anyone doing it without medication? can we say No?

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uklass
Regular Member


Date Joined May 2009
Total Posts : 65
   Posted 5/7/2009 1:07 PM (GMT -7)   
Hi everyone
 
I'm glad I've found this site and have been interested in reading everyone's comments - I wonder if anyone can help me with my situation as I'm feeling pretty low and overwhelmed?
 
I was first diagnosed with Crohn's following an emergency 'appendix' operation 12 years ago (right hemicolectomy). I remember being on tablets for a while and having a few follow up visits to the consultant but since then, although admitted twice for obstruction due to scarring (no surgery), I have have not been on any treatment whatsoever. I assumed, probably naively, that I didn't have Crohn's and that any symptoms I have had over the years are as a result of 'plumbing' problems. I have never had the classic blood/mucus, weight loss etc just periodic bouts of diarrhea and pain, and have self-managed throughout. Anyway, I have recently had major surgery - an obstruction got serious and when they did a CT scan showed strictures, abcesses and 'a bloody mess' as my surgeon told me later (resection). I thought I'd got IBS because my symptoms for ages were stomach cramps/spasms - work has been an unhappy experience for months and symptoms were worse at certain times so I ignored it. 
 
In my head, and the way my body feels and acts now, I think the Crohn's has gone away again and I need to get used to all the changes that have resulted from the operation. The gastro specialist wants me to go on Azathioprine long term to reduce the risk of relapse (not to deal with active symptoms now) - a leaflet he gave me and lots of internet research doesn't make it sound a good thing with all the potential side effects. I like travelling abroad, whether a simple beach holiday or a camping safari in Africa and I love the outdoors generally. I work with people and am around children a lot.
 
Wouldn't it be better to self-manage but seek earlier help if symptoms start up? I don't know whether I can even say no to treatment.  Anyone else had a similar experience? Is it really a good idea to start down a path of a cocktail of drugs if I don't have active disease?
 
any help/advice/comments welcome!
 
 
 

MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 5/7/2009 2:34 PM (GMT -7)   
Well not medicating and "self managing" for some time led you to the position of having, as you report, obstruction, abscesses and "a bloody mess." So I suppose you could follow thta path again. The truth is that even absent symptoms of active disease, Crohns is almost always working away in there, especially with no maintenance meds -- sort of like termites. Then the house falls down and you say, gee, shoulda treated for termites! If you have stricturing and fistulizing Crohns disease that led to the complications you report, you will have stricturing and fistulizing Crohns disease that will lead to similar (or worse) complications in the future, unless you address it with long term (permanent) medications appropriate to your case that will halt or at least minimize the inflammatory damage. Sorry to be so blunt, but I have seen countless posts on this forum that say "went it alone without meds . . . and now I have an ostomy and about three feet of gut left."

Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 5/7/2009 3:36 PM (GMT -7)   
I agree with Mike: The earlier Crohn's patients are put on maintenance medications once diagnosed, the better. 
 
There was a guy on here a while back who told his story.  When he was first diagnosed, his doctor wanted to put him on Asacol (maintenance drug) but he refused to take it. Instead he opted to "cure" himself by going on a no preservative/organic-type diet.  He started feeling a lot better so he was certain it was his new way of eating that had caused him to feel so good.  Unfortunately less than a year after his diagnosis, he had to have surgery to remove part of his intestines. The doctor told him had he just taken the maintenance drug to begin with, that would have at least helped keep the inflammation down and he could have probably warded off surgery for several years...maybe never having had to have surgery at all.
 
I just recently had my gall bladder removed and my surgeon, knowing I had Crohn's, took some time to look at the outside of my small & large intestines.  He said they looked great compared to other Crohn's patients he'd done surgery on and that whatever I was taking/doing was working for me.  I've been on Colazal (maintenance drug) since the day I was diagnosed.  I was in remission for 4 years but I have also had flares.  However, I truly believe had I NOT been put on that medication to keep the inflammation down as best as possible, that things probably would have gotten MUCH worse for me by now. I'm not under any dillusion that Colazal will ALWAYS work for me...it might not.  But I'm not taking the chance of NOT taking it for now because it has been working for me.  
 
