[Crohns] Crohns Cures

inchydoney

Thanks Chump for the tips

I was on mercap and imuran long enough for them to make me feel like crap - i couldn't function - felt run down for weeks and then got a vicious ear infection that i could not fight. I never felt such pain in the side of my head before. Aso soon as i stopped the imuran - i did feel better. i was on higher doesese of steroids then and asaclon - its as i have tried to reduce my steroids that i run into trouble. I was ok at 20mg sytreoids and taking asacolon but when i had to stop it becaue of headaches i went into a flare up - that was august and it has not stopped.

I too was with a doctor who seemed far too busy and had way to many clients, was very unpunctual etc so i changed. I now go to the colorectal clinic in vincents and find them very helpful and open there - they will always try new things. Thye just want me off the steroids after 3 years and i understand why. They have no problem goving me a shot of infliximab - i have the problem with it. no western drugs have worked for me to date and they dont know the long term effects of infliximab.

Im also very luck in that my father in law to be is a GP and is great support

I havent tried the immodium though. Has anyone tried the vitamin E enema?
http://www.newtreatments.org/ulcerative%20colitis.php

Ihave been advised to get the op but in my head it does not make sense - it is not solving the root cause - it is just removing the part that is being affected.

HelterSkelter

inchydoney, I have had the operation and I have no regrets. I had UC, not Chron's. For me it means I have my life back. No more urgent rushes to the bathroom, no more steriods, or any other medication whatsoever, no more feeling run down, eat whatever I want whenever I like (and drink as much alcohol as I want!!), feeling 100% healthy again - don't ever feel run down, never absent from work anymore, able to play sports again, go on holidays without worry. The list of positives is endless. The only regret I have is that TSO was not around when I had the op (2002). I would like to have tried it, I read the reports about the trials and it looks promising.

The_Conductor

HelterSkelter- you're lucky....
The big difference between UC and Crohn's is that the operation effectively cures UC while Crohn's can recur randomly (anywhere at all in the gastrointestinal tract or in rare instances externally). I've now had 5 operations- and while I'm pretty ok, I am on a very restricted diet- low residue and low fibre- so even when I'm in good form, I can't drink more than one drink and have to watch what I eat and ask whats in sauces etc. the whole time. I'm also on iron IV every 3 months and calcium/VK serum and B12 etc by injection. It is a never ending battle.....

HelterSkelter

Sorry to hear that smccarrick, must be very tough for you. I do know several Chron's patients though who went on to have a normal life after the op with no recurance, I suppose it is the luck of the draw.

chump

Nice to see the responses.
Sorry to hear about your troubling symptoms smc.

inchy: thanks for the response, go to vincents myself. Good doctors.
I ran into the withdrawl from steroids = flare thing for a long period. Imuran and aan infliximab or 2 have helped keep me away from them.

HelterSkelter: good to see you've done well - you seem to have a good attitude. I hope Ive the same attitude and result if I end up in a similar boat. Cheers

inchydoney

Friday 3rd November 2006 - WEEK 12 - Dose 7(a) - 1250 ova

the last couple of weeks have had to been the worst ever. My fiancé has now knicknamed me Kate Moss - pretty much a stick insect.

Up every night very often - cant work - very pale. Went to accupuncture the other day - just about made it - i gave my therapist an awful fright when she saw me. I did pep up after the treatment. Its the diarohea and blood loss that is draining me.

back on herbs - things improved slightly but it is hard to tell. I will complete the worms course anyway but am very doubtful - if i dont complete it, i will always look back and wonder.

I hope my GI will contact me on monday - most likely increase my steroids and get back on track and start trying to taper again once i am stronger. May also start the deipntum but will ask him first.nly 5 weeks to the wedding so i need to get my act together - hoping steroids wont turn me into moon face again!

Chump, i tried the imodium and was amazed witht he results - no blood lass that day at all and a bit more solid. am concerned though of blocking mysefl up totally - it says not to use in acute uc - i suppose this is acute.

The operation is looking attractive again. Thanks for the reasurrance helter. I am worried though so much about it and to be honest it scares the hell out of me. 7 hrs for the first op - then 2 more after. Replumb me after a year with an 80 % succes rate of reconnecting me. Im such an active person that I fear having a pouch will make my lifestyle very difficult - although what life do i have now?

Gotta hit the jacks again! chat soon.thanks for the tips

HelterSkelter

Hi inchydoney,

have you spoken to anyone who had the op? Feel free to PM me if you want to. Or I can recommend you give the Ileostomy & Internal Pouch Association a call, they will put you into contact with someone with a similar background as yourself. Give Cepta Burke a call on 059 9131005

inchydoney

Hi There
well i didnt last too much longer.was brought in to st vincents on monday.what a health system.the built this new hospital out here that still cant cope with the numbers. a huge waste of space for a reception while we are stuck in the old a and e dept - they have made a make shift ward here. it reminds me of a motion picture from war times. for soemone with bowel trouble having the toiltes closed because of flooding is just great.anyway cheers Mary and FF and PDs for the wasteful expenditure on pure show.

ok so im here now.scoped me all that-big flare up-back up on steroids-starting to calm down so am now eating like Mary!hopefully gain some wait and make the wedding in 4 weeks.

its best im here because i was declining at home.probably try a shot of inliximab to see if that helps- thats what the doc here woud like to try.

still taking worms and willl keep you posted.

helter thanks for info-if no luck with infliximab i will follow up

its great to eat properly again!

inchydoney

Hi

Im out of hospital since last wednesday. I now feel great - well alot better.still quite week after 10 days sitting around on a bed.

