Anyone just manage their illness w/out meds?

I am reluctant to be on meds for the rest of my life. I have a mild case of proctitis (as been diagosed so far), but I cant imagine how bad it would be for someone with really bad uc. I have tried to manage the illness with diet and as little meds as possible. Anyone else taken this route?

gen

read the post remission with diet by blueclassring :). I just read you have proctitis. Its hard to heal some people think they are lucky because they have proctitis and not UC but really you can get alot of bleeding and it can spread to UC any way. I know I have proctitis too, and its really hard to get it out of the rectum even with the diets. I wish i knew about Gerald before It would have been an esier ride for me. but still I will continue.

I have tried to minimize my dosage of asacol but I think that the risk of taking the medicine is outweighed by the risk of more frequent and possibly more severe flares...and increased risk of cancer. I wish there were more really long term studies(5, 10 or more years) that proved that but there are not. You will read of people claiming success after months or even a year doing this or that but unpredictability is what UC is about. I most likely had 3 mild flares starting over 25 years ago, received no treatment, did not change my diet, and never saw a doctor. At least 5 years between each event. I ate venison,ruffed grouse and drank bud light. LOL

Well, as far as playing a dangerous game, as Silent Lucidity put it, Im still in the learning stages of this illness and I actually have never read that it can spread, Ive actually read the opposite. Ive read that usually your first flare up is the worst and that its possible to not get such a severe flare up ever. Also, Ive had the most useless dr's on the planet up till now. I lived in an area in england where the nhs was just so over stretched that they couldnt help anyone properly. I went to the gp for a YEAR with bleeding from the rectum and they thought I had hemmoroids, without ever having a look, mind you. Finally when I had constant bleeding for over a month straight I went to A&E and that was when it was suggested that I had IBD. That was in January of 05 (Im sure it was 05), it wasnt until july that I had my sigmoidoscopy. I was told that I did have proc***. A nurse took me into a small room, said 'you have proctitis'... and just stared at me. I was like 'And??' 'Well, thats it, go home'. NO support whatsoever. They didnt even tell me I had to contact my gp.

Anyway. It went on like this for five years. No information, no support whatsoever. We moved to a different part of the country and I had a few flare ups that I managed without using meds too much. I was given my first perscription for prednisolone early may, I hated it! The side effects were unbearable. I weaned myself off those and Im flaring a bit. Anyway, Ive been to the local gastroenterology dept and there is hope that Ill recieve proper treatment and info. Its been a nightmare 5 years with this.

Anyway, that was a bit of a rant. It only just dawned on me with this last flare up, which was as bad as my first, that it could get worse. Im feeling a little emotional about it at the moment. It kind of took me this long to actually accept I was ill. To accept I had to change my lifestyle, diet, that this kind of had a controlling, limiting effect on my life. Its not just the food I cant eat. I cant work outside the home. I have to have a nap most days. When Im flaring up I am so tired and its the kind of tired where I have a sleep and wake up STILL SO TIRED, I struggle to get up, lol. My gastro suggested it may be necessary to have surgery, we'll see how it goes. Its not so bad up to now, but, yeah, Im realising it could get worse.

What I need is info. I need to be treated properly, consultations need to be good ones, where they dont lose my paperwork (did I mention that, they lost my paperwork after my sigmoidoscopy?). I need to know what meds are avaliable to me, how bad my ibd is at this stage, and basically how to manage it. When I hear about surgery, it sort of depresses me...

Anyway, thanks for letting me vent. Ill be back, Im sure.

Ive read that usually your first flare up is the worst and that its possible to not get such a severe flare up ever

Don't take that for granted for either IBD: UC or Crohn's. That may hold true for some, but it does not hold true for everybody or even the majority. UC/Crohn's are chronic diseases which can and do - especially without treatment - progress. It's not inevitable that they will progress; even without meds your proctitis could remain as proctitis for the rest of your life. But not taking meds long-term is a risky business. I started off with mild Crohn's, hardly took anything for it for 10 years, and during that time it spread and got much worse. And now it's just really hard to treat at all.

