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First post, newly diagnosed with questions.

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Ulcerative Colitis
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Posted 11/13/2013 1:39 PM (GMT 0)
Hello all, I was diagnosed a few months back with UC of the entire colon and I was wondering if my symptoms were consistent with other UC sufferers. I had some diarrhea issues about 5 years ago. Went to PC doc and she ordered CT scan of entire abdomen. Everything checked out ok except I was told that my colon was a little swollen probably due to virus. I believe this is when UC entered my life. Soon afterwards my diarrhea cleared up and I was good to go until about 6 months ago. I did experience a change in stool consistency about 5-7 years ago where I started getting a lot of BM's that were like soft serve ice cream/mashed potatoes in consistency but no urgency. Then last March while in Vegas on vacation, I started having the soft serve ice cream BM's with severe urgency. I mean I had to run away from the craps table (no pun intended) in a near sprint just to barely make it to toilet. This would be preceded by severe cramps but cramps were gone as soon as BM was complete. While in Vegas I was going 4-6 times a day.
So I get home thinking I just have a stomach bug that will pass. I was working out in the yard one day, felt cramps come on like a ton of bricks and could not make it to toilet, crapped all over my self. This has happened two other times in the last 6 months. After 1st crap on myself episode I go to doc. At the time I was going 2-3 times a day bua ALWAYS in the morning before Imleft the house. Orders CBC, fecal occult test and others. All came back good but blood in my stool that I had never seen. Go to GI and colonoscopy shows pan colitis and Doc says he is surprised my symptoms were not more severe. He puts me on prednisone and lialda. Symptoms began to clear ie. more formed stool and no urgency. Finished prednisone and symptoms came back. Another round of prednisone and symptoms cleared since. Still taking lialda and go 1-2 times a day with one always in the morning with in 30 mins of waking up and this is the more urgent BM of the day.
So my questions are this 1) Do my symptoms sound consistent with what others with pancolitis sufferers have experienced? 2) When do you consider yourself in remission? 3) Currently only taking lialda and BM's are pretty much under control but still not like they used to be where I could put a BM off a whole day if I wanted to. Anyway, Doc wants me to start 50 mg of Imuran and I am wondering if the risks of this drug are worth taking right now when I am not that bad off? The warnings of this drug are pretty darn scary and I recently was treated for prostate cancer. 4) Does the anxiety of being stuck in traffick or being in a situation where you can't run to the bathroom ever leave? To me it seems this anxiety only makes my gut more active and makes the urgency worse but I can't help it. 5) I was diagnosed at 39 years old. Isn't this a little late in life to be diagnosed with UC? 6) When UC sufferers say diarrhea are they meaning watery and bloody diarrhea or the soft serve Ice cream mush that I seem to produce? It is either that or little chunks of oddly shaped poop.
Thank you for any Insight.
Posted 11/13/2013 1:51 PM (GMT 0)
Hi and welcome. Here are my answers to your questions.

1) Do my symptoms sound consistent with what others with pancolitis sufferers have experienced?
Your symptoms actually sound pretty mild, considering you have pancolitis. I was also diagnosed with pancolitis, but I was having 15-20+ extremely urgent BMs a day. I also lost a lot of weight, had rapid pulse, extra low blood pressure, and a fairly frequent low-grade fever. I didn't have too much blood and I had zero pain. Many others with UC have a lot of blood and pain.

2) When do you consider yourself in remission?
Yes, and have been for over 4.5 years now; both symptomatic and clinical (i.e., scope showed zero inflammation).

3) Currently only taking lialda and BM's are pretty much under control but still not like they used to be where I could put a BM off a whole day if I wanted to. Anyway, Doc wants me to start 50 mg of Imuran and I am wondering if the risks of this drug are worth taking right now when I am not that bad off? The warnings of this drug are pretty darn scary and I recently was treated for prostate cancer.
Your doc, IMO, is a dumb@ss for wanting to put you on Imuran. IMO, you need to try mesalamine retention enemas first. To me, it sounds like you've got some rectal inflammation left (which is causing the urgency) and rectal meds are the absolute best way to treat it. Jumping to an immunomodulator w/o giving rectal meds a shot is just plain stupid.