Can you say no to a drug?  Of course.  It's your right not to take a drug.  Your doctor could fire you from being his patient, of course, for not following his recommendations (I know a Crohn's patient who that happened to but it was warranted - she wasn't showing up for scheduled Remicade treatments) but if you feel your doctor's recommendations aren't right for you, then say no.  Maybe even get a second opinion.
 
Stay on a maintenance drug at the very least.  Even if you can't FEEL the inflammation and THINK your illness isn't currently active, with Crohn's Disease it is ALWAYS there, lurking around the bend in your intestines.  Keep it at bay with the drugs that have been made to help with inflammation.
 
Best of luck to you!  
Diagnosed in October, 2004 at age 32 (misdiagnosed with IBS in 2002)
37/F/SC
Current Rx's: Colazal (generic), Omeprazole, Ferrous Sulfate, Librax, One-A-Day multivitamin, Probiotic, Omega-3 Fish Oil, Vitamin D, Cranberry pills
Secondary conditions: swelling ankles, extreme fatigue, mouth ulcers, joint pain
Previous/occasional Rx's: Prednisone, Flagyl, Levaquin, Xifaxan, Carafate
4/7/09: Gall bladder removal laproscopic surgery (gall stones)


Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 5/7/2009 3:39 PM (GMT -7)   
I too had a resection and three years later am dealing with the same issues. I would stay on a maintenance drug. Maybe try Asacol or Pentasa, their side effects are very minimal. Why build up more scar tissue and have obstructions when they could be avoided. With your busy life, I would think you would want to stay symtom free as long as possible. I wish you the best of luck.
Dx'd with Crohns 1984 and polycystic kidney diease in 1996
I was in remission for 16 years, Bowel Resection surgery 2006, Now on Asacol, folic acid, and Enalapril, Have been flaring on and off since August.
 
I love my life and everyday I pray that my body cooporates and allows me to do what I have planned.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 5/7/2009 7:56 PM (GMT -7)   
There is the odd patient like myself though...I've had CD for 18 yrs now and it's never been in full remission (I had/have complications with perianal crohn's skin tags in the beginning of getting sick which was misDX) but I'm either allergic or non-responsive to traditional oral RX used for CD so the only thing I was ever on for the first 13is yrs of my disease was prednisone here and there (not very often actually) and yet to this day I have not had to have any surgeries of any kind for resections or anything. I've always been mostly severe (my CD has mainly affected my colon the entire 18 yrs and anus with the flaring tags) often having to rely on rectal meds cuz my CD being mainly in the colon (crohn's colitis) would often affect my rectom as well. about 5 yrs ago I started with natural supplements which have been helpful but still no full remission, my GI also suspected 5ish yrs ago the I had also developed IBS (cuz of flaring continuously for so many yrs) I had also ecame lactose intolerant but the probiotics I've been taking the last 4ish yrs now have really put that into total control.

So there are some of us that can still have moderate symptoms and not have surgery around the corner even though we're not taking traditional oral meds for our disease...I might also just be a freak of nature LOL.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


aoccc
Regular Member


Date Joined Feb 2005
Total Posts : 455
   Posted 5/7/2009 9:21 PM (GMT -7)   
so many different levels of the disease and treatments out there, these kind of questions are almost impossible.
SCD since 01, remission since 01, occasional random junk food breaks :)
No meds ever.


Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 5/8/2009 4:19 AM (GMT -7)   
aoccc's right.

