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So what is my outlook like now knowing I've got pancolitis?

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Posted 10/5/2011 10:58 PM (GMT 0)
I'm really scared now after all the reading I've been doing. Cancer? Surgery? I don't want either of these things. :(
I'm still so young and I feel like most of my life I just haven't really been living. The thought that this is only going to strip more life from me makes me so incredibly sad. I keep reading that pancolitis is basically the worst case you can have and I'm just so worried about what the future has in store for me.

Anyone with pancolitis have any advice on this? Is it possible to avoid surgery and is there anything I can do to keep the cancer risk down?
Posted 10/5/2011 11:24 PM (GMT 0)
Wing, you already took the first step in preventing cancer by having your colonoscopy. Congratulations on doing that!! The next step would be to keep getting them regularly. Probably every year considering you've had UC for quite a while. I too have pancolitis. I try not to get too caught up in thinking mine is any more severe than someone with more limited UC. There are people here who have had surgery for proctitis and people with pancolitis who have been in remission for years. Just because it is throughout doesn't mean it will be difficult to treat. I really think you need to get some help for your depression. Having this illness isn't easy but it's much harder when you're always seeing the negative. There are a lot of treatments available. We all go through ups and downs and we have to be realistic when judging our condition. I can't assume that I will be well on any given day. That's one thing that drives me crazy, the unpredictability... I have learned to take things one day at a time. If you feel bad, try to remember tomorrow may be better. One bad day doesn't mean you're headed downhill. I had a few bad days this week and I hit it hard with Canasa (rectal suppositiries AM) and Rowasa enemas before bed and today I feel quite well. I definitely recommend getting some rectal medications. How many Lialda are you taking each day?
Posted 10/5/2011 11:38 PM (GMT 0)
Hi Wing. Just wanted to say I had pancolitis when I was first diagnosed in March of 2007 and with just Asacol and Rowasa enemas I've been in remission almost all of that time. I've had some minor rectal inflammation and minor symptoms with a few beginnings of flares pop up over the last 4 years, but as long as I increase my dosage of the enemas at the first sign of symptoms, I've always been able to keep my inflammation at bay for the most part. Besides taking my meds every day, I live a pretty normal life. I work full-time, I'm able to be active outside, I eat what I want.

Just wanted to give you some hope that just because you have pancolitis doesn't mean you will always have symptoms. Try not to worry about the rest of your life at this point. Just focus on getting better right now - take your meds, get enough sleep, eat healthy, etc. The best thing you can do to keep cancer risk down is to control your inflammation the best you can.
Posted 10/5/2011 11:59 PM (GMT 0)
I was diagnosed with pancolitis in January 2009, and so far, that first flare is the only one I've had. It did take me a while to get into remission, but that was mostly because I was really trying to avoid using prednisone. I was pretty close to remission, too, just using Asacol and Rowasa, when I got a tummy bug from my son and my flare got a lot worse again. So then I started pred. Once I was on the pred, my symptoms quickly disappeared and I was able to taper off easily.

I have been in remission (no symptoms + off pred) since early May 2009 and I feel really good. I don't have any symptoms at all. I am due for a colonoscopy next week, so we'll see what that brings. I think the key to my long remission is that the mesalamine-based meds work very well for me. Also, I NEVER skip doses and I am still using mesalamine enemas twice weekly. I really do urge you to ask your doctor about them. He may say that since you have pancolitis, they won't work for you, but that's a bunch of bull hockey.

Like NSSG said, if you are having problems with depression, seek some help! I was diagnosed with post-partum anxiety, so when I was diagnosed I was already on Zoloft for that (my first flare started shortly after my son was born). I think it helped me deal with the diagnosis. However, I think what helped most is that I had an infant to take care of and focus on, so I didn't really have time to dwell on the fact that I had UC. I had a baby boy who needed a happy momma (and, there's nothing much more soothing than rocking a sweet baby!). So try to look for the positives in your life and focus on that.

