6mp-cervical dypalsia

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rey
Regular Member


Date Joined Nov 2007
Total Posts : 344
   Posted 7/23/2009 7:22 AM (GMT -6)   
my daughter has been symptom free for the last year plus, however she has gotten many colds -strep throat-staph infection-
all have been managed and she has been enjoying her life to the best of her ability- working hard in school and getting amazing grades, happy with
a boyfriend for the last year...and we were coming to terms with the drugs and the dangers they pose-
now she has cervical dyslasia and the dr said she will have to come off the 6mp and hope that the 5asa drugs work for her-otherwise she will probably need surgery.

this sounds so cut and dry-i can't believe that it's the only option so soon-if she flares- and the dr said it would only be a matter of when, but no more immunosuppressants.

also, she is on colazol i don't know if it's a 5asa, but it can't be increased like asacol or lialda because it has an increased risk for diareah- but originally the asacol didn't work!

while all of this was going on i asked the dr to check her celiac test again because my nephew is being checked for this now and when she was flipping through her notes she saiid
she's negative for celiac but is lactose intolerant! wow she never told us that when she did the original colonoscopy
and all the original blood work--that's over a year ago and my daughter eats cheese and there is dairy in everything !

there has to be another way!
thanks
Mom to 20 year old daughter diagnosed 11/07.
colazal 3 x3 daily
purinethol 6mp=50mg daily
culturelle probiotic 2 daily
chewable vitamin
xifaxan antibiotic 400mg 2x day soon to be weaned-done
today 2/13/09
yaz birth control pill for cramps started around 2003


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5396
   Posted 7/23/2009 8:12 AM (GMT -6)   
I am sorry you have having to go through this with your daughter. I would suggest getting a second or third opinion to make sure everyone is in agreement with the idea of discontinuing 6mp.

If your daughter cannot maintain remission on 5ASAs you might want to consider surgery. I know it sounds scary but it would put an end to UC as well as to the cycles of drugs. She's got a lot of life yet to live and having dyslpasia of the cervix and UC is lot to deal with for anyone much less a 20 year old. While you are trying to digest this news you also might want to consider a consultation with a CR surgeon. Find the best one in a metropolitan area; or go to www.j-pouch.org for a recommendation. Having a consultation with a surgeon does not commit you to having surgery but will answer questions and help you to understand the process in the event you have to go that route.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Red_34
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Date Joined Apr 2004
Total Posts : 21968
   Posted 7/23/2009 8:15 AM (GMT -6)   
Is your daughter having frequent blood testing to be sure her WBC is not dropping? If her WBC is low, it can account for many of her infections. I can't really comment on the cervical dysplasia since I am not familiar with that as well as complications from 6mp. Who discovered the dysplasia? And yes, Colazal is a 5-ASA but it's called Basalazide instead of a Mesalamine which is what Asacol and Lialda are.
 @--->--SHERRY--<---@
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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rey
Regular Member


Date Joined Nov 2007
Total Posts : 344
   Posted 7/23/2009 8:55 AM (GMT -6)   
her white count was in the normal range a few weeks ago , i'll find out the new one today-they went up with the staph
but came back down- gynocologist found dysplasia-

does everywoman with cervical dyspalsia end up off immunosuppressants, what about cancer patients on chemo?

thanks
Mom to 20 year old daughter diagnosed 11/07.
colazal 3 x3 daily
purinethol 6mp=50mg daily
culturelle probiotic 2 daily
chewable vitamin
xifaxan antibiotic 400mg 2x day soon to be weaned-done
today 2/13/09
yaz birth control pill for cramps started around 2003


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 21968
   Posted 7/23/2009 10:04 AM (GMT -6)   
Cervical dysplasia is simply precancerous cells found on the cervix. Many women have this and sometimes they just watch it and other times they "freeze" the precancerous cells. There is a higher chance of it becoming cancer but it is not cancer yet. The immune suppressors can lower the body's resistance to fighting this off but it also can cause complications when the dysplasia is dealt with. However, I have had several out patient surgeries in which I was on 6mp and never once had I had to come off of 6mp. She may of had the dyplasia even without being on 6mp so it can not be assured that it came from the immune suppressor.