4) Does the anxiety of being stuck in traffick or being in a situation where you can't run to the bathroom ever leave? To me it seems this anxiety only makes my gut more active and makes the urgency worse but I can't help it.
I have zero anxiety about being close to a bathroom. I had some when I was flaring, but it quickly went away after getting into remission.

5) I was diagnosed at 39 years old. Isn't this a little late in life to be diagnosed with UC?
No. You can be diagnosed at any age. There's a peak from ages 15-30 and again at 50-70, but I think it's a little silly, honestly, to have 15 and 20 year "peaks."


6) When UC sufferers say diarrhea are they meaning watery and bloody diarrhea or the soft serve Ice cream mush that I seem to produce? It is either that or little chunks of oddly shaped poop.
Diarrhea is more defined by your total daily output than it is by the consistency of your poop. One of the tests my GI did when I was in the process of being diagnosed was a 24-hour stool collection. He wanted to measure (weigh) how much "output" I was having on a daily basis. However, I tend to think of diarrhea as being the watery stuff, and the soft serve stuff just really soft poo.
Posted 11/13/2013 2:07 PM (GMT 0)
I was diagnosed at 36 years old. I would add rectal meds to your regimen. I think that would help with the last bit of urgency that you still have.
Posted 11/13/2013 2:21 PM (GMT 0)
1. Those symptoms are more or less in line with the disease. No two people seem to be exactly the same.

2. I have a strict definition of remission. If you aren't totally normal as in before UC then you are not in remission.

3. I am in a similar situation and refuse to take any higher tier drugs when I'm doing fairly well, even if not in remission. I personally don't think it is worth the risk. Maybe I would re-evaluate if I were to get worse. Also, many, if not all, treatments quit working at some point or other so I believe it is better to keep some of these treatment options in your back pocket. I have seen those who buzz through all kinds of treatments in a relatively short period of time and then they are really stuck with limited options. For those that are doing fairly well such as you and I, I believe far too many of both patients and doctors are too obsessed with complete and total remission at the expense of the side effects of these horrible drugs.

4. We've all been there done that. I am doing better now than I have ever done and feel very comfortable at this current point in time but it is very hard to put that anxiety in the past. To this day, when I am home, I often run to the toilet just to expel gas only because when I was worse you just could never take the chance.

5. There seems to be clusters of diagnosis centered on in your twenties and then another cluster around the fifties. But, it can happen at any time.

6. I think diarrhea is diarrhea and soft mushy stools are soft mushy stools. I'm not sure what others believe. One thing I would like to add though is that even if you are 100% normal in every other aspect of UC, consistent soft mushy stools with a UC diagnosis means you are not 100%. It's just waiting to zap you the second you let your guard down. This means you should continue with a treatment plan (like Lialda) forever, even if you feel you have been in remission for 25 years. I can't tell you how many people post here because they got better, went into remission, quit their meds, and down the road the have a relapse. Often these future flares get harder and harder to treat, requiring higher and higher tier drugs because what worked before often won't work as well again or maybe not even at all. It is far better to take a fairly benign drug like Lialda forever than have to take the higher tier drugs a few months or years down the road because you have relapsed.
Posted 11/13/2013 2:23 PM (GMT 0)
I was diagnosed in my 40's. I think there is no age out of the realm of possibility for this disease.

As for the anxiety. I sometimes think the "loose bowel" feeling related to anxious feelings is not anxiety at all, but is a symptom of an unhealthy colon that feels identical and we read it as anxiety. If you are feeling urgency then as fruitgirl said, you likely still have inflammation lower in your colon and the mesalamine enemas will help.

