the "f" word again

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Elite Member

Date Joined May 2003
Total Posts : 30216
   Posted 7/17/2009 11:19 AM (GMT -6)   
I saw my doc yesterday and requested he take a look-see because I started to have obvious symptoms of a flare two days previous..mucus, gas, stomach discomfort and multiple bms over the course of one day, plus some granular poo/mucus with teeny amount of blood. 
It was perfect timing for once.  The scope he used is only for about 6 inches, and yep...inflamed to that point.  No bleeding, but he said it was probably fragile enough with multiple bms...
So, back to nightly enemas.  I asked him about the twice a week maintenance that many are using on the forum and he said whatever works for the I think that's what I'll taper to and stay there.
My friend died on the 5th...and it was a blessing truly.  I saw her on the Friday before and was shocked in the way she looked like a dark gold mummy....horrific.  It was difficult to get her face out of my mind. 
The funeral was small with invited guests....I couldn't go unfortunately, but my husband did and he was mildly disappointed that no one got up and talked about her and all she did.
The family wasn't even going to put an obituary into the paper....WTH??
So, I'm heartbroken that someone's life who struggled using her strength through the pain to not let any friends see her suffer had no one to say anything about her.
I know I would never let myself go through what she did....nor would I ever allow friends or family to see me that way.  It's confusing to me when the "norm" of death, protocol of funerals, etc has gone awry.  I've learned a lot during these 3 years....noteworthy, but truly deep emotional turmoil.
It all sucks.
*Heather* Status: flaring...Asacol 3 twice daily; Salofalk enemas nightly
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

Forum Moderator

Date Joined Apr 2004
Total Posts : 23551
   Posted 7/17/2009 11:43 AM (GMT -6)   
I'm so sorry to hear about the death of your friend. I'm assuming she's been sick for a long time?

I'm sorry to hear about the flare as well. I hate when our Uc rears it's ugly head at the most inopportune times! Hang in there and I'm sure you will get this under control soon.
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate ALL mesalamines**~Allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis~bulging and herniated discs C5/C6 & C6/C7~Epidural injections (2 series of 3), OA-Celebrex, Tylonel Arthritis and Voltaren Gel
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Veteran Member

Date Joined Feb 2005
Total Posts : 6447
   Posted 7/17/2009 11:54 AM (GMT -6)   
Oh Quincy, I'm sorry to hear about the death of your dear friend. It is sad when people are not remembered for the strength they possessed and the good things they have done. I know the last you saw of her was a tough one, but I'm sure you have many great memories of the times you spent with her; it sounds like she was a wonderful friend to you.
And, I'm sorry you are in the nasty flare mode right now. Instructions to Quincy's colon: Stop it right now! nono Hope you are feeling better soon, Q.

Remicade - will have my 30th infusion on September 2 
Vitamin B-12/Biotin, Probiotics, Vitamin D-3 (2000 IU)
Co-Moderator for the UC Forum

Veteran Member

Date Joined Feb 2009
Total Posts : 7150
   Posted 7/17/2009 12:04 PM (GMT -6)   
I'm sorry to hear about your friend, but it sounds like she's finally at peace, so in all, it's probaby a good thing.

Hope you can get the flare nipped in the bud before it gets bad.
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Apriso (4 pills ONCE!! daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).

Rio in Maryland
Veteran Member

Date Joined Nov 2007
Total Posts : 891
   Posted 7/17/2009 1:59 PM (GMT -6)   
Quincy, Sorry about your friend. There's only so much you can control, so don't take it to heart that her family didn't follow the norms after her death.

Get better soon! And as a wise person once wrote, don't forget to "treat from both ends" (I couldn't resist)
Rio, 33 year old male. Diagnosed with UC in 2006
100 mg Azathioprine (stopped), 4800 mg Asacol
VSL#3 & Primadophilus Bifidus, Metamucil
Vitamin E enema or Asacol suppository occasionally

Veteran Member

Date Joined Jul 2005
Total Posts : 1614
   Posted 7/17/2009 2:12 PM (GMT -6)   
So sorry for your friend and I hope you get your flare under control fast
Diagnosed July 2005 with Pancolitis
Asacol 4 tabs 3 times daily

Veteran Member

Date Joined Dec 2008
Total Posts : 3231
   Posted 7/17/2009 5:34 PM (GMT -6)   
Sorry to hear about your friend. Don't get upset about there not being an obituary. Some cultures don't do obituaries. As for me, I don't want one. Somehow I would feel less important being one among a page full of obituaries.

My boyfriend's mom is not that old. She is in her 70s. Her health and fitness have deteriorated rapidly over the past two years. Her posture is horrible. She has a huge hump on her back and stands with her back hunched over at between 45 and 90 degrees. Her ankles and feet are swollen. She had a knee transplant, spinal surgery, heart bypass, and heart valve transplant--all during the past two years. She is very overweight and has trouble getting out of her chair due to all the weight as well as the knee transplant and stroke she had from the heart surgery. The worst part is that she relies 100% on medicines and surgery to treat her many health conditions: arthritis, high-blood pressure, heart disease, diabetes, osteoporosis, spondylosis, microscopic colitis, degenerative eye disease... She refuses to change her diet or to exercise. She even refuses to do pool therapy, saying that she had a panic attack the last time she went swimming. And nobody says anything, because they don't want to upset her.f
Joy - 47 yrs and counting; Dx Colitis Dec 06 (also had IBS); Currently in remission

Figuring out how to reduce a flare or get into remission is a trial and error experience. Don't expect your GI to have all the answers. He was trained in making diagnoses, prescribing medications, and surgically removing the colon. He was not trained in alternative treatments. That's why they are called alternative treatments.