When I was first diagnosed, my GI told me I may never have another spell/flare/symptom of Crohn's again. He said some of his patients are sick every day. Some go into remission and out of remission then back into remission. Some have one flare and have never experienced any symptoms again. So many unknowns...so many different lifestyles...so many different levels of the disease. It's impossible to know what's the right thing to do medication and food-wise, what will work and what will not.
Diagnosed in October, 2004 at age 32 (misdiagnosed with IBS in 2002)
37/F/SC
Current Rx's: Colazal (generic), Omeprazole, Ferrous Sulfate, Librax, One-A-Day multivitamin, Probiotic, Omega-3 Fish Oil, Vitamin D, Cranberry pills
Secondary conditions: swelling ankles, extreme fatigue, mouth ulcers, joint pain
Previous/occasional Rx's: Prednisone, Flagyl, Levaquin, Xifaxan, Carafate
4/7/09: Gall bladder removal laproscopic surgery (gall stones)


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 5/8/2009 4:47 AM (GMT -7)   
Welcome to Healing Well and hope you can find some info as I have it helps sometimes in making decisions. We all feel overwhelmed that's for sure. I am not on any meds right now but if I need them I will have to consider them.. I am feeling better after my resection ..I do know people who have done good on the med your Dr. is talking about Imuran however I got a rash and not able to take it.. Hope this helps some ..let us know what you decide
.lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail
"Blessed are those that can give without remembering and recieve without forgetting ~Aurthor Unknown~


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/8/2009 7:22 AM (GMT -7)   
I personally agree 100% with MikeB. I once enjoyed a 20 year remission med free, ate whatever I wanted. It ended with a very painful emergency resection, with another one following 3 years later. I learned my lesson and will always take some type of maintainence medication from now on. I only take Asacol now to maintain my Crohns and its working well for me. Many folks have had great success and very long remissions with Imuran and 6mp. I wouldn't worry so much about side effects, many have stated that they do not get colds or other illnesses more frequently on this med and in fact feel healthier than they have in years. I personally don't believe a diet is enough to control the inflammation. In fact, I have recently seen a few of these folks who propose these diets coming up with tests showing they actually have alot of inflammation going on. Good luck with your decision!
Gail*Nanners* Co-Moderator for 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, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

uklass
Regular Member


Date Joined May 2009
Total Posts : 65
   Posted 5/8/2009 9:20 AM (GMT -7)   
thanks everyone for your replies - really appreciate it. I live by myself and although have got great friends, it's hard for them to understand how this affects me. I'm really struggling with the whole 'there aren't any answers as to what causes or triggers CD and everyone is different' - I like to be in control and this has really knocked me sideways. I thought it would just be the recovery after surgery that would slow me down and delay me from going on a trip across Africa or even to be able to go camping this season.

I suppose I'm scared that I will get the side effects from the Imuran that would stop me doing the things I love most - being in the sun, travelling abroad and mixing with people from different backgrounds, and I won't know any of this until trial and error, or might end up with a cocktail of drugs that so many other people seem to be on for a long time. I'm probably being overanxious and obsessive at the moment - it's 7 weeks after the operation and I've lots of time on my hands as I'm not fit enough yet to work or do my normal stuff so I'll probably have to make a decision when my heads in a better state.

Penny xx

justarose4him
Veteran Member


Date Joined Feb 2004
Total Posts : 730
   Posted 5/10/2009 7:18 AM (GMT -7)   
I hear what yall are saying but ...how many can say they have been on meds for ever and have had resections, ER visits , constant pain , weight loss ...ect. ?

Really - isn't it going to happen anyway ? I know for me it did ... I havent been on meds now for about 6 months and feel better then when I was on them ...not to say that things aren't stirring up - but I want the "right" med because the ones I was on only made me feel worse ...

I went off because I had lost insurance ...

about a year ago I had extremely high lipase levels ... and still do ...now my GI says my gallbladder has to come out because he is pretty sure its because of stones ....

so much to contend with

Mean while ...Happy Mothers Day to the Ladies : )
Crohns colitis for 25 years ; one resection ; a few hospitalizations; RLS ; major back issues ; and now...swelling in feet ankles that will not quit ....lots of pain ; terrible to the touch !