I think if I was you, I would go in for a second opinion. Have you or your daughter talked to her GI about this?
 @--->--SHERRY--<---@
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
To help Healingwell - click here: DONATE
 
 
 
 

 
 


rey
Regular Member


Date Joined Nov 2007
Total Posts : 344
   Posted 7/23/2009 10:24 AM (GMT -6)   
hi sherry,
thanks- it was her gi who said the 6mp is not good for her - with the infections (staph this summer-but gone now) but the dyspasia was the icing on the cake
she needs the colposcopy to dertermine the degree of the dysplasia , i know it doesn't come from 6mp, and like you said
the treatment even if it's mild can cause complications because of the 6mp- she also needs her wisdom teeth out so while this
is all unfolding the gi lowered the dose of 6mp - so she can have the dysplasia testing and teeth out - but if it's even mild dysplasia it's hard to treat on 6mp.

thanks your answers keep me going
i
Mom to 20 year old daughter diagnosed 11/07.
colazal 3 x3 daily
purinethol 6mp=50mg daily
culturelle probiotic 2 daily
chewable vitamin
xifaxan antibiotic 400mg 2x day soon to be weaned-done
today 2/13/09
yaz birth control pill for cramps started around 2003


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 6827
   Posted 7/23/2009 10:40 AM (GMT -6)   
I can't offer any advice, but I'm sorry your daughter is going through this. Hope that it all works out relatively quickly!
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).


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 4521
   Posted 7/23/2009 1:23 PM (GMT -6)   
Sorry to read that your daughter tested positive for cervical dysplasia at her young age. What does the gyno recommend: repeat testing or further procedures soon? RE GI issues: Let me just tell you that I've never been on 6-MP, but got a dilly of a staph infection while on Cortenemas ca. 1992. I've been on Colazal most of the time since 2003 with good results until my health insurance obliged me to use the generic last yr. (A disaster that gave me very unpleasant headaches + D!) Colazal is balsalazide disodium, which breaks down to mesalamine within the colon-- different delivery than Asacol or Lialda, but still a 5-ASA med. My most recent experience with return to brand-name Colazal leads me to think Salix removed something from the original formula that helped to solidify bms-- but also caused side effects like dry mouth. Alas, none of these meds are ideal & we patients react differently, which is why UC is so hard to treat!!!! Has the gastro suggested an alternative to 6-MP for your daughter? It seems that, if she recommends quitting it, she has to come up with a recommendation for another med to back up the 5-ASA (mesalamine in one or another form). There aren't a whole lot of choices, but hopefully what is available currently will be of help to your daughter. It seems that you need to stay calm (always hard in these circumstances) & get the best possible information on available treatment-- both GI & gynecological.  Also, think about the wisdom teeth extraction in terms of one side at a time rather than all 4 at once, to minimize discomfort/dietary changes.  Best wishes as you sort all this out & keep us posted as to how she's doing. Her many accomplishments of the past yr should carry her thru these new trials-- reasons to stay positive. / Old Hat (30 yrs with left-sided UC ... [etc.])

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 10103
   Posted 7/23/2009 4:09 PM (GMT -6)   
has she had atypical paps in the past? does she have cervical dysplasia or an atypical pap? Don't you need to do a biopsy to get a diagnosis of cervical dysplasia? I have heard that a lot of the time a atypical pap can be due to a minor infection or something much less servere. Sometimes it can be linked to HPV. Have you had the pap DNA probe for HPV?
 
I would get more opinions and have more tests done before I make any conclusions.
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)
Back on Canasa every other night + Asacol (9/day) + Probiotics + Iron
Reducing to 6 Asacol/day + Canasa + Probiotics + Iron - So far so good!!! -SPOKE TOO SOON! Back to 9/day...


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 4521
   Posted 7/23/2009 9:09 PM (GMT -6)   
Rey-- you also mentioned your daughter's lactose intolerance. That shouldn't be a major threat to her colon-- because many lactose-free dairy products are available in the supermarkets now. Low-fat, low-salt yellow cheeses like Emmentaler & Gruyere would likely agree, too, or she could try soy cheese. / Old Hat (30 yrs with left-sided UC ... [etc.])

Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 4521
   Posted 7/25/2009 7:41 PM (GMT -6)   
Notsosicklygirl raises a very interesting point. It reminds me that you commented in a post a while ago that your daughter's UC seemed to crop up after she had the anti-HPV vaccine. Hmmmmm. Are the gyno & gastro connecting the dots? If not, additional consultants may be the better way to proceed in the coming months. Best wishes for you to get to the root problem. / Old Hat (30 yrs with left-sided UC ... [etc.])

rey
Regular Member


Date Joined Nov 2007
Total Posts : 344
   Posted 7/26/2009 7:06 AM (GMT -6)   
Old Hat you have a good memory, it wasn't long after her vaccination for the hpv that her uc began-within a couple of months.
what do you mean by a back up to messalamine, if the colazol is a messalimine?

there will be another test to detemmine if it's precancerous -not atypical cells, but can you tell dyslasia from a pap?-
or not but he did say dyplasia, and that if it wasn't precancerous it (colposcopy will be friday to determine)
could be followed, but i don't know what that would mean for the 6mp-now lowered

as for the wisdom teeth -they all hurt and are crowding her small mouth and she wants them all out at once-is this really bad-we figured
that it's probably best in case she ends up staying on 6mp for now to do it while her dose has been lowered? but we're waiting for the
oral surgeons approval-and she is having it done after her job ends befor going back to school (fingers crossed).

as for the lactosse- iwas just surprised that we weren't told early on since it's a dietary concern-dr is always in a hurry!

Old hat are you getting better back on the brand? i always wonder if it's the colazol or 6mp that's been holding her?
maybe finding out soon.

sorry thisi is so long.
thanks!
Mom to 20 year old daughter diagnosed 11/07.
colazal 3 x3 daily
purinethol 6mp=50mg daily
culturelle probiotic 2 daily
chewable vitamin
xifaxan antibiotic 400mg 2x day soon to be weaned-done
today 2/13/09
yaz birth control pill for cramps started around 2003


rey
Regular Member


Date Joined Nov 2007
Total Posts : 344
   Posted 7/26/2009 7:13 AM (GMT -6)   
oh and she hasn't had an abnormal pap before, only began them last year.

and i did ask the drs about any connection to the vaccination-of course the answer is no.
thanks
Mom to 20 year old daughter diagnosed 11/07.
colazal 3 x3 daily
purinethol 6mp=50mg daily
culturelle probiotic 2 daily
chewable vitamin
xifaxan antibiotic 400mg 2x day soon to be weaned-done
today 2/13/09
yaz birth control pill for cramps started around 2003


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 4521
   Posted 7/26/2009 7:05 PM (GMT -6)   
You're welcome-- it's not a long post considering all the issues you're contending with. By "back-up to mesalamine" I was referring to the immunosuppressant meds, which are drugs like 6-MP, Imuran, Remicade, & Humira. Steroids are also immunosuppressant at high dosage, though. From what you wrote above, the gastro presented a worst case-scenario whereby your daughter would flare after being taken off 6-MP and could not use other immunosuppressants due to her experiences with bacterial infections such as strep & staph-- therefore, she thought colon surgery would likely become necessary. (That's what I arrive at from re-reading your explanations above.) Probably the gastro "freaked out" a bit on hearing the word "dysplasia", even though it's gyno-related in your daughter's case. In recent yrs the topic of dysplasia in colorectal tissue has come up for debate in IBD gastro circles, where there was major disagreement over how to consider & treat it. (There's a Mt. Sinai gastro named Ullmann who views it as a mandate for colon surgery, but other top IBD gastros have disagreed.) Anyway, what all doctors agree on with regard to possible dysplasia of any tissue wherever is that it requires very skilled & experienced pathology for accurate evaluation. That's hopefully what will result from your daughter's colposcopy specimens. You ask in your post how can they tell the difference between dysplasia & "atypical pap" -- it takes a lot of expertise. (Which is why patients sometimes pursue 2nd opinions elsewhere.) My hope is that her colposcopy shows no sign of dysplasia, which is a possibility. I also wonder if a reaction to Yaz or the anti-HPV vaccine could give her atypical pap readings over time-- because I'm generally skeptical about gyno issues, due to the complexity of hormone biochemistry. RE wisdom teeth: at age 20 I had all 4 extracted at once. It gave me trismus on both sides, locking of the muscles that enable one to "open (the mouth) wide"! For 10 days post-surgery I could not really deal with solid food as a result, but had to get by on liquids sipped thru straws. Then I graduated to scrambled egg. It was a crummy experience, and a friend who did one side extraction at a time fared much better than I. FINALLY, RE brand-name Colazal: I had to go back on it because the generic gave me ugly headaches at the base of my skull. But, as I wrote above, I think that Salix recently took something out of it-- so I react to it differently now (to brand-name) than I did 2003-2008. The anti-inflammatory part of it works the same, but it doesn't solidify bms like it did before. (Could be, though, that my body has changed as well-- that's always possible with UC, too.) BEST WISHES! Please keep us posted & take care. / Old Hat (30 yrs with left-sided UC ... [etc.])