Also, just b/c you have pancolitis right now doesn't mean that each time you flare, your entire colon will be involved. I have heard of people who had limited flares despite having pancolitis at one time.
Posted 10/6/2011 12:25 AM (GMT 0)
I was dx'ed with pancolits and believe me, surgery is not the end of the world. Quite the opposite. Everyone's UC is different so hopefully you can get yours under control without ever having to worry about it. Take it one step at a time. Best wishes.
Posted 10/6/2011 12:37 AM (GMT 0)
I too have pancolitis -- diagnosed in the hospital in September 2009. Been in remission since November 2010 (my last pred dose)

Now my new GI thinks I just have proctitis. He's nuts. The Asacol is probably doing its job in taking care of every area but the rectum which I hand over to the enemas and suppositories (mesalamine). I think the only difference I have with some of the in-remission folks is that I need to shoot up some form of rectal mesalamine every 24 hours and not veer from that schedule. When I was tapering down, getting a return of symptoms too quickly, then increasing, all I could think about was my UC and the potential cancer-related problems that periodic inflammation could cause and it was driving me nuts.

A routine of meds, not changing them, helps me think about other things. Yes, I wish it were a more limited form of UC because of the potential cancer risk from persistent inflammation, but as long as I keep the inflammation in check I think it will be OK.

The first year of pancolitis was devastating for me. I overthought and panicked about everything. Went nuts on the Internet reading everything. When I got into a routine that worked, and didn't dicker with it, it became all about business as usual management of a chronic illness. As far as the pancolitis part, people can get their entire colon yanked because of stubborn rectal inflammation alone.
Posted 10/6/2011 1:35 AM (GMT 0)
Both my kiddos have pancolitis. My son started out with left sided (dx '02), but we discovered in '08 that it had progressed to pancolitis. My daughter was dx with moderate to severe pancolitis from day one in '07.

My son's most recent flare was limited to his left side so pancolitis doesn't always mean the whole colon will be involved.

Both my kids live pretty full lives. My son is living in a Fraternity house and doing well in college. My daughter takes 5 dance classes per week and is like the energizer bunny!

Live each day in the moment. Take your meds. Eat healthy. Exercise.

((((Hugs))))!
Posted 10/6/2011 2:25 AM (GMT 0)
I have pancolitis, just diagnosed last April. I'm doing quite well now that I know what is wrong and I'm properly medicated. It's not the end of the world, although some days it feels that way. My Doc told me that it's good to have the diagnosis and medicate, therefore the risk of cancer is the same as anyone else.

It's a hard diagnosis and it has taken me all this time to get it into my brain that it's not the end of the world. It's certainly not an auto immune disorder anyone wants to talk about, but believe me, it's manageable.

My best to you :-)
Posted 10/6/2011 3:22 AM (GMT 0)
I have pan-colitis. You need to keep it under control because UC can lead to thrombosis which it did for me and resulted in week long stay in the ICU 13 months ago. That was also due to end of summer dehydration and high dose prednisone. I have eliminated both of those and had no flare this summer. This is a good remission and I am learning how to eat and how to hydrate to extend my remission.

I am currently not on daily meds. Daily supplements are curcumin, turmeric, yogurt, pure water with electrolytes. No HFCS and I avoid processed food. I feel the food choices I make each day are my medicine. Natural food you could only get before the modern age seems to work for me. Hydrating without all the junk seems to work for me.
Posted 10/6/2011 3:31 AM (GMT 0)
u are not alone and it'll be okay!! there's so many treatments out there so don't feel like you are doomed. i have pancolitis and my medication has been able to help me a lot. i honestly thought i was going to die this summer because of how sick i was. you just have to stay strong and stick to a method of healing that works for you.
Posted 10/6/2011 12:54 PM (GMT 0)
I was diagnosed in July 2010 with mild left-side UC which quickly advanced to severe pancolitis due to too may major life events (father's death, car accident, ID Theft)  It's been acrazy year for me!

I too had the same question wondering if all my flare will be my whole colon.  These post really provided me with some hope that once I get this managed my flares won't always be this bad.

Riight now we got to concentrate on the present moments. I practice midful meditation to keep the pain and stresss level down. Also help with depression.  I perfer not to take anti-depressants. Rather face it and learn how to deal with it than cover it up. But a small dose along with attending support groups may help. I do attend a monthly support group too.

Thre are alot of med choices out there too...not just the traditional ones. There's Low Dose Naltrexone (compund), Human Growth Hormones, fecial transplant, Mck. Jeffereis protocol, Budesonide enemas/suppositories (compound).

I also see an intergrative doctor and had good success with his treatment compared to the tradtional meds. My GI kept changing too many things at one time.  Bes tto do one thing at a time so you can adjust to the meds and figure out what is working.

Hang in there...we're all in this together!

