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My update from the GI  
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Posted 9/11/2008 5:39 AM (GMT -7)
I seen my GI yesterday for my check up.  Right now, I am in sort of limbo with my Uc symptoms.  I will go from having a few really good days of solid bms, no blood and only once a day to having a bad couple days with D x's 4 a day with a bit of blood.  I have been yo-yo'ing like this for quite a while.  My GI had me do another blood test because he said that I am just below the toxic level for 6mp and wants to keep an eye on it.  My body is barely metabolizing 6mp and the risk of toxicity won't allow me to increase my dose.  So if I have to stop 6mp or lower my dosage, I can guarantee that I will flare because I am barely holding it together right now.  The doc seemed happy that for the most part I have no or very little bleeding and that I have managed to stay off Colocorts for about 2 months.  I asked him when do you say enough is enough and consider surgery.  He felt that I wasn't quite ready for surgery yet and mentioned that he has a few more tricks up his sleeve in which I quickly replied that I will NOT do Remicade.  He sort of wrinkled his nose and asked why????  He also told me that by having surgery that I would be trading one set of problems for another and I already know that but at least I will be free of this frustrating disease.  He seems to be anti-surgery unless there is no other alternative.  And I like his conservative approach however he is not the one that has to deal with the daily frustrations that this disease can make.  So I am going to give it a while to see what happens and if I continue to flare or yo-yo or if the 6mp turns toxic, I plan on going to another doc for a second opinion.  I really hate to do that since I have been with my doc for 14 years.  But I have to look out for my best interest both physical and emotional.

Oh, btw I brought up my abdominal bloating and pain.  He felt that it is female organ related so off I go again to see the GYN.

 @--->--SHERRY--<---@

Moderator for Allergies/Asthma and Co-moderator for UC

~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Allegra~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3rd epidural injection 9/4, Neurontin and Skelaxin

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Posted 9/11/2008 6:05 AM (GMT -7)
Sherry,

I understand that GIs are trained to treat disease medically and surgeons are trained to cut disease out. There can sometimes be conflicts within the specialites as to the appropriate treatment. However, I disagree with your GIs assessemnt of trading one set of problems for another with a surgical choice. Yes, there are compromises but nothing beats having excellent health which is what surgery gives the patient. It makes dealing with compromises easier. I am not trying to persuade you to rush right out and have surgery but you hit the nail on the head when you said that he doesn't have to deal with the daily frustrations. No one that hasn't walked in our shoes can truly know what it's like living with this disease. I doubt any GI knows the sacrifices IBD patients make on a daily basis in the name of the disease.

My GI tried to persuade me against surgery. He told me I would have permanent diarrhea. Not only was he very wrong but I have not been his patient since surgery which speaks volumes!

You will never need to have your GIs permission to seek a surgery consult or to have surgery if you ever decide to choose that route. Ultimately it's up to the surgeon whether or not you will have surgery.

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

Posted 9/11/2008 6:06 AM (GMT -7)

Ultimately it is your body and your choice. I’m sorry to hear about your current situation. I’m going in for tests on Oct 20th to see if I can get on 6MP. In many ways it always seems like we’re running the fine line between a life debilitating disease and drugs that could potential kill us. My thoughts go out to you.

http://asilentocean.blogspot.com/  -> My blog

Diagnosed 7/27/08

Prednisone 40mg/Day- Tapering down currently.

Posted 9/11/2008 7:18 AM (GMT -7)
I think that in the next few months, after my bloodwork in November, I am going to go to my primary and see if she will refer me out to a Colorectal surgeon. It might even be a doctor within my GI's office or even himself - I don't know yet. I have a HMO so almost all the docs of the hospital system I go to is within the same circle. I won't know until I see my primary. I think for me, and I am usually very optimistic, the breaking point in which I couldn't see light at the end of the tunnel was a year ago. Me and the hubby went to one of his coworkers retirement party at his house. Everyone was drinking and having a grand ole time. You know where I was? Hiding behind this guys garage because I didn't want anyone to see me, hunkered down in pain. That was the reality call that woke me up. Knowing that my hopes on 6mp to work well for me and didn't, makes the decision much easier.

 @--->--SHERRY--<---@

Moderator for Allergies/Asthma and Co-moderator for UC

~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Allegra~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3rd epidural injection 9/4, Neurontin and Skelaxin

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Posted 9/11/2008 7:26 AM (GMT -7)
Sherry, how frustrating this is getting for you. Have you consulted a surgeon yet? I think I would suggest looking around for one and maybe going to talk to him/her. I think it would be much better to discuss surgery options way before the need to have the surgery. This way you get an idea if the surgeon is right for you, you get their opinions, and you have established a connection. They will also give you more details as to what surgery will be like from their point of view (what type of surgery, how long in the hospital, types of pain meds, recuperation time, pros and cons, etc).

