New to forum not new to UC :-(

This is my story. I am sure it is very similar to others here.. I appologize in advance for the lengthy read and any spelling errors.

about 10 years ago, around age 30, I started having some minimal rectal bleeding daily for about a year before I finally decided to go to Dr. (i know i know too long to wait) this was due to the obvious embarrasment I would be sure to encounter discussing such things with a Dr. They did some tests and thought I may have hemmeroids, which i never had, and decided to do surgery to fix or repair, whatever they did. This did not fix the problem and was a pretty miserable few weeks following. More testing after and a colonoscopy also(don't even get me started on the embarrasment on that) it was determined I may have ulcerative proctitis due to the area of inflamation. I never had any pain or unusual bowel movments this entire time. I was put on Asacol, and canasa suppositories at that time also (another huge blow to my pride having to take meds rectally) and within a month or so I was back to normal.

All was good for 2 years and I took the Asacol once in awhile every 2-3 days (i hate taking pills). I started having bleeding again with no pain or change in bowel movments or frequency of so back to the Dr I go (it was somewhat easier this time, but still embarrasing) and it was decided to do another colonoscopy. Again the affected area was lower with the rest of colon good. I beleive I was borderline with Colitis due to area involved (if I am wrong about the difference in the 2 UC vs colitis being in the location involved I appologize but this is how Dr explained it to me) so they put me back on cannassa and possibly another med I do not remember for sure and told me to take asacol as prescribed not whan i felt like it. Few weeks later all is good again. I took my asacol as directed for 6-8 months or so @ 6 pills daily. I still didn't want to accept that I had a disease that would be with me the rest of my life.

I stated taking 2 asacol pills daily for the next 6 years with no trouble at all, no bleeding no nothing. I was so happy thinking I do not have this disease!! I started taking asacol every 2 days @2pills  for the next year. If I suspected I was having bleeding (which was always minimal) I would take the 6 pills daily. I started having bleding again, which was not controlled by increased asacol so I decided to make an appt. with a GI Dr. I had never really kept in touch with a GI Dr and was told only to call if I started having problems again (which is exactly what I wanted to hear at the time!!). It was 2 months until I could get in to see the GI Dr this time, during which the bleeding became worse and the water in the toilet was actually bright red with blood. I also started having LLQ abdominal pain and cramping and the frequency and urgency that I had to have a bowel movment was increasing. This time it is actually starting to affect my lifestyle, I guess this may be a flare?? I have never had these symptoms associated with this. I am a full time Firefighter/Paramedic and having to spend a lot of time in bathroom is difficult, not to mention I didn't want to open up to the guys and tell them what is going on as i have kept this to myself and my wife since day 1. Finally I had no choice as I was going to the bathroom 7 times daily prior to noon and I had to tell the guys on my shift something so I told them as much of the truth as I knew at this point, and they were great about it and also concerned. I was also concerned and thinking to myself, man could this be cancer?? Of course then I go on the internet and the symptoms are similar so then I get totally freaked out. I started to make sure all of my affairs were in order, etc. just in case the GI told me what I feared the worst.

By the time I got to see her I was so miserable I was ready to step in front of a train, (I would never do this, but I felt awful). I had to stop twice during the 40 minute drive to use bathroom, the urgency was so severe that I had to find a bathroom NOW whenever I felt cramping and had been this way for 2 weeks. She put me on prednisone, much to my dissapointment as I have heard some bad things about it, at 40mg taper. Also she changed my Asacol to Lialda @ 2-1.2gm pills daily. She scheduled another colonoscopy (by this time I am a pro at these) but the soonest appointment wasn't for 3 months. I got no relief from the new meds the first month, so she told me to continue the 40mg until I was "back to normal" then taper down. After 6 weeks at 40mg prednisone I stared feeling normal and did the 3 week taper. I felt great!! Until 2 weeks later and it stared again :-( She ramped be back up to 40mg prednisone, added a liquid steroidal enema that I can't remember the name of now and instructed me to take until further notice. I was able to get in earlier by a few weeks for colonoscopy. This time the inflammation was located between 12 and 18 cm, slightly further up than 6 or 7 years ago, but rest of colon looked good. No cancer Thank God, but a reality check when she told me I indeed did have UC not proctitis, I of course tried to argue with her and convince her I did not, but after awhile and studying lab tests I finally gave in to the fact that I had a life changing disease that will be with me forever. Now What???

