Long vent...frustrated with flare and doc

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mbw1103
Regular Member


Date Joined Apr 2009
Total Posts : 71
   Posted 7/27/2009 5:55 PM (GMT -7)   

After starting Apriso at the end of May, both my doctor and I felt that I achieved remission.  July 4th weekend I ended up with a bad case of strep throat.  Between being sick and things getting very crazy at work, I felt my symptoms creep back up.  I was still having more good days than bad and my bad days over the last 2 months would have been considered a good day six months ago, so I didn’t bother calling the doctor.  Last week things got extremely stressful at work and the last half of the week the diarrhea returned.  To get through the day I took Imodium and figured it would get better when I got a chance to relax over the weekend.  Saturday seemed to go as planned.  Sunday was not as good, but I chalked it up to eating some things for dinner on Saturday that I probably shouldn’t have.  I was visiting my parents (my Mom is recovering from complications from a major surgery) and had a long drive home, so again I took Imodium to be able to make it back. 

 

I woke up at 1 am needing to use the bathroom.  An hour and a half later (all in the bathroom) I was finally able to go back to bed.  My stomach woke me up again at 4 am, but only for 30 minutes this time.  This repeated at 6 am.  By 6 am I was a little more awake and noticed bright red blood in the toilet bowel (about a tablespoon’s worth).  From 6 am until about 9 am about every fifth bowel movement contained blood.  At this point I called my doctor and left a message on her voicemail.   Over the next 2 hours the frequency of the bleeding increased to every bowel movement and most of what was coming out was blood.  I took 2 librax around 10:00 and by 11:30 the diarrhea stopped and it took the edge off of the cramping.

 

I wasn’t expecting a call right away since I my doctor does scopes on Mondays.  At 3:30 her nurse called to get some more info – this nurse is relatively new and doesn’t know my full history like my doctor or the other nurses.  I’m the type that puts off calling, so when I call my doctor knows that something is going on.  It’s also the first time that I’ve had persistent bleeding like this.  The nurse asked me what I wanted her to do – I told her I didn’t know and was thinking isn’t this what you’re paid for, but bit my tongue.  She ended up talking to the doctor and gave me a call back around 5.  Long story short, they said to wait another 24-48 hours and if I was still having symptoms they’d fit me in on Thursday. 

 

Normally my doctor is excellent, but I’m not loving the way that my call was handled or the advice that I was given.  I realize that I’m not losing a lot of blood, but it’s still a bit scary to see the blood in the toilet.  I’d love to have been able to talk to the doctor to understand what might be causing the bleeding and why I’m getting cramping (I usually have pain, not cramping…this feels like menstrual cramps, but it’s not that time of the month).  I’d also feel better if something was being done to try to get the flare under control other than wait and see. 

 

Melissa


33 - Diagnosed with Crohn's in Nov. '05
Current Meds: Apriso, Methotrexate, Pamine Forte, Aciphex, Domperidone, Folic Acid, VSL#3, lots of vitamins/supplements
Gluten free since Aug. '03


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 7/27/2009 10:56 PM (GMT -7)   
Short of putting you on one of the biologics, they don't have a lot of good ways of stopping a flare. I would guess that you are still taking the Apriso? That is the kind of treatment that they would start with so I guess they want to see if taking Apriso will control the problem. I see from your signature that you are also on methotrexate. If those two don't do something for the flare, then they will have to resort to more extreme measures. You seem to know about the stress and diet connection with flares, so this could be considered a textbook illustration of that connection. Once your gut is inflamed and serious D sets in, bleeding is not far behind. It will be connected with the site of inflammation or possibly from hemorrhoids from multiple BM's. Cramping would be from the gut flushing itself out - it messes up the electrolyte balance locally and that causes muscle spasms. Pain is from the inflamed sites and could be near the area of cramping.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/28/2009 6:37 AM (GMT -7)   
Usually when I have a lot of diarrhea I will start seeing alot of red blood.  Its usually from internal hemmoroids getting irritated.  Once the diarrhea calms down the blood goes away.  Not saying this is whats going on with you, but just suggesting that maybe the cause of the red blood.  Usually when the blood is darker it is from bleeding higher up and bright red blood is usually (not always) from hemmoroids.  Keep us posted on what the doc says.
 
Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

mbw1103
Regular Member


Date Joined Apr 2009
Total Posts : 71
   Posted 7/28/2009 4:52 PM (GMT -7)   
Thanks for the info Keeper and Gail...it sets my mind at ease to know what's going on.  I haven't had any BMs or blood since 11:30am yesterday, but my abdomen seems to be getting more tender.  I'll call the doctor in the morning and will let you know what she says.
 
Keeper, I'm still on the Apriso and Methotrexate.  I was on Remicade previously ... I stopped it when we thought it stopped working.  A pill camera later revealed that Remicade had put me in remission and I got a diagnosis of IBS on top of crohn's.  My rheumatologist and GI have been toying with the idea of starting my on another Humira, but are saving it as a last resort.
 
Gail, you could be right...I know I have some internal hemmies. 
 
Melissa
33 - Diagnosed with Crohn's in Nov. '05
Current Meds: Apriso, Methotrexate, Pamine Forte, Aciphex, Domperidone, Folic Acid, VSL#3, lots of vitamins/supplements
Gluten free since Aug. '03


mbw1103
Regular Member


Date Joined Apr 2009
Total Posts : 71
   Posted 7/31/2009 5:24 PM (GMT -7)   
I spoke with my GI yesterday - she added canasa suppositories to my mix of meds and ordered some stool cultures (she wants to check for C-Diff since I was on antibiotics recently).  Since Monday, I'm alternating between not going to the bathroom for 1.5-2 days and then getting diarrhea for 30 minutes....I just need to wait for the next cycle to do the stool cultures.  I'll talk with her next week and we'll decide if I need to come in (long story, but I'm 30 minutes away from her, so it's a pain for me to get there and she's 7 or 8 months pregnant and reducing office hours as a result...it works out best for both of us if we can resolve this by phone).
 
In the meantime, a few other conditions have started flaring, including arthritis (they know it's auto-immune and are still debating as to what type, but are leaning towards crohn's related).  I also started getting what I thought were bug bites Sunday morning.  Last night it dawned on me that they're not bug bites but hives.  I saw someone from my primary care doctor's office this afternoon and she thinks the hives are related since they're mostly located over joints.  It makes sense since the arthritis is worst in my hands and so are the hives. 
 
When I got back from the doctor I talked to my boss about trying to get the stress levels under control.  He's a good guy and took it to heart.  He had a couple of ideas to help get my work load under control.  I also have an assistant starting on Monday, so hopefully she'll be a quick learn and can take off some of the burden.
 
Melissa
33 - Diagnosed with Crohn's in Nov. '05
Current Meds: Apriso, Methotrexate, Pamine Forte, Aciphex, Domperidone, Folic Acid, VSL#3, lots of vitamins/supplements
Gluten free since Aug. '03

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