Using what ever HBP meds I have left ; a few pain meds left ; a few requip left ...then what ? Don't know since my new employer LIED about medical coverage which has me really left wondering what is going to happen apart from waiting for my miracle ...


snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 5/10/2009 8:52 AM (GMT -7)   
yeah The thing that I find truly striking about other patients histories here on the forum is the boom and bust cylical nature of the disease. It seems to me particularly pronounced, because most people seem to get worse over time, despite the expensive, dangerous, modern drugs regimes they are on. ( nono I'm not saying that this impression is always correct - but that is the overall impression I get, because most cases seem to be like that.)
By comparison, my health has seemed to be much more of a gentle slide, with very, very occasional speedups of more acute bouts of symptoms. I have had no surgery, other than for appendicitis which almost certainly was Crohn's related. The only time I was ever really ill, I was on Asacol, methotrexate (I think), steroids, and eventually only Cortifoam seemed to do any good - all the others actively made me more ill. This was a straightforward cause and effect relationship; take drug, score higher on all measures of illness activity. Stop drug, reduce score on all indicators. It is not rocket science. As I was messing about with dosages for over a year, I had plenty of time to notice all the variables, and see what was making the difference. Like I say, eventually I got steroid enemas, and like magic the problems disappeared.
I have been without medications for at least ten years now, if you do not count antidepressants like Prozac. I do, because although Prozac did not eliminate my stomach pains, it certainly toned them down; like the probiotics I currently take, it didn't cure by any means, it merely turned down the boiling pan to a gentle simmer.
I definitely have periods of enhanced inflammatory activity, and I manage these by being very careful to not eat the foods that trigger or enhance inflammation, trying to keep my electrolyte balance good and vitamin intake high, and taking probiotics. The illness doesn't ever go away, but it subsides, and I am left with what seems to be better health in between the bouts of ill health, than most Crohnies here have. My worst day for trips to the toilet for example is as good as many people ever seem to get - anything over half a dozen trips, I count pretty ill. Of course, many folk here have the energy to hold down jobs - I do not, I can only marvel at their tenacity and guts ! (Pardon the pun... smilewinkgrin)
And whenever the docs shove a camera up where the sun doesn't shine, they tell me they see no inflammation, even when I can feel it, and am passing blood. They ignore problems with my kidneys, aching joints, skin problems, eye problems, possible all bladder problems etc, when I report them - extraintestinal symptoms are not their field, so these go unremarked and untreated.
So, I do with "no drugs", using basically diet and graduated exercise - am mildly ill all the time - get more severely ill sometimes for no obvious reason that I can ever see - and I am never properly fully healthy.
I am inclined to think that this is pretty much the natural course of this illness, and frankly I would expect progressive damage; judging by my levels of fatigue until recently, anyway.
The question in my mind is not, does going without drugs make you more ill ? There seems to be nothing that stops you from being severely ill if the bug or whatever decides to give you a bad time, and nothing that stops progressive damage by the disease. The question in my mind is, how often do the intensive treatment programmes end with all the drastical surgical procedures that have been mentioned here, as opposed to the no drug regime programmes ?
I'd guess it is neck and neck, simply because the biggest factor in disease progression is what strain of MAP or whatever causative factor you have. I think I am lucky to have a mild strain that manifests itself with mainly extraintestinal signs, and others more usually have an aggressively virulent strain that works more on the guts.
I wouldn't ever rule out taking medications, I know they have worked for me in the past ( a very few) - but until the scientific studies manage to get a handle on why different people react differently, all the studies that lump all Crohnies together when judging outcomes are really worthless. The only science I am interested in is how do people with a disease pattern like mine perform under different circumstances, and so far no-one seems to be asking that.
eyes All clear as mud, innit ! wink

Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 5/10/2009 8:56 AM (GMT -7)   
As usual you got a lot of good advice and experienced comments. I went off all my meds and decided to try herb (which in away are meds too) but they have worked for me in amazing ways. I still am sick but not like when I was trying all the different meds which gave me hives, headaches and a number of other miserable side effects. I was allergic to everything. It is rather hard to go traveling until you have some cocktail that works and you can count on it. Be careful and study it out for yourself because yeah it is all varied for each one of us. I so feel for you and your emotional roller coaster ride right now. It settles dow, but it takes time and we all get our personal tailored trials, Huh? Wishing you strength and understanding in the struggles.

