One Month W/O Meds

[xJillx]

It’s been a full month of having my Crohn’s diagnosis retracted and stopping treatment (for the full scoop on how this went down, check out my original thread: http://www.crohnsforum.com/showthread.php?t=27374) and, of course, I had a really lousy day.

Today, I had one of my typical “flare” days, where I was in and out of the bathroom many times simply passing mucus. After about the 5th trip to the bathroom, I noticed some small traces of blood in the mucus. I don’t think this sounds like IBS…

I’ve been struggling with mucus and rectal pressure for about a week or so. However, ever since stopping Lialda, my stool has become much more solid, and I am only going once daily. I still have sometimes have mild cramping before going and/or urgency, but not nearly as bad as while on the drug. So, that has been an improvement. I don’t think Lialda was agreeing with me. When I first started it, I had the worst week ever. I thought it was coincidental, but now I think the Lialda was intensifying or causing many of my symptoms. I have read it can cause side effects that mimic IBD. However, was it still keeping the Crohn’s in check, hence all the clear scopes?

I have an appointment with my GI on January 6th, if I don’t have to see her sooner. I am hoping to have a scope at that time or shortly after, and perhaps that will give me some much needed answers.

 

[Entchen]

Hi Jill: So sorry about a tough day today. That doesn't sound much like IBS to me, either (sure, our bodies are weird and wonderful, or maybe just weird, but diagnosis requires some sort of consistency between symptoms and attached label). Take good care.

 

[Cat-a-Tonic]

Jill, I'm sorry to hear this. I knew you'd been having some bad days recently and it sounds like things are really going downhill lately. I hope you can hold out until that appointment in January. Please, do call your GI if you continue to feel worse, especially if you start to question whether you can wait until that appointment. As my GI always reminds me, a phone call is free.

I'm on Asacol, and I've heard the same things - that the side effects can include stuff like diarrhea, nausea, abdo pain, etc and in some cases the side effects can essentially mimic IBD-like symptoms. I'm guessing that the side effects of Lialda are similar to Asacol, since they're essentially the same drug. How odd though, that it may have healed you but at the same time made you feel worse!

Hang in there, sending you a big hug! I hope January comes quickly - and that you survive the holidays without getting worse!

 

[Misty-Eyed]

Aww Jill. That sucks that they think it's IBS. I'd say it really doesn't sound it with the blood and mucus. Don't let yourself get too ill till you go give your doc some hell. Hugs!

 

[Terriernut]

Jill, this stinks that you have to go thru this at all! Blood and mucus...come on, this is not IBS! You really should push for an earlier appt, I really dont think its ok to wait! You've been through enough!
:hug:

 

[xJillx]

Yeah, the mucus and blood isn't good. By my GI doesn't seem concerned. She says mucus is a sign of IBS, and the blood (since it is so little and rare) could be caused by irritation. I think the easier explanation is I have IBD, but what do I know.


I know I should be more proactive about this. I don't know why I am not. I guess since I am not doing too bad, that I just want to put it out of my mind for a few weeks and to try to enjoy the holidays. Also, I am a bit scared. I know more testing will be needed, and I am tired of it all. Of course, I pray my laxed attitude doesn't cause me more harm in the long run.

 

[Terriernut]

Well, Freya here has all paws crossed that you dont do any harm, and I have my fingers and toes crossed for you as well!

You are tired Jill, and fed up, and thats why you arent being proactive. We all get to that point. We cant fight all fronts at the same time, and sometimes we just need to rest and hope and pray for the best.

I am sure hoping you are able to sail through the holiday season. I hope that nothing happens, because you DESERVE a break. But I know, you will get your fighting spirit back.

And frankly, I would ask what medical texts she is reading about the blood and mucus!!??
Misty

 

[Mayflower537]

Our docs must have gone to medical school together bc mine also discounted passing mucous as anything of any significance. He said that the colon just produces mucous normally. But I don't think overproduction to the point of passing ONLY mucous is normal bowel function. Jill, I hope you will be alright until your doctors appt.

 

[xJillx]

From my research, visible mucus in a BM is not normal. However, it does seem to be a symptom of IBS. Granted, the blood, though as minimal as it may be, is not associated with IBS. So, it really baffles me that my GI at a top hospital in Philly can confidently say I have post-infectious IBS when I have passed blood.

Thanks to all for the kind words. I hope I can enjoy my holiday season and get some real answers in the new year.

 

[xJillx]

It now has been a full 2 months off meds. I had been doing relatively well, but I have seen a bit of a decline recently. I am still only going to the bathroom once daily, and it is more formed than when I took Liada. However, the mucus has increased, and I see traces of blood in the mucus.

Other symptoms include on and off rectal pressure and swollen mouth. Also, I have been dealing with daily ab pain for the past week or so. The pain moves all over (left, right, LRQ, LLQ), so I wouldn't say it's in one specific spot. To be honest, I have been having issues with my monthly cycle, so I am not sure if that could be the cause (posted in the Females-OB/GYN subforum).

I have been trying to schedule a flex sig during my next GI appointment on January 6th, but I haven't heard back from her yet. I'd like to know what the status is of things in there.

I am just crossing my fingers I won't decline too badly. I really want to enjoy Christmas with my family.

 

[Terriernut]

Oh Jill. It does sound like you need a full scope done. (i know...JOY!...NOT) I wonder if they arent truly trying to get you to flare!?

I hope that you can get in soon, and get this sorted. But I especially hope you are able to enjoy Christmas with your family.

:hug: