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

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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- 29 y/o male living in the DC Metropolitan region

- UC diagnosed - April, 2006 - symptoms came on sudden

- GI could not determine type of UC as I was too inflamed during the colonoscopy

- Completed 3rd Prednisone taper on 4/13/07 - Tapered from early January through mid-April after being hospitalized from a bad flare with anemia & severe joint pain.

- Currently in remission

- 6 Colazal/day, 1 Multivitamin, Fish oil, Primal Defense Probiotics 2/day, Iron supplement when bleeding

- Use small dose (5-10mg) of prednisone occassionally to manage joint pain

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!

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Carol

Remicade - will have my 18th infusion on July 12.

Imuran - 100 mgs....taken before bedtime

Vitamin B-12/Biotin, Probiotics

"Life is short -- make fun of it"

Co-Moderator for the UC Forum

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.

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

UC Diagnosed March 2000

Asacol 400 mg 6 pills 2xday

Calcium and Vitamin D 600 mg 2xday

Simastavin 20 mg 1xday

Diovan 80mg 1xday (dx: hematuria w/proteinuria): I have normal blood pressure, this is for my kidney - waiting for a dx.

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

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

Possibly misdiagnosed

 

Maintenance dose sulfasalazine

Probiotics, l-glutamine and fish oil caps

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

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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*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 3rd night)

~diagnosed January 1989 UC (proctosigmoiditis)

~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)

~Bentylol (dicyclomine) 20mg as needed

~vitamins/minerals 

~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime

~Natural Factors Multi Digestive Enzymes with supper

~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)

~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)

My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

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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*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 3rd night)

~diagnosed January 1989 UC (proctosigmoiditis)

~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)

~Bentylol (dicyclomine) 20mg as needed

~vitamins/minerals 

~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime

~Natural Factors Multi Digestive Enzymes with supper

~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)

~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)

My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

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

Diagnosed December 2006 with UC (proctitis)

Asacol (800mg x 2), Salofalk suppositories

Multivitamin

Vitamins E, B complex, magnesium

Omega 3/6 supplements (500mg x 2)

Probiotic x 2

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.

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Left-sided UC Diagnosed 2004

Iron Deficiency Anemia Diagnosed 2007

Indeterminate Dysplasia Biopsy Result 2006   

Colazal  -  2X3 daily 

Entocort - 2 daily

Nexium

Folic Acid 

Ferrous Sulfate - 325 mg X3 daily

Vitamin C - 500 mg 

Canasa - As Needed