Post Edited (Old Hat) : 7/26/2009 6:10:25 PM (GMT-6)


thatfield
Veteran Member


Date Joined Jul 2008
Total Posts : 822
   Posted 7/27/2009 11:41 AM (GMT -6)   
Just something to consider...when I was about 22 I had three abnormal paps a row (had one every three months b/c of abnormal inflammation results) all three came back abnormal showing inflammation...I had a colposcopy (not fun) and my gyn said that she was not seeing anything pre-cancerous but still concerned about getting inflammation in the pap results...she wanted to do a freeze...I got a second opinion...it turned out that there was nothing wrong and no need to a freeze. Then, I was diagnosed with Irisitis in my left eye at 25...was sent through tons of testing to find out that I am ANA positive...was told that my immune system is simply not working correctly and inflammation is a result...I had a suspicion at that time that the inflammation that showed up in the previous pap results was related to the inflammation in my eye however I never had another abnormal pap...then when I was 31 I starting have GI issues...back to the inflammation and immune system reaction...I think all three of these things are related for me...my paps have been normal for almost 12 years now without any medical intervention...I am just writing this because I wonder if your daughter is experiencing something similar and I think that if she has UC that it would not be out of the ordinary for her to have inflammation in other parts of her body as well...especially if she is ANA positive...has she been tested for that? I had to go to a rheumatologist to get the ANA test run...
Dx 2006 right after the birth of my daughter
Lialda 3 pills a day!
Canasa daily
Probiotics Daily
 


Ashley O
Regular Member


Date Joined Jun 2008
Total Posts : 72
   Posted 7/27/2009 1:37 PM (GMT -6)   
Hi Rey,

So sorry to hear about your daughter's troubles. I am your daughter's age and have had UC since 2005. Remicade recently stopped working for me so I was switched to 5-ASA the Lialda 4 pills each morning. My doctor recommended I not only do this oral mesalamine but a rectal mesalamine as well. That is why I do a canasa suppository each night as well.

I used to think that Canasa was a waste of time and never consistently used them. However, since growing resistant to Remicade and only using the Lialda 4 pills once in the morning I decided to use the Canasa suppositories nightly to supplement the Lialda. I didn't think the Lialda would be enough on its own after being on Remicade for 3 years. I have been SOOOO surprised with how good I've been feeling by taking the Lialda the last 33 days and using my Canasa every night. WHAT A DIFFERENCE!! I am not having urgency anymore and no more blood or diarrhea. What a relief after flaring so bad. I even made it to Maui for a week and got back last wednesday. My canasa saved my behind-literally. Coming from a former non-believer, trust me this stuff works. Maybe not by itself, but certainly complements my Lialda nicely.

I think your daughter should exhaust ALL her options before surgery. Why take out a colon that can be saved? I believe that rectal and oral mesalamines together can keep flares away if we are diligent about taking our medication consistently and correctly. However, there are some people who are worse off than others and surgery is certainly necessary part of the time.

Best of luck to you and your daughter,
Ashley O
Female, Age 20, DX w/Proctitis UC October 2005
DX w/Pancolitis June 2009
Currently close to Remission. WHOOOO!

Present Meds: Lialda 4 pills every morning and Canasa Suppositories nightly.

As Needed: Immodium, Clonazepam 1mg for anxiety

Past Meds: 40 mg Prednisone Daily 2005-2006, Miralax, Ginger Supplements, Remicade every 8 weeks Aug 2006-June 2009


Old Hat
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Date Joined Feb 2007
Total Posts : 4521
   Posted 7/31/2009 10:12 PM (GMT -6)   

Old Hat
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Date Joined Feb 2007
Total Posts : 4521
   Posted 8/9/2009 12:39 PM (GMT -6)   
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