Severe flare but no typical symptoms?

[Ian]

As many of you know, I'm facing colon removal in the near future (and not handling it very well), as nothing has been able to control the inflammation this time around. A recent flexi-sig showed that parts were VERY inflamed, and sometimes I can actually feel the inflammation in my rectum - it feels damaged beyond repair.

And yet, what alerted me to this flare was blood/mucus and D - typical symptoms of Crohn's Colitis. Already on 6MP and Humira, we added 40mg of Pred which helped but did not clear it up completely. After 4 weeks on 40mg, my GI told me I'd have to start tapering.

I'm now on 25mg. Every time I reduce, I expect things to get worse. Strangely, my b/ms seems to have improved... for some time now they have been once a day, or once every other day (!), and while not formed, they are solid (lots of little bits that fall to the bottom and don't dirty the water - no liquid). There are no signs of blood and mucus in the bowl or on the tissue paper. What is going on?!

I'm not reading into it. I've seen the state of my colon and know it's coming out soon. But as I've explained to the GI, this is almost impossible to accept when I'm not presenting the typical symptoms - if it weren't for the fact that I know better, I'd think I was on the mend.

Has this happened to anyone else and is there any explanation? I don't see how my bowel can be functioning so 'normally' when it's in such a bad way...

 

[mizgarnet]

Ian,
Crohn's is a strange beast. I am a 20 year veteran in the war with my digestive system. In 2008 I had the flare of a lifetime. I would go thru periods of almost wellness. The doctors did not want to do surgery. I was in pretty bad shape but in the end, I had a resection (after a temp. colostomy). The inflammation did go down but the scarring was advanced in one area. It is possible for the inflammation to go away but the key is the resulting damage. In this 20 years of battle, I have learned to really listen to my "gut" instinct. Ian, I am keeping you in my thoughts. I wish I could wiggle my nose and wipe IBD off of the earth.

Hugs!
Wendy

 

[beth]

Could be the Humira is kicking in.

 

[Domsmom]

I just wrote a similar post! It's too bad we couldn't look inside and find out what's happening every moment!

 

[xJillx]

I am with Beth. You started Humira in December (almost January) and from what I have read, it can take up to 3 months to take effect. I am crossing my fingers it is doing its job!

Perhaps you should ring your doctors and see what they think.

 

[Ian]

I'm not going to cling to false hope. I'm pretty sure that even if that was the case, it's too little too late - think my rectum is damaged beyond repair; and I can FEEL the inflammation there, so the disease is still very much active. But it is very weird...

 

[stella_luna]

Ian, my Crohn's is like that. I never know when I'm flaring. I can feel awesome, normal stools, and no symptoms, but be in a horrible flare. My Crohn's was diagnosed only after I started having recurrent bowel obstructions and the doctors found that I had a very narrow stricture. I had a colonoscopy to confirm, and the doctor said I was so inflamed he couldn't get the scope even halfway through my colon. Yet I felt fine and was having nromal BMs at the time. It makes NO sense at all. I hope in YOUR case you're simply getting better.

 

[Terriernut]

Fail to understand the colon removal comment. Hardly warrants that, as your GI has told you. For those who have suffered for years and have had to have them removed... the most they will do to you at first is try different meds, and then resection you or give your rectum a rest.

Plenty have gone thru some real terrible stuff and are still going thru it and havent had their colons removed yet. You are probably improving, but maybe you just dont want to believe that?

 

[aprilf7]

I was just noticing recently, going though a flare up and having what look like blood clots coming out in my stool, with blood also, does anyone else have this? I am sorry about posting this here, I can't figure out how to write my own post on this forum yet?

 

[Lee]

Hi...if you go to the regular discussion board on the left side of the screen you will see a blue button that says "New Thread"---you can start your own comment with that.

I've had bright red blood clots in my stool before. Within a day or two the clots turned into straight up rectal bleeding--- dark blood--syrup like--it was awful. I'm not saying that will happen to you. You should really watch what your eating and if you begin to have rectal bleeding you need to go to the ER.

 

[bobtheman]

hey ian i hope you dont believe that your rectum is completly ruined becuase both times i have been in the hospital its was becuase of severe pain. i literally couldnt sit down i had so much perianal pain, let alone the pain using the bathroom and then after. i had fistulas in my sphincter and tons of inflmmation/blood down low, and i havent required removal yet. maybe you dont need it maybe the humira is kicking in now. hoepfully you heal up fully and dont require surgery

 

[aprilf7]

Thanks Lee.

 

[Ian]

Unfortunately it was my GI who said colon removal with perm ilesotomy was most likely, because I've failed all the available meds and because my entired colon is or has been affected in the past, they know the disease would only come back after a resection (even if one was physically possible).

I would love to be improving on the Humira, and I'm not complaining that my b/ms are once a day/every 2 days and appear to be blood/mucus free, but this rectal inflammation isn't shifting and doesn't seem like it will (in fact it may be getting worse). I think I'm like you stella - in a bad way but not presenting the typical symptoms. I'm meant to have an MRI of my pelvis soon so that should shed some light on things.