--Mom of bratcat (17 years old) and nonamejames (19 years old)--

Daughter bratcat was diagnosed with pancolitis October 2006

Flared Fall 2006, Fall 2007, Spring 2008

Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade

7/3/08-Step 1 j-pouch surgery and no more meds

 

Son nonamejames was diagnosed with Crohns in Spring 2008

Asacol, Pentasa, 6-mp

Posted 9/11/2008 7:43 AM (GMT -7)
you know, I cracked up when I read your post, because my GI says EXACTLY the same thing- "We've still got a few more tricks up our sleeves to try!".... huh???? like what? some unapproved drug that my insurance may or may not cover? My GI is pro-surgery, for me at least. He knows I don't want to go that route, if at all possible, hence the magic trick remarks. For you, I highly recommend talking with a surgeon ASAP- I see your posts on the ostomy forum & know you are very interested in the whole thing. Having a good lengthy talk with a surgeon will give you so much clarification. Your GI doesn't need to "approve" of your choice- he has no say in the matter, really. I know for myself, meeting with a colorectal surgeon & the ENT nurses was a huge eye-opener. Yes, I chose not to pursue that route at the moment, but if I do find myself having to go into surgery, I really don't have the qualms or misgivings about it that I once had. I hope things go well for you!
diagnosed with UC '02

meds-

Asacol- 8 tabs/day

Remicade-10mgs/kg- since 4/07

Imuran- 150mgs/day

Culturelle

Fiber supplement

 

 

Posted 9/11/2008 9:29 AM (GMT -7)
I think on the one hand your gastro is being very conservative & cautious about recommending surgery because you have other health issues, but in the meantime he doesn't seem to be addressing your quality-of-life concerns, other than for mentioning RX of higher-order UC drugs that scare you for valid reasons. It could be that he thinks aging will reduce your hormone-caused problems & possibly impact favorably on your intestines, too. If you go to a surgery consult, be sure to discuss all your pain issues/history. That may help to sort out what parts of your suffering are GI-caused & therefore likely to improve with surgery, as opposed to endocrine/gyno/skeletal-associated pain which might or might not improve when you have to care for an ostomy, besides. Ultimately, the surgery decision is yours to make-- so you need to have the best available info. on your "whole" picture. (Sorry to hear that 6-MP is not working optimally for you; for sure this is a big letdown & a frustrating one, too.) / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

Posted 9/11/2008 12:49 PM (GMT -7)

Hi Sherry,

I am soooooooooo sorry to hear you are still having problems.  When was the last time you had an colonoscopy?  I'm sorry but I have been on here off and on.  Mostly off.  Sorry about that.  I think it is always wise to get a 2nd opinion.  Surgery is a tough thing to do so I would weigh all my options.  I hope you feel better.  I feel depressed for you.  Hang in there.

Stacy

Current meds are:

Asacol 6 pills a day

Lexapro 20 mg once a day

Ativan .5 mg when needed

Canasa when needed

Posted 9/11/2008 1:11 PM (GMT -7)
Hi Stacy! :) Long time no "see"! I get a cscope every 2 years so I had one in April '07 and I'm due again this April coming up in '09.

Bennie, no I haven't consulted a surgeon yet. I just made the delcaration for surgery just recently. But I plan on seeing one in near future.

I've already made my decision and have come to peace with it. I have done my research for the past 2 years, I have spoke to another Jpoucher in person and many here on the Ostomies forum. I have tried an immune suppressing medication and I was steroid dependant. So as of now, I'm just in limbo.

 @--->--SHERRY--<---@

Moderator for Allergies/Asthma and Co-moderator for UC

~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Allegra~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3rd epidural injection 9/4, Neurontin and Skelaxin

To help Healingwell - click here: DONATE

Posted 9/11/2008 1:14 PM (GMT -7)
I agree it sounds like a good idea to get a second opinion. I also agree that if it's a surgeon you can expect he or she will recommend surgery!
As I have said before (see the other new thread on gluten) it might be some food sensitivity that causes your different experience on different days. It might be something you would never expect would irritate.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.

Asacol/5ASA maintenance for 20+ years, usually 3 pills 2x day. 

Currently tapering OFF prednisone from lingering flare;

August 2008 sought care of naturopathic doctor. Tested gluten intolerant and started gluten-free, soy-free, etc. diet which resolved flare. Also Replete probiotic, DGL (licorice root, slippery elm), Permeability Factors. Slow-release iron and B-12 shots for severe anemia.

