Why is my bleeding getting worse?

UC555 said...
Nicecupoftea- That's exactly what I thought but I can't even be bothered to chase it up sadly, I've spoken to her 3 times now regarding this and she's been nothing but dismissive about the enemas. I've no confidence in her whatsoever. Hopefully when I meet the gastro face to face in 2 weeks he's a little more cooperative.

3timechamp- it seems a lot of people have similar results to you with the enemas, hopefully I get hold of some soon.

My advice would be to ask the gastro for a colonoscopy when you see him. I may have missed something, but they seem to be just guessing where your disease is (and by the same token, probably how bad it is too). That isn't on. If you do have pancolitis then rectal meds will treat the left side, but not the transverse or right side, i.e. most of your colon. A combination of oral and rectal meds can treat the whole thing, but might not be strong enough: it depends on how bad the inflammation is.

I'd try to get both too! can't hurt to have extra stuff in your arsenal. I also loved to have suppositories on-hand. The enemas can skip that area at the way end because of the design of the dispenser, the tip is long and skinny, it's meant to go above. Some people intentionally try to squeeze some of the fluid at the end, but for me, suppositories were my go to when I had trouble retaining an enema, or even if I was able to retain it, why not double up to try to treat the largest area possible? I would even use foam in conjunction with all these other medications, sometimes 2 pumps instead of one + a suppository. When my UC was moderate/severe, I couldn't retain anything - I mean, not even for a minute. I really tried to do everything possible to avoid surgery. in hindsight, I watch people talking about putting all this stuff up their butts, while I sit here taking nothing and living like normal and I feel bad about doing all that to myself for so long. What was the point?

You can definitely have a scope while flaring. I did it many times... It's not good for looking for polyps or basic cancer detection, but it can be good to get biopsies and evaluate treatment.

I never get pred side effects until I taper down quite a bit. That's when the insatiable appetite finally starts showing in pounds of awkward, flubber around my mid section and under my chin. Pimples start appearing. Hair everywhere, but thinning on my head. Joint pain. Arthritis. Not fun...

Good luck with the enemas, I hope they help. Flares can get worse when not fully treated, I bet that's what you're experiencing.

Tips for using meslamine/rowasa enemas:

• When you first start using enemas, use them in the bathroom very close to a toilet as they can come up very quick and unexpected. As you get better at them, and more confident, you can administer them in bed.
  
• Add extra Vaseline (petroleum jelly) to the tip of the enema.
  
• Warm the enema up to body temperature before administering. Put it in a pocket for a while before using, or warm it up under an armpit.
  
• Squeeze all of the air out of the bottle before administering. You do not want to inject any air into your bowel as it will both be uncomfortable and make it likely you will need to urgently evacuate the enema fluid.
  
• Lay an old towel down as any drips of the enema fluid can stain clothing, carpet, etc.
  
• Use one of the positions described in the instructions.
  
• Administer the enema slowly, too quickly and you will be less successful. If you wish, you can do one half the bottle first, wait a few minutes, and then administer the rest.
  
• Stay reclined on your left side for about 20 minutes to allow the enema fluid to be absorbed. Retire for the night.
  
• It takes practice to hold the enema in for 7 hours. Do not get discouraged, and keep trying. Even if you evacuate part of the enema, some will likely remain and heal you. As you heal, it will be easier to retain them for longer lengths of time.

I'm using the 4.0gram/60ml enema (and my instructions are for those). Sounds like you have a foam, which is actually a bit easier to retain. I haven't used the foams, but I'm sure others who have will post.

I had a colonoscopy for diagnosis. I had been in a bad flare for three months. The scope was not bad for me. I was relieved when he called three days later to say biopsies showed UC. I didnt really know then what it was. I only knew he was going to give me steroids to get it under control.Not so happy now.

UC555 - you initially mentioned you were going to the toilet 15-20 times a day. That classifies your UC as severe. Going to the toilet that many times is ruinous for both your body (eg blood counts, nutritional levels, body weight) and your life (presumably impossible or near impossible to function properly on a day-to-day basis). The medications are simply masking the underlying issue and the fact you still have bleeding is an indication the underlying disease and inflammation are still very active.