Appalled by your experiences with the NHS though. I've got gripes with them, but compared to yours they're minor. I got a quick diagnosis if nothing else, but like you was left in the lurch afterwards. I don't really know what else to say, except I hope things get better for you.

I started out with a very mild UC case of lower left sided UC and now have pancolitis. So, for me the first flare was neither the worst nor the only. I got by on rectal meds alone for a year and half and then bamo, crazy whole colon action. Starting Remicade as soon as my paperwork is in order.

Many people control their UC w/o meds if it responds to diet modification or alternative treatments such as probiotics, herbs, fecal transplant, helminths. If the immune system isn't attacking and you can do natural things to keep it from attacking that's great. I do think you should see a doctor regularly, though, and have regular colonoscopies to make sure you colon is in OK shape using the alternative treatments you choose. I have heard stories of people who felt ok and didn't see a doctor for years only to find they had low level inflammation that was causing damage.

Well, is there any way of knowing if the illness would have spread anyway? Ill go and start a new thread!

gen

This is all very interesting. I am not on any meds at the moment. Im flaring a bit. Honestly the treatment I recieved where I lived previously made me believe that this wasnt all that serious. I had no idea any of what you are saying was a possibility. The gp's never gave me any indication that this could get worse. Its only since I moved and am with a different health authority that Im finally getting any kind of support. Anyway, thanks again, you have been very helpful.

gen

I began with somewhat mild proctitis and developed to severe pancolitis within 8 months.  Things can change quickly.  I was desperate to try to fix it with diet, because none of the medications I was using were helping.  On this website there are many posts about the spinach and sunflower diet.  I tried it as a last resort and went from taking 13 pills a day to none.  It took a few months to get off all the meds, but I now manage my severe pancolitis with diet alone.

Many people on this site have tried it with mixed results, but it totally saved me from having to try some really unpleasant options.  I absolutely suggest that you give a try while taking your meds.  Just make sure you read up on it - there's a lot of info/tips on this site.

Good luck.

(Well, as far as playing a dangerous game, as Silent Lucidity put it, Im still in the learning stages of this illness and I actually have never read that it can spread, Ive actually read the opposite. Ive read that usually your first flare up is the worst and that its possible to not get such a severe flare up ever.)

Trust me been there done it-it is a dangerous game. My first flare was mild-procotitis. At one point my GI even took me off meds and one year later guess what-came back with a vengance.

So bad I lost half my blood and had to have emergency surgery. Well now 10 years later and new GI ( one of the best in the country no less, and I should have known better), now with j-pouch and pouchitis, was doing great also took me off meds and quess what-flared up so bad that I am off to the city to discuss possible pouch removal with surgeon. Do not let this disease fool you-it has a awful mind of it's own.

Susan

 

Bottom line here,is that nobody is trying to scare or upset you,but you have the benefit of many peoples experience here.The thing with UC,is you don't notice the med benefits until you really need them,and that can become a long job getting back into remission.Much better to stay in remission and continue life in blissful ignorance that you even have a condition!
As for crazy meds,which meds are scaring you?At the moment(and hopefully for good)you "only"(as I'm not belittling your condition)need the 5-ASA's,topical and oral.The vast majority of people have no issues with these what-so-ever,and it's not much different than taking Aspirin each day to keep the heart healthy.In fact,ASA's(Amino-Salicylates)are actually very similar in chemical composition to Aspirin!

I was on asacol and colofoamin the beginning, when I was first diagnosed, . Now, I took those until I felt well. Im not exagerating the fact that I have recieved absolutely no help at all, no information on how to manage my disease. No education, everything Ive learned about it is from my own research online as well as from books and such. The gp's and gastro's I had up to now, in manchester uk, were NO help, in my case anyway.