I continued on the prdednisone and lialda and liquid enema with no real relief from bleeding, the cramping and urgency subsided but still bleeding. I hated being on prednisone!! I was mostly symptom free 2 months ago finally for 2 weeks after the taper but started ap again. I have never had these symptome be so hard to control in my entire 10 years with this. I was afraid to call GI because I know whe would put me on prednisone again, but had no choice.. She was on vacation when I called so I spoke to her nurse which is whom I spoke with during every call and she was super!! She really made a difficult time for me easier!  She spoke with another Dr who prescribed Mesalamine, not prednisone and told me to take 3 lialda daily not 2. This actually seemed to do the trick!! I had about one month free of issues. I started noticing smal amounts of bright red blood in stool again every few days a few weeks ago. I uses some of my cannassa which seemed to help. But now on vacation as I write this I am having issues again that cannassa isn't helping. The bleeding is minimal but the frequency and urgency are returning and I fear I am heading for another full blown flare if thats what I have experienced in the past.

I thank all who have stayed with this lengthy story that was kind of embarrasing to write but I needed a place to turn for advice and figured the best place would be among people with the same or similar problems. Which brings me to my questions...Am I having a flare?? I never had one explained to me so I do not know the symptoms, and is this a severe one or do they get worse than what I have described? Is this normal to be so many years with barely any trouble then to go 10 months so far without returning to baseline for more that 2-3 weeks a few times? I had better luck with the Asacol than Lailda and took a whole lot less, is this just coincidence or is there a chance that if I switch back I may get back to normal again?? I am sure I will come up with more questions.

Thank You so much in advance!!

notsosicklygirl said...
Hello & Welcome,

You should probably use paragraphs in such a long post, it was a bit difficult to follow but I get the jist. It all sounds too familiar, I too was diagnosed with Proctitis. I was 27 and healthy, had some rectal bleeding, they thought I had hemorrhoids, I had a flex sig and it turns out I had proctitis. I was given Canasa and sent home. A couple years later, the Canasa wasn't helping and I went into a massive flare up where my whole colon was involved. At this point, I started on 9 Asacol a day. This had me in a stable remission for a year to a year and a half. At that point, I had a massive flare up while on Asacol, I increased to 12 pills a day, the max (4800mg). This didn't help and I had to start on 40mg pred... The only difference in our stories is that I couldn't taper off prednisone without my symptoms returning.

It sounds to me like you need to start a different medication if you're not staying stable on Asacol or Lialda. I believe that you can do better on Asacol than Lialda and if you feel like you were better off on Asacol, I would switch back and I would take the max dose (12 pills a day, 4am, 4 afternoon, 4pm) and I would add rectal meds, steroid and Rowasa. If this doesn't help at all, you may have to go back on prednisone. If you're on Prednisone and you get better but you flare up shortly after, your UC is not well controlled with the medication you're taking. At this point, the GI should be mentioning the next step in treatment. You could try Imuran or 6mp or Remicade - these all supress the immune system. You could also go the alternative route. Immunosupressants are not ideal, you could be more susceptible to infections and certain cancers but the risks are low. The alternative therapies are less invasive but also less studied and not covered by insurance many times.

Could it be worse than you've seen? I think it probably could. I was going to the toilet about 15 or 20x a day at once point with massive cramping, urgency and pain. Are you at this point? I Had also lost a lot of blood and I was almost at the point of needing a transfusion and hospitalization. It can get pretty severe if you don't get proper treatment.

You know, your story reminds me of another poster here, Anthony1977. He is also a firefighter and he had a severe case of UC. He ended up having j-pouch surgery and he is doing incredibly well. You may want to get in touch with him, he is awesome and quite funny.

Canasa is not the best rectal med for you, it only treats the last few inches of the rectum. It sounds like you could do better with an enema but at the same time, even an enema may not be able to help if you're experiencing moderate symptoms.