What works for me: Fecal transplantation, Probiotics, Anti-inflammatory foods, No HFCS, No foods high in fructose, No artificial sweeteners, No pro-inflammatory foods when flaring, Vitamins, Lexapro (for stress).

Old Hat
Veteran Member

Date Joined Feb 2007
Total Posts : 5154
   Posted 7/17/2009 9:31 PM (GMT -6)   
Can you put a paid obituary for your friend in the appropriate paper? Where I live anyone can do that, not just family-- as long as the involved funeral home verifies the basic facts of the death. I did that for a very dear friend whose relatives didn't make any move in what I thought was a fitting direction. People grieve differently so you have to find an outlet to comfort yourself over your loss, if her other survivors aren't in touch with your feelings. As for the big F-- hang in there!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Good if the enemas are helping you again, as much of a nuisance as they can be on a nightly basis. Definitely keep us posted on your situation. / Old Hat (30 yrs with left-sided UC ... [etc.])

Elite Member

Date Joined May 2003
Total Posts : 30216
   Posted 7/17/2009 10:29 PM (GMT -6)   
Hi everyone...thank you for the words of support and kind sentiments. I must clear one thing up...her sisters put a small and most humble obit into the newspaper. The other sister who had breast cancer spread throughout her body as well died 2 weeks before she did (I thought it was only one week but was incorrect). They put an obit for her as well...again, small...and maybe saw it as being fair to each other..etc.

She did deserve recognition, albeit she was a control freak orchestrating situations to work out at the frustration of others. She had a quirky perspective of how life worked....but she did a lot for my mom (lived next door) long before and during her death. I will always appreciate that.

I guess I don't know for sure if she ever said she didn't want an obit...but no one admitted that as of yet.

She was a massage therapist, cranial sacral therapist...and all the other stuff that truly helped me heal from some of my physical ordeals. She had a caring spirit but gave up much of her time for others...but could truly be a pain in the butt sometimes. One had to work hard at understanding what "planet" she was on from time to time.

I and another friend/client will take her daughter (also a client) out for a supper in honour of a restaurant we all went to. I think we'll share some stories and air out some frustrations, give a toast and conclude that life goes on.

Regarding my was definitely better. The salofalk has started to work its magic rather quickly and the bentylol is again doing its thing.

Yep...I'm nipping it in the "butt" fruitgirl..changed it a bit. colon might have heard your threat!! yikes :-)

LOL Rio...I'll take that to heart too...both ends definitely working better.

Joy....I cannot or wouldn't want to imagine having to deal with all your boyfriend's mom is, and I think I'll start back on the Wii Fit tomorrow!!!!

Sherry...she had surgeries, chemo, radiation, etc for 3 years. It was a long haul, but with her way of making it all seem continued as normal.

Old Hat....that's pretty cool you did that for your friend....something I never thought about.

I agree to not be angry...I think just dealing with death in general but with not a lot of experience, it tends to be confusing. There are also many in their 50s that have been dying..and it puts one's mortality in perspective.
I think it's more fear than anger...but trying to figure it out through venting has worked and others' perspectives helps as well.

I'm looking forward to a better week starting Monday..LOL!

Hope you all have a good weekend...
quincy xx

*Heather* Status: flaring...Asacol 3 twice daily; Salofalk enemas nightly
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

Post Edited (quincy) : 7/17/2009 10:32:46 PM (GMT-6)

Veteran Member

Date Joined Jun 2008
Total Posts : 2865
   Posted 7/18/2009 8:48 AM (GMT -6)   

Push the rectal meds - I heard that somewhere! LOL Hope you are back to "normal" soon!!

Anyway, rectal meds - twice or threet times (when I can) a day is working.  It is hard and the combination of Cortifoam and Anusol smells TERRIBLE the next day - but whatever does it. 


Senior - diagnosed with proctosigmoiditis - 6/2008   
Cannot tolerate mesalamines.  New specialist (June) - Cortifoam and Anusol three times a day for now.  Hope it works! (finding it impossible to do three times a day however)
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.

Veteran Member

Date Joined Feb 2005
Total Posts : 1373
   Posted 7/18/2009 5:01 PM (GMT -6)   
Hey Quincy... Just saw your post and wanted to extend my condolences for the loss of your friend... Yes, it's sad that the family didn't say/do more, but if she had many friends like you, which I'm sure she did... you and they know how important she was and that's what matters most.. Probably explains your flare coming on too... I can relate to stress related flares!

Just wanted to let you know I'm thinking about you and I know the memory of a last visit.. but focus on the good times and the vision in your mind you don't want to have will fade eventually and then all you will have is the good stuff... :)

Take care and hug your friends~!! (I love hugs) :)
Diagnosed with U/C January 31st, 2005, IBS on July 21st, 2006 
  Status as of June 30th, 2009 :  Flaring for the last 7 or 8 months with blood, mucus PAIN..... Meds are: Prednisone 60mg daily,  Apriso 2 pills 2x a day.. I take Xanax when needed and Ambien for sleep... Nexium in the am for heartburn..   Culturelle 2 times a day...

Elite Member

Date Joined May 2003
Total Posts : 30216
   Posted 7/19/2009 12:29 AM (GMT -6)   
Hi Susie...yes, hugs are definitely nice..

Thank you for the's probably true that the many friends she did have who weren't able to attend the private funeral were probably taken
aback by the decisions as well, but I'll never know about that anyway.

My flare is improving nicely..just extra bms in the morning, but fine all day.

Elaine...yep..pushing the rectal meds, yeeha!

*Heather* Status: flaring...Asacol 3 twice daily; Salofalk enemas nightly
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

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