Now, I had this most recent flare up, (I had a few previously which I managed on my own) which was particularly nasty. I went to a new gp (I had given up on them helping me or taking me seriously, as they had never inspired confidence) this last time and I just cried bc she actually listened to me, asked me questions. She gave me prednisolone and referred me to the local gastro department. I had my appointment last monday. Ive been referred to have a colonoscopy, where previously I had only a sigmoidoscopy and some x-rays. This was even after an emergency hospital stay about 2 years after being diagnosed.

Asacol wasnt so bad, it was fine, so was the colofoam, the problem was that I was still suffering other symptoms apart from the bleeding (which the colofoam and asacol had cleared up). I was on those for months, the rectal bleeding was under control, but I was still suffering bloating, crazy cramping and such, feeling tired etc. So, with no support, I thought the asacol and colofoam was either not working completely or there was something else going on. Which I did tell my gastro dr's (I had never seen the same one), they did some x-rays, and the guy who didnt even see me, told me thru a trainee consultant that I must just have ibs as well. I kind of gave up on them at this point.

The prednisolone... I was given them for the first time early may this year. A low dose (20mg a day), but the side effects were pretty bad, maybe Im a wimp. I had pain in my legs, arms, neck, shoulders, hips etc. Also, I had night sweats, dont even know if thats normal, could tolerate that. I had some pretty nasty mood swings, however, emotional issues, and my period came early. Now, I could possibly manage that, however, I had been on antidepressants for two years about 18 months ago. It took me about a year to get back to normal after coming off those and I just cant handle the emotional side effects at the moment. I just spoke to a gp on the phone who's prescribed me predfoam. I told him all of this and he is happy to try that for the time being. Im still waiting for a colonscopy and I dont know how long it will take to get that done. But, for the first time in about 6 years Im hopeful that Im going to get the support and help, medication I need. Ive learned more from you guys here in the few days Ive been here then I did in the five years in the nhs service in manchester. Thank God we moved half way across the country. I just want to cry with relief!

So... its not just the meds Ive not been happy with taking. I dont trust the drs to understand whats going on in my body to know how to medicate me! When I was with this last gp she was looking thru my notes and she said 'They did say you could come back for advice or ring, its here in your notes, they didnt leave you in the lurch completley.' But they did. That almost made me run away! But she said enough and did enough to get the ball rolling again. I honestly didnt know this could be so bad. I did not know it could spread. Im hoping it hasnt in the five years since my last sigmoidoscopy. The other thing is that if I dont understand what is actually supposed to happen with a certain med, if I dont know how long I should be taking it, how its supposed to help and I stop bc I think Im getting better or bc the side effects are a) too much to handle, or b) sometimes mimicking the illness itself, I cant always tell if they are helping... Part of the problem there is that the dr's, gps, gastro's werent asking me the right questions... until this new one. *I* didnt know what I was supposed to be looking for! The gastroenterologist... really should, kind of atleast, shouldnt they?!

Ive just been as frustrated with the treatment, meds Ive recieved, as I have been with the illness itself. Maybe Im a rare case, I hope I am. I hope other people get the proper treatment! Maybe I wasnt a bad enough case to deal with, they had other pressing cases to deal with, thats the impression I was given.

Thank you guys for really helping me out. For responding, I cant tell you how helpful you've been! Im being treated like a new case but Ive had this for over five years now. I know the ropes, I know now by trial and error what to expect from my disease. It only hit me with this last gastro consultation (before I started posting here) that this IS an illness that could get worse. The gastro mentioned surgery and thats when it just sunk in. Then come here and you guys kind of confirm that possibility. Im not scared, I feel now like Im finally armed with some proper information. When I said I was panicking... I guess at first I was a bit down about it, but for me, knowing how to manage the illness and, like you said, get on with life... Im all good, thats great! I just needed some proper support, education, information. ya know.

Thanks again!
genifer

Post Edited (SoIGotIBD) : 6/8/2010 3:16:20 AM (GMT-6)

Im in plymouth now. They seem to be on top of things here.