Posted 10/6/2011 2:32 PM (GMT 0)
I was diagnosed as pancolitis (moderate) Jan 2010. I think the moderate vs severe may be more of import than the pan- versus left-sided. I have never really gotten into remission, although there have been 3 times I moved in that direction before symptoms got worse..

Thing is, 5-ASA worked in the right and transverse colon. It is now UC free, confirmed by biopsy. The symptoms got worse because even while the right and transverse colon was settling into remission, the left was virtually untreated. So my colitis is NOW left-sided, but I am unsure if I am still a "pancolitis" type for prognosis and statistical and decision purposes. I intend to discuss this with the GI, because some of the recommendations for both managing flares and maintaining remission do differ based on left- or pan-colitis.

I am now using rectal meds to get the 5-asa coverage better on the left side. I think even some proctitis can be quite unpleasant and painful, so the discomfort of a future flare may not be so strongly connected with the extent of coverage.

My advice would be to really work the oral and rectal 5-asa and get feeling better now. If you even have future flares, you can come back and tell us the answer to the question - but hopefully you stay in remission.

 

Post Edited (DBwithUC) : 10/6/2011 10:36:49 AM (GMT-6)

Posted 10/6/2011 3:17 PM (GMT 0)
Thank you everyone, sorry I haven't been able to respond to you all. I was quite depressed yesterday and still pretty depressed today (I had a rough morning). I'm going to try and stay positive and hopefully my symptoms go away and I have good results at my next annual scope. I appreciate all of the support you guys have given to me in the short days that I have been a member here, I can't tell you how much it helps just to have people to reassure me that everything is going to be alright.
Posted 10/6/2011 5:15 PM (GMT 0)
Pretty soon you'll be advising others on how you learned to manage and cope with your UC!!
Posted 10/8/2011 1:57 AM (GMT 0)

I'm sorry to hear you're having a hard time. I battle depression, too, when I'm in a flare. It's easy to worry when you're so washed out. See a counselor if it gets to be too much - there are good ones out there that specialize in those of us with chronic disease and pain. The years that I went to a counselor really helped me to put things into perspective, taught me the importance of relaxation, etc. and gave me the ability to research this disease and find what works for me - from a more clinical perspective and not so emotionally.

Posted 10/8/2011 7:41 AM (GMT 0)

WingZero said...
Thank you everyone, sorry I haven't been able to respond to you all. I was quite depressed yesterday and still pretty depressed today (I had a rough morning). I'm going to try and stay positive and hopefully my symptoms go away and I have good results at my next annual scope.

My post might have sounded more negative than I intended it to. I have pan-colitis diagnosed in 2006. I have had big stretches of remission for 1-2 years. In fact that seems to be where I get into trouble, thinking that I no longer have UC. I have not flared in 14 months no blood no medications after that one subsided. My flares have been bad, 2 hospitalizations and one involving the ICU due to complications.

My point is essentially you might find that you have considerable control over this. I am not on any meds but take a couple tabs of suflasalazine weekly, daily turmeric, hydrate, spinach, salmon and I also eat a lot of what I consider junk but I also have a list of things I simply avoid like soda's HCFS, sugary chocolate etc. I have worked weeks with 4 all-nighters and no rest the following day in back to back weeks, I am up working a middle of the night crisis now but my career is at an all time high now 5 years into this disease, thinking of buying a new home 4x the size of this one.

You will have ups and downs but you do not need to feel like your life will be one long downhill slide from here. There will be ups and downs and will have to figure out what keeps you mostly on the hilltops. It may be the biggest challenge you have yet to face but its not a death sentence and you can still hope, you can still dream and you can look forward to many more good things to come in your life. Until you feel better it helps to have someone tell you this.
Posted 10/8/2011 11:30 AM (GMT 0)
WingZero,

Sorry you are feeling so down.

As others wiser than me have said, it's a question of management.

You just have to get past the diagnosis and onto its management. Find a routine that works for you that includes: medications (oral and rectal ones), supplements which help, combined with a de-stressor (taking walks, meditation, low exercise), build a support system so that you don't feel alone in all of this - this forum is great for that as the folks here are so supportive and you can vent all you want.

Additionally, you may want to think about adding an anti-depressant to help you get over this hump for now.

There are some nutritional deficiencies which can contribute greatly to depression: omega 3's and niacin are 2 of them.

What do you think?

