't cause IBD, but can certainly make things worse. It's worthwhile to make lifestyle changes that will allow you time to relax and heal.

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Diagnosed with ulcerative colitis spring 1999

Yes, it may be it's a mindset that I need to get past. This is a disease and not necessarily something I can control with diet and a healthy lifestyle. I think I have subconsciously believed I could until now (currently having a very bad flare), especially since I was originally diagnosed with IBS about 5 years ago and have been in the mode of controlling how I feel strictly with how I eat. That probably gave me a false sense of control over my UC. Good comparison to a diabetic needing insulin...helps drive the point home. Thanks.

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Sandra, age 34

Hi Sandra,

I was diagnosed two years ago with Mild Acute Colitis through a biopsy during a colonoscopy.  Because it was just in a minute location and not throughout the whole colon and I was having no symptoms of Colitis, plus my SED rate was 4, the GI doc thought that it was probably irritation from taking the prep and I went on my way without taking any meds.  Here it is two years later and I am feeling great, still no symptoms, but started seeing blood in my stools.  The GI doc thought hemrroids but wanted to do a scope to be sure.  Well the scope revealed Colitis had spread from the minute location that it was in two years ago and the biopsy results were now revealed as chronic colitis instead of acute.  So within that two year time frame that I thought everything was running along smoothly it really wasn't.  I wasn't having symptoms either.  He prescribed Asacol which I have been on now for about a month and a half.  I was scared to death of the side effects you mentioned.  I had/have no side effects that I am aware of and the blood in stools stopped a week after taking the Asacol.  So, my recommendation is to pop those pills!

Zurich

Zurich: Your story scares the hell out of me. I was told proctitis normally doesn't spread like that...

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Sandra, age 34

Sandra...we all have the potential for it to spread. UC starts at the rectum and spreads upward in a continual pattern. All UCers have UP, has started with UP...but not necessarily has symptoms that might alert changes until the most obvious of diarrhea (higher inflammation) and bleeding appears and scares the heck out of us to prompt more indepth investigation.

Some will definintiely spread faster than others. Some may not spread at all. I personally believe that those who don't do the both ends approach of using treatment and then maintenance meds (starting with 5ASA) run the higher risk of it spreading upward.

Statistics don't stop or prevent anything. I cringe when I see that patients with UP have only sig check-ups...never colonoscopies. Grrr...what's going on above that could very well be "something". Especially if it's not fitting a specified criteria.

You can be the one that doesn't fit the "criteria". I know I am...and have learned to not assume too much. I may be one where my UC won't spread beyond the initial diagnosis...but I'm not going to risk it. My doc wants to make sure that everything above that is kept nice and quiet.

quincy

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I know that my UC spread becuase I stopped taking asacol. I did have a very nice remission (5yrs) with no major flar but now I am paying for it. My UC spread trhoughout my colon (from left side) and I have been stuck in this flare for a year. I will never stop my meds again!!! I'm not saying I wouldn't have flared on meds but I don't beleive it would have been as severe as it has been this time around. I haveno one to blame but myself.

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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

Let yourself off the hook..you felt good for a long time, and remember that we don't all realise the changes in the colon until they're quite obvious.

I think once your meds start to really kick in and when you're off the prednisone, you'll be feeling good again. It takes a long while...
Hang tough!

How does the Zofran work for nausea?

quincy

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Hello Everyone,
I'm SO glad I found this site. I was diagnosis with UC June 2006 and still haven't found the right drug combo. Three weeks ago I had had my second colonoscopy and was told that it has spread all the way up to my transverse. I was told that I only have two options: Remicade or surgery. I decided to go with the Remicade and I saw a big difference the first week, less urgency and less blood. But then everything started going down hill for me again. I received my second infusion last Tuesday and started feeling better for about 5 days but everything started back again. I called my Doc and he put me back on prednisone (something I hate because everytime I get weaned off I feel like I'm going crazy, I'm told that's a normal side effect not sure though). Needless to say I'm an emotional wreck. I did finally get an appointment at Shands (Gainsville,Fl) with a reseach Doc. I'm hoping there are more options out there for me.

current meds:
Remicade 5mg per kg
prednisone 20 bid
multivitamin

This is something I didn't know (the potential of it spreading and the effect maintenance meds have on preventing that from happening). My symptoms when diagnosed did not include diarrhea but I did have bleeding then, which is what prompted the visit to the GI. This time I have not noticed any bleeding (yet) but the diarrhea makes me think it has spread higher to cause this. Thanks for the information.

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Sandra, age 34

All I can share is my long experience.......
I was diagnoed in 1962.......
Unlike some, I went from perfectly fine to ACUTE.
I was 15, had come home from ice skating, and went to bed. I suddenly spiked a fever and had diarrhea all night. My parents took me to the doctor the next day. Unfortunately, he was a specialist who had just done work on my sinuses and assumed it was just an infection so he put me on antibiotics and aspirin. Two weeks later after losing 30 pounds in that time frame, and needing six blood transfusions, they put me in the hospital. It took two weeks to diagnose. And my entire colon was hot and bleeding. The doctors told my parents that I would probably need surgery within a year. So a year later I went back and lo and behold, 99% of my colon had cleared up and I was left with left side UC.

Over the years I have tried not taking meds and learned the hard way it does not work.

For me, when I am not flaring I lower my dose of Azulfadine to 4 x 500 mg per day. When I was young I was on and off prednisone for about six years, but since then, I have been able to control it without prednisone. But even within the last few years, when I tried stopping the meds, flares happened. So I am determined to not try that again.

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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

I agree with others on taking meds.  I too quit colazal thinking it wasn't doing any good.  Bad mistake I won't make again.  Was put on Entocort in addition to colazal after that and things calmed down somewhat.  Lately, things have gotten worse with more gas, Diarrhea, some bleeding.  A day trip out of town resulted in barely making back to my home for relief.  I've tried most diet changes including homemade yogurt for an extended time, more fiber, less fiber, only bad to worse.  GI appt. next month, then colonoscopy the next.  I'm really apprehensive about this next one, my 5th or 6th, I think.  Last results with age and years with IBD pointing to possible bad news.  I recently retired and this is definitely not what I had in mind after all those years.  Thank goodness for this forum.  Come here often and take your meds.  Good luck.