Feeling a lot better is not the same as being in remission, but you may still be healing so I would hold off on the Imuran decision a while longer. If you start to backslide there are even other meslamines to try. The key I learned is not wait to act if you notice any increase in symptoms for the best chances to nip in the bud a flare.
Posted 11/13/2013 4:11 PM (GMT 0)
Thank you for the replies. I had never heard of mesalamine enemas. I assume they are by prescription only? It is funny the mentions of me probably having rectal inflamation because this seems to be the only area I have had cramps or discomfort this whole time, right behind the bladder. Doc knows this and has never suggested the enemas. From what I read I should be monitored with CBC and liver function tests while taking Imuran. Doc did order initial tests but said nothing about follow ups to monitor? Just come back and see him in 4 months. Seemed strange to me. Am I wrong here or do I need to talk to another doc? Thanks
Posted 11/15/2013 2:34 PM (GMT 0)
Talk to another dr. It doesn't seem, for what you are describing, that you are bad enough for Imuran. Either that, or have a talk with your dr and tell him you don't want to take that stuff just yet.... You want to try the rectal meds first. Sometimes you have to speak up and be your own advocate. Maybe the dr has a specific reason he feels you need such a strong med? Have a good talk with him.

What you are describing sounds like typical mild UC stuff. I never saw blood in my stools, but I'm sure it was there. Soft stools are typical in a flare. You don't always have the watery diahrrea. When you are in remission, you "should" have more formed stools, but they will probably not be completely normal again... A little on the soft side. But again, everyone is different.

I no longer have the anxiety of being out in public or riding in a car because of urgency. With remission, that urgency is much less... But I still have to get to the bathroom fairly quickly when it's time to go.... And it usually is at around the same time each day.
Posted 11/15/2013 3:51 PM (GMT 0)
Hi cdm

There are 2 issues at play here: your inflammation is extensive (pancolitis) however your symptoms are not extreme. As patients we only care about the symptoms not what the colon looks like but thats what doctors are most concerned about, the physical aspects.

Yes you should be using rectal enemas which will likely help your urgency symptoms and reduce rectal inflammation. Most of us think that inflammation starts at the bottom and moves upward in the colon.

You are right to question the side effects of Imuran. However untreated inflammation can lead to dysplasia, polyps and even colon cancer. It's a rock and a hard place decision.

Look into what else you can do to reduce inflammation without Imuran. The bonus is your symptoms will get even better but also keep your eye on what the scope says about your inflammation.

P.S. I'm kind of the opposite of you, very bad symptoms when diagnosed and yet c-scopes didn't look that bad. Doctors never seemed to take me very seriously about symptoms.
Posted 11/16/2013 12:46 AM (GMT 0)
Hi CDM

Reading your post reminds me of myself in a way.  I think I had UC for many years, but went undiagnosed because by the time I had a scope done I was already in remission or the doc didn't know what he was seeing (lived in small town with small town docs).  It really flared 2 1/2 years ago (shortly after I quit smoking and lost lots of weight). 

I am on my third doc now since being diagnosed and will probably be looking for a new one soon, as this one just does not communicate with me.  I have learned so much more from these forums, than I ever did from two of the three docs.  (The one I liked moved). 

The doc I liked said there are two approaches - start at the bottom with the rectal meds and stuff or start at the top and hit it hard.

Each of the three doctors saw something somewhat different when they did the scope, and I really do not have a good answer for that either - # 1 said left sided uc.  #2 (the one I liked) said pancolitis.  #3 says left sided uc. 

Doc #1 said take Apriso and see me in 4 months.  He didn't respond appropriately when Apriso caused me unstoppable urgent watery d. (Which I didn't have before his colonoscopy). Doc # 2 did all kinds of blood tests which showed all kinds of vitamin deficiencies and blood abnormalities as well as CT scans and MRIs which also disclosed a kidney cancer.  She had me try canasa, rowena or something, 6mp, but only prednisone helped.  Doc # 3 has me on 6 mp and remicade. 

I have gone through all the meds and am ready for the surgery, as I am in such misery all the time.

Read everything you can from these and other forums, so you know what you are dealing with and be sure to have a doctor you can talk to. If you have to go to a bigger city, it is worth it.

Posted 11/16/2013 2:46 PM (GMT 0)
I had/have the exact same symptoms as you did/do.  The only difference is I'm 35.  The enemas, as suggested by others is a good idea.  They have helped me some but I'm not 100%...closer to 75%.  I am "stuck" on 6.25 mg of pred though.  If I stay stuck on the pred my doc wants to try Remicade or MP-6.
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