Posted 10/8/2011 12:34 PM (GMT 0)
I think right now I'm missing the de-stressor part. Prior to this flare-up I was very active - running 4-5 miles 3 times a week, weight lifting, just going out and enjoying life in general. I've literally been chained down to to the bed/bathroom this entire time and I think that is what is setting me back. I want to get back out into the world again at some point but I also know that I tend to push things to the limit and the last thing I want to do is relapse while I'm recovering. :\

I do think I need to have some testing done to see about deficiencies. I'm sure I've got them. I take a multivitamin at the moment but I'm sure I could stand to add some supplements (especially now that I'm on prednisone). Guess I'll be bringing that up at my next appointment.
Posted 10/8/2011 1:10 PM (GMT 0)

WingZero said...
I think right now I'm missing the de-stressor part. Prior to this flare-up I was very active - running 4-5 miles 3 times a week, weight lifting, just going out and enjoying life in general. I've literally been chained down to to the bed/bathroom this entire time and I think that is what is setting me back. I want to get back out into the world again at some point but I also know that I tend to push things to the limit and the last thing I want to do is relapse while I'm recovering. :\

I do think I need to have some testing done to see about deficiencies. I'm sure I've got them. I take a multivitamin at the moment but I'm sure I could stand to add some supplements (especially now that I'm on prednisone). Guess I'll be bringing that up at my next appointment.

I checked that. I was low in Vitamin D3, I was doing sub-q injections rather than oral to ensure my body absorbed it despite a questionable GI. I still flared. I was extremely anemic after the last flare and consumed enteric e + c every morning so I could get back to working out again. I switched meds and got a bad flare to stop. But the biggest change is when I heal after a flare and how I extend that remission. It turned out I was always flaring late summer after being outside a lot and becoming chronically dehydrated. No flare this summer.

I remember that after the worst part of a flare, the pain and constant routes to the bathroom that after your getting better the primary thing I sought was a full nights rest. This delays healing I think. It takes months to get healed, so I would recommend not increasing your inflammation by trying to workout, focus on deep rest ( 5-HTP ) and healing ( Curcumin ). That will get back to working out again. I am running 3 times per week and still trying to not weighlift every day. I may not get a lot of sleep in my current job but its quality sleep and I am not bombarding my body with inflammation from all sides anymore. I learned its 'ok' to skip a day, sometimes two days.

For destress you probably just need an elliptical for a long fat burn ride with music. But at night I still take Restoril 15 mg if I cannot calm my mind and rest. Wears off in 4 hours but helps me begin sleeping quickly. Once or twice per week. Librax is in the same category and it calms the smooth muscle cells of the gut, ask your doctor for some of both.
Posted 10/7/2013 6:02 AM (GMT 0)
I too have pancolitis. It started out as just colitis in the distal sigmoid colon (diagnosed 2/13/13) but my doctor just said to eat more fiber so I kinda blame him for it spreading. I am currently on my third doctor and I love him. Just had another colonoscopy on Friday (10/4/13) and found out it had spread to my entire colon. The pictures are horrible.

I am currently on 40mg of prednisone and nothing else because I am intolerant to mesalamines. The pred works a little but I still have horrible cramps at night and extreme urgency during the day. I go to the doctor tomorrow and I'm gonna start remicade soon. I hope I can start sometime this week.

I just wanted to tell you I know how you feel. Every day I think I can't take it anymore. I've been in so much pain for so long. I'm curious as to why you wouldn't want surgery though? If remicade doesn't work for me I'm going to do humira and then if that doesn't work I think the next step is surgery for me. I would consider it to be a blessing because I would be cured of this horrible disease. The surgeries now have progressed so much that it would be just like having normal bowels and no one would even know. The j pouch surgery only has the ileostomy bag until you heal and then it's all internal. My biggest thing was I didn't want a poop bag taped to my body but now that I know there are other ways, if I come to the point where I need surgery I will embrace it.
Posted 10/7/2013 12:37 PM (GMT 0)
FWIW I was dx'd with pancolitis back in the 80s, had it severe enough to be on IV cortisone twice in the hosputal fir multiweek stays, but then thanks to pred I got myself into a ten year med-free total remission (not even any special diet back then)- and I never tolerated any UC meds other than steroids, at that time. (Eventually, UC did come back and I never shook it again after that until surgery, but I blame abx for that). So pancolitis can still yield full sustained remissions- all the moreso if you can tolerate and do well on maintenance meds like I never was avle to do. Best of luck.
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