Curly9878
Regular Member


Date Joined Apr 2007
Total Posts : 165
   Posted 5/10/2009 2:19 PM (GMT -7)   
I quit meds in December.... Unfortunatly I am going to need a resection within the next couple of weeks.
HOWEVER....... I still do not regret going off that awful medicine.... I feel the same when I am on them vs. when I am off them... BAD. So why put all that stuff in your body? I am sure the meds work for a lot of people and I am sure there is something out there for me... But in the meantime.... I am med free!
28 Yrs
Michigan
Newly diagnosed with Crohns


crohn's pt mom
Regular Member


Date Joined Nov 2008
Total Posts : 86
   Posted 5/10/2009 5:59 PM (GMT -7)   
my daughter was diag almost 2 years ago when she had appendicitis and a resection.  She was prescribed Lialda, but was in denial because she had no more symptoms.  then last summer she started with this perianal abscess and it's just getting worse.  Last summer she started back on her lialda  -  which she doesn't seem to have any side effects from.

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4095
   Posted 5/11/2009 12:58 PM (GMT -7)   
I take Pentasa, but the research seems to indicate that Pentasa works no better than a placebo in the treatment of Crohn's. The 5ASA's ( Pentasa, Asacol, etc) show statistically significant positive results with Ulcerative Colitis, but not Crohn's. So I often sit and worry that a) my disease is progressing despite the Pentasa, b) I'm spending a lot of money on Pentasa for no good reason. I have no good answers...I'm just throwing it out there that saying that remaining on maintenance drugs of the 5 ASA meds will prevent progression of the disease may not be true at all. Furthermore Nanners...good for you that you went 20 years in remission...quit blaming yourself that it came back because of lack of maintenence drugs....it may have come back anyway!!!!
50 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 4 500mg pills per day, Metamucil and colace for constipation


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/12/2009 6:09 AM (GMT -7)   
Gumby I respectfully disagree with you on the end of my remission. In that 20 years I believe I could of taking MUCH better care of myself. I tried to ignore a disease you cannot ignore. I was young and naive and will never be so dumb again. I never educated myself about Crohns and because of that, I ended up with a very painful and traumatic emergency resection. I now try to help the newly diagnosed not make the same mistakes I did. Even while people are feeling good, the disease is in there continually doing its damage. So as I always say, I will always be a big proponent of taking maintainence meds.

These resections changed my life in alot of ways, some of them very unpleasant. So if I can help just one person not go down the same road I did, then I feel I have been successful. JMHO
Gail*Nanners* Co-Moderator for 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, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

uklass
Regular Member


Date Joined May 2009
Total Posts : 65
   Posted 5/12/2009 8:54 AM (GMT -7)   

thanks again for your replies -I'm trying to step back a little from this but it's all still confusing and overwhelming, especially for a control freak like me so I'm allowing myself to be upset without feeling bad about it.

I get your messages loud and clear about remission meds and I'm certainly not dismissing the possibility. I just need more info about why this particular drug (Imuran) for me, and I have been scared about not even having the possibility of refusal without a black mark against my record (which would screw any insurances i have).

Nanners (and others) - I don't want to sound stupid but can someone please tell me how I would know if I was in remission or having a 'flare'? Any problems I've had over the years with diarrhea or pain or even hospital admissions I've put down to 'plumbing' after original resection.  I want to be able to say that right now 'I'm in remission' and know exactly what that means to me - as a baseline for future symptoms or for side effects of drugs.