No need to be embarrassed here, we all relate 100%. If I can help with any other questions, please feel free to ask :)

Thank You for the info!! I went back and tried to make my original post more reader friendly, hope it worked. Very good advice on the medications, I know my GI has never mentioned some of them. She is actually a PA working under a GI Dr I guess. I am getting frustrated with her and may switch to another one. I will look up Anthony1977 on my travels here. Thanks Again!!

wordnerd said...
Hi Deuce,

From what it sounds like, you may be having a flare.

So, to summarize, it sounds like you may be having a flare, but only you can judge if it is severe or not. My severe is blood + 20 bathroom trips, where as someone else's severe may be no blood and 10 bathroom trips. I think the important thing to do is not panic, keep up your fluids, monitor yourself to see if things are getting to the point where you need medical intervention, and try to ride it out. This disease totally sucks, is disruptive, and just a plain nuisance. But if you can keep a positive attitude (which I know is super hard), you will get through this one and any other that may or may not come along. It is totally normal to have years of no activity and then go into a period of frequent flares. That is part of this thing. Some people are lucky in that their years of no activity may equal the rest of their lives...that is what keeps me going. I just think that during periods of wellness I may be staring a period of remission. Unfortunately I can't comment on the medication switches since I have only taken the one that worked until (I'm assumming) the disease spread out of reach of what the suppository can help, but I am sure there are others on here who can help with that.

You've come to the right place! All of us with IBD have to stick through it together because it is hard for people without the disease (or that don't see what you go through) to understand, which makes the experience all the more isolating. Like I said, try not to worry. I find worrying makes the symptoms worse.

Thank You! I guess my worst days maybe are not as bad as some peoples, and for that I am thankful! I hope you are able to keep yours under control. It sounds like a lot of similarity in the flares. Thanks Again for the helpful info!

Anthony1977 said...
Hey, duece1024. Love the nickname. Trust me, I dropped many of those in my pants. Reading your post brought back all of the memories I had when I started out with this. You did a good thing by telling your brothers what was going on. They were actually the first ones I told because they broke my chops all the time from being in the lou every ten minutes. Like my family, they were extremely supportive. This site will also prove to be that support system as well. I probably would have been committed if I didn't find this outlet on this site. Sometimes it is nice to limp with another limping person.

With regards to being a firefighter, I couldn't do it anymore. The last fire we had I passed out on the lawn due to extreme blood loss, anemia, and dehydration. It was a vicious cycle. One which landed me in the hospital 5 times within 1 year. It was the pinnacle moment that something needed to be done. Medicines weren't helping and I tried them all. That was a year ago. Today I am back, and better before. No more accidents, embarrassments, and I can last through a pack of underwear for more than a week. I went for the surgery never looked back. I am not 100% free of issues, but I am 100% certain I made the right decision.

I am not sure where you are located, but make sure you get yourself a good GI doctor. One that wants to work with you and listens to your needs. Don't settle for less. I went through 3 of them before finding my current one. If you need anything, shoot me a PM and I will try to help out as much as possible. There is a light at the end of the tunnel. Stick in there. Stay low, and stay safe!

Thanks Brother!! Glad to hear the surgery was a sucess!! I am going to look into details about it, I am not to that point yet, but one day I may be. Once a firefighter always a firefighter my brother! It's a good thing you made it out before you passed out!! I am down in Florida on vacation and we had a big house fire back nome in which 2 of my brothers were injured in a roof collapse. This site is turning out to be great, I am already mentally felling better than this morning! Thanks again!

quincy said...
Methotrexate?

Great you got the new med 'scripts. How many asacol will you be taking? 8?

I'm assuming you'll be on the Rowasa nightly till you see the doc. I do hope thyt work well for you.. the goal should be to stay off the prednisone.

If they work well, you'll need more refills to do the tapering and maintenance.

q

Yeah That sounds like the medication she said, it was something new to the person who took my blood, she had to call to see what tube to use etc. must not be a very common blood test. Sounds like if the rowasa doesn't work she wants to put me on Methotrexate if my body can metabolize it, if I have the enzymes needed to be determined by the bloodwork.

I will be on 4gr. Asacol. I have been on 3.6gr Lialda per day. Yup, the rowasa will be nightly, mostly ( pretty tough to do at work so may use canassa then )

I definatley want to stay off prednisone, I get kind of mad whenever they mention that to me. I think it made a big difference that I asked for meds by name and asked to go back on what worked in the past because she listened to me. I have to see her in 3 weeks now also.