 

Posted 9/11/2008 1:43 PM (GMT -7)
I think it's a good idea to get a second GI opinion and see a CR surgeon.
I saw an additional GI and 3 CR surgeons this summer. One surgeon said Remicade was to get you healthy for surgery, the other said to just consider my quality of life, and the other said it's better to keep your colon as long as you can. My GI said that if Remicade worked, I'd have to stay on it indefinitely. The other GI said to stay on Remi for just a year, and then see if just 5ASAs will keep me in remission; his major concern about jpouch was pouchitis, since 1/3--1/2 get it sometime in their lifetime. So, even though I got differing opinions, it helped me to make a decision.
Female, Age 19

9 Asacol, Rowasa, 1000 mg Canasa, Proctofoam, Rifaximin 2/day

Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (3 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort

Posted 9/12/2008 10:14 AM (GMT -7)
Sherry,
It sounds like the trip to your primary Dr. for a referral to a surgeon is next in line. You have been up and down with your disease and battling it for 15 years. So, I think that you would know when to throw in the towel and go for the goal of surgery. We all know that this is not a decision that is lightly taken. BUT, at the end of the day, it is YOUR decision to make (well, together with insurance). As you told me earlier, you want to get your life back while you are still young enough to enjoy it. You can't spend the rest of your life hiding behind garages in pain. I completely support your thoughts of having surgery. And if it comes to surgery, I'll be one of the first ones in your hospital room to greet you when you are ready.
Debbie

Pancolitis since 2003. Osteopenia. Multi-vitamin, calcium, omeprazole, benefiber, boniva, Lialda, Rowasa enema, enablex, pro-biotics. Former Remicade user.  Michigan, USA.

"The secret to my own happiness, my own good future, is within my own hands, I must not miss that opportunity"

 

Posted 9/12/2008 11:39 AM (GMT -7)
I wouldn't hand about, i'd be looking for a second opinion now.I didn't realise how toxic that stuff was.Hopefully things will settle down soon, but never hesitate when it comes to your health.
Marty
                                     keep the faith 

         asacol/proctifoam/Zoton (lansoprazole)/pred/colofac


       

                   http://www.myspace.com/martylogue

Posted 9/12/2008 12:06 PM (GMT -7)
Sherry, I too am sorry for your frustrations. You have been fighting this disease for such a long time. Doctors are wonderful, but you are right they aren't living in our shoes. And as much as I hate to say it a big part of the medical world is sales, sales, sales. Many of us are furtunate enough to have insurance others don't. However, even w/ insurance the costs of meds are outrageous. I am new w/ this disease as most of you know not anywhere near ready to make a decision for surgery and wouldn't be until we've exhausted the other options. But for as long as you have fought this disease, I certainly wouldn't blame you.

I hope you feel better, sweetie!

Gigi1227
Diagnosised 8/25/08 GRRR

Currently Flaring GRRR

 

Canasa

Asacol

Multi Enzyme

Mega Probiotic

Psyllium

Fiber Wafer

Nictotine Patch

 

Posted 9/13/2008 11:42 AM (GMT -7)
Sherry.....all the stuff you have going on.....truly, I'd do the hysterectomy firstly. I personally think that the reproductive organ/colon connection for some women is extremely strong. Those of us with wonky innards have to sometimes make the choices for us to get rid of them. Which one goes first?

Some doctors will be conservative, but at what price. I'd be devastated to go through the process of learning to live without my colon, but I do know there would be lots of support for me (which is a huge comfort). But I'm not even near there regarding meds not working for me....so unless a c-scope showed cancer, I'm hoping my liver and colon stay with me for a while.

Go through the check-list of what is causing you the most grief. My opinion is obvious.

H xx

*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night

~diagnosed January 1989 UC (proctosigmoiditis)

~Bentylol (dicyclomine) 20mg as needed

~vitamins/minerals/supplements 

~Probiotic 4(Natural Factors Protec) bedtime + Primadophilus Reuteri Pearls occasionally

~multi-digestive enzymes as needed

~Ranitidine,Pariet (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma)

~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)

My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

 

Posted 9/13/2008 1:26 PM (GMT -7)
I know there are problems once the colon is removed but I am curious as to what your Dr. Says the problems are that you would be adopting????
What was your answer to your Dr. about WHY you won't use Remicade?
My dr. never even offered it to me.
Presently on no pharmacuetical drugs.
using Breaking the Vicious Cycle
Diet



http://en.wikipedia.org/wiki/Fecal_bacteriotherapy

http://curezone.com/forums/am.asp?i=57263&s=3
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