Penny x


kel
Regular Member


Date Joined Feb 2003
Total Posts : 60
   Posted 5/15/2009 7:17 PM (GMT -7)   
Hi all, i'm from the UK too and i have never taken any form of maintainance meds since my re-section around 9 years ago becase i have never been offered anything other than pred which i was on for several years until my doctor noticed and insisted i come off them! I have ups and downs but never go to see anyone unless i feel really ill because i think over here the treatment is just crap, or at least mine has been.
Kelly x

crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 5/16/2009 11:06 AM (GMT 0)   
H i never took any meds after my resection 15 yrs ago and got away with it until sept last year. After the op once i had recovered i just got on with my life ate and drank what i want if i fell ill with tummy upset i would just think it was a bug never crohns.Maybe i was just lucky i don't know but it was great while it lasted. Bev x

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/16/2009 8:07 AM (GMT -7)   
UKlass I am in remission right now. My gut is pretty much calm, although I will have a bad day sometimes when I eat something I shouldn't have or have too much stress. I still have really bad joint pains, but the gut is pretty calm. That is MY remission. Its nice for me as I don't have the 5 million bathroom visits and not much pain. But my joints, OUCH!! But my pain meds help with that. Hope that helps.

Can you take any of the 5ASA meds? I take Asacol and it works great to keep things quiet for me. Maybe one of these lighter meds would be good for you instead of the Imuran. Just a thought!
Gail*Nanners* Co-Moderator for 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, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1184
   Posted 5/17/2009 2:29 AM (GMT -7)   

If anyone in the UK is having problems being treated ask your GP to refer you to St Marks Hospital in Harrow which is NHS recognise and FREE. They are Europe's best hospital and specialist centre for Bowel Disorders. They guarantee appointments for anyone with IBD too. They know all about all the drugs and the treat is first class and world renouned.

If anyone wants to go the Homeopathic route then ask your GP to refer you to the Royal London Homeopathic Hospital which is NHS recognised and FREE.

We are very lucky in the UK to have both these hospitals and the medication for FREE.


Diagnosis Oct 07: Mild Crohn's Colitis. Also suffer from bleeding Peptic Ulcers. By the grace of God currently in remission. Current Medication: 1000mg Pentasa Tablets x 2 a day. VSL#3. Asacol Suppository at night.


poohbagCD
New Member


Date Joined May 2009
Total Posts : 4
   Posted 5/17/2009 3:04 AM (GMT -7)   
hey there.i am allergic to sulfha drugs so it doesnt leave alot of meds for my cr.I currently am not taking any meds for my crohns control other then pain meds,my cr is active but my body is trying to hold it's own for now,I dont fit the criteria for remicade or hermiu right now u have to be one high doses steroids for long term.I only come on predistone when bad obstrution is happening.I currentley have a colostomy bag for 14 years now i am hoping to have it reversed one day'''soon i hope.I had 4 resections now and 2 fistula repairs and 2 ostemy ops'So i say yes if you can go without meds go for it!!!

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 5/17/2009 4:15 AM (GMT -7)   
I too am allergic to sulfa drugs. i found that out within days of being diagnosed almost 21 years ago, but I have still been on a maintenance medication or two or three, for my entire time. There are lots of options. I'm not on ANY of the biologics. Currently I take 6MP, Xifaxan and a very small dose of prednisone, but I have been on Pentasa. I may end up on a biologic eventually, but my doctors are holding off on it until it is really needed. I went 10 years undiagnosed and untreated, the damage was extensive. Like Nanners, I will never be that foolish again.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/17/2009 7:09 AM (GMT -7)   
I am allergic to sulfa myself, but am able to take the 5ASA's no problem. I don't think the Asacol has sulfa in it.
Gail*Nanners* Co-Moderator for 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, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*
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