UC is an unpredictable disease .... you will need to adjust to its uncertainties such as the uncertainty of how the symptoms wil fluctuate during a flare (eg you might feel fine one day and no good the next or BMs/blood might fluctuate); the uncertainty of when a flare will start once you achieve remission; the uncertainty of whether or not the medication will work or stop working and the side effects the medication will have.

If mesalamine is going to work, you will notice improvements within a few weeks but the doctors generally wait about 8 weeks before making a call. Best in mind, any improvement you have had might be the steroids rather than the mesalamine meds.

Mesalamine does not work for everyone. Mesalamine did not work for me and I ended up having 15-20 BMs a day. I refused steroids and immunosuppressants due to the risk of significant side effects and the need to take them for life without solving the underlying problem. I elected to have surgery and say goodbye to UC and all its uncertainties.

GC4249 said...
UC555 - you initially mentioned you were going to the toilet 15-20 times a day. That classifies your UC as severe. Going to the toilet that many times is ruinous for both your body (eg blood counts, nutritional levels, body weight) and your life (presumably impossible or near impossible to function properly on a day-to-day basis).

Uh, no. Number of BMs a day isn't a good guide to disease severity, particularly as people have different ideas of what constitutes a BM. (Some people would count passing only gas, mucus or blood or two drops of stool as a BM, while others wouldn't.)

It's quite common to go 10+ times a day if you have proctitis, not least because it has a tendency to create the urges from hell which make you run to the toilet. But if you are barely passing any stool each time, then, while extremely unpleasant, it's not dangerous. It won't make you malnourished or dehydrated. What I can't work out in the topic creator's case is if he has rectal disease or not.

I'm not sure about bleeding. I never had it and my disease was super-severe. I ended up with fulminant colitis, which is the worst form of colitis that you can have. But in general if you have bleeding that means there is active inflammation (or piles) somewhere.

UC555, surgery was a big decision to make and one I don't regret. I was housebound by UC due to the frequency and urgency. I couldn't work, couldn't go to the shops and all the small things in life - like playing with my daughter - were impossible. Life was passing me by. As soon as I took a bite to eat I would end up on the toilet in pain. I was losing weight quickly and I was physically in a bad way.

For me, I didn't want o go through the rest of my life worrying about my BMs or when UC would flare or if the drugs were doing me more harm than good. UC was ruling my life.

Now I feel like I have control again. Surgery was not easy but I'm now eight weeks post-op and the pain of surgery is now fading in my memory. I can now go out whenever I want, I can eat whatever I want, I have regained weight and feel physically better, and best of all i have started to enjoy the little things in life rather than spend my days thinking about poop.

The final decision to draw a line in the sand when it came to medication came about when my GI said two things .... 1. Steroids would not get approved today because of their horrendous side effects ... at the same time he handed me a prescription for steroids. And 2. He told me that lymphoma and leukaemia were risks associated with immunosuppressant drugs but then told me if I got either of these then he would stop the drugs and treat the cancer ..... he made it sound so easy but my mind was telling me that it's too late to stop the drugs by the time I got cancer!

My GI also told me that a surgeon would not consider surgery for me because I had not tried all the drugs. Of course GIs are trained to treat disease with drugs and I suspect his comment was backed by not a little self-interest .... as a sufferer of UC I was good business, guaranteed to be a return customer. However, I insisted on a referral to a surgeon and the surgeon decided my decision to have surgery before the so-called "big gun" medications was reasonable.

Post Edited (GC4249) : 8/27/2016 6:37:24 PM (GMT-6)

Mayo Clinic categorises UC according to several systemic criteria, including number of BMs per day, quantity of bleeding, cramping pains, fever etc. In terms of BMs, mild UC = fewer than 4 per day; moderate UC = 4-6 BMs per day; and severe UC = more than 6 BMs per day.

But these are objective criteria. Subjectively, if the systemic affects of UC are impacting your quality of life then it might be considered severe .... certainly most people going to the toilet 15 or more times a day would find it hard to be functional on a regular day-to-day basis.