The inliximab was given to me over 2 hours last tuesday. That night i slept without any bowel movements. This had not happedned in 3 months.I have been improving every day since. They let me out the following day. I am gaining wait, my colour is much better, bowels are normalising.

Its a great feeling. I only took 7 doses of TSO. I didnt take the 8th as i was taking infliximab and wanted to see if it worked.

I am tapering my steroids and am already at 25mg - was up at 40mg. Should get back down to 15mg then the test will be to see if i can get off them.

Im very happy. Unfortuantely i dont know where i stand with TSO. WOuld it have worked if i held on? I dont know but i couldnt have gone on any more - i was on my last legs when brought into hospital.

I nearly forgot what its like to eat normal and sleep normal.

The infliximab has been known to keep people in remission for anything from 8 weeks to 4 years. I dont know if i will get any more infliximab - they just wanted to give me 1 shot to see how i reacted. The staff were brilliant in vincents and gave me great support.

chump

inchydoney wrote:

The infliximab has been known to keep people in remission for anything from 8 weeks to 4 years. I dont know if i will get any more infliximab - they just wanted to give me 1 shot to see how i reacted. The staff were brilliant in vincents and gave me great support.

Congrats
1 question though - why would not have another infliximab if it is borne out that the shot did a good thing for you?
And at the same time you've no problem going/staying on steroids?

The side effects from long term steroid usage can be horrific.

Not having a go or anything, genuinely curious!

Hope you're still in good form by your wedding. good luck

The_Conductor

chump wrote:

Congrats
1 question though - why would not have another infliximab if it is borne out that the shot did a good thing for you?
And at the same time you've no problem going/staying on steroids?

The side effects from long term steroid usage can be horrific.

Not having a go or anything, genuinely curious!

Hope you're still in good form by your wedding. good luck

There is a steroid which has been developed specifically for those Crohn's sufferers who are on long term steroids (or recurrent steroid use) its called Budenofalk. Its a very localised delivery system in the intestinal tract- which means the actual steroid intake is much lower. I was on up to 60Mg of Prednisolone- but can happily make do with 12-15Mg of Budenofalk. Have a word with your consultant about it- maybe it might be a possible course of action?

Re: side effects of long term steroid use- I have massively reduced bone density and now have to have a dexa scan done every 6 months. I'm on the CaVD tablets (6 a day) but only sporadically as they cause renal problems.

Brittle bones at age 32......

inchydoney

ìm not ruling out another shot of infliximab. i am very - well i was - nervous about it seeing as it is so new and doctors dont really know the long term side effects of it if any. I have tried so many drugs all with detrimental side effects to date. Anything that messes with the immune system is a serious drug and scares teh hell out of me to be honest.

I dont want to stay on steroids - my priority is to get off asap. Thats where i hope the infliximab works for me.Hopefully ill be able to keep going down. if it doesnt work this way i willl have the op in the new year.

I had a dexa scan in july 2005 with mild osteopenia in one of my hips. i have been on calcium since then. they wont do another dexa so soon apparently. i just have to hope there has not been much more damage in the year or so since that scan.

Haveing a great day today - down to 20mg steroids - should be back to the 15 within a few days then the real test wil be downwards! Feel better already on the lower dose. Gaining weight again - even in the 6 days since ive been out im putting on the pounds..

Thanks for advice re other loaclised steroid - will check out.

Cheers lads.....didn't think id feel this good again. You foregt what it is like when ina flare up. Had my first pint of guinness the other days in 4 months .....heaven

HelterSkelter

Glad to hear you're doing better inchy, hope it keeps up. I was offered Infliximab last year while I was in hospital. Had a bad flare up of cuffitis (inflamation of the join between the rectal cuff and ileoanal pouch) but reading the safety information on http://www.remicade.com/global/index.jsp scared the bejaysus outta me so I turned it down!!!

DrIndy

Doctors wouldn't offer a therapy unless they felt you would benefit more than the risks of the therapy entailed.

but its always a personal choice.

DaBreno

Hi all. Just wanted to wish all the best to other Crohns sufferers. My own has been in remission for almost a year now. Have been on asacolon for 4 ****e years previously. After discussion with my consultant, Im going off it in January and will try to adjust to normal life. Im glad to say it never got to the stage of Steroids(almost) or surgery. I know someone who has had both and hope I can go on to dodge that bullet.
Wishing ye all the best.

o1s1n

hey, as far as cures goes, I had surgery at the end of August and i feel totally cured. Its absolutely insane. You get so used to feeling sick on a daily basis you forget what it feels like to be normal. Eating any food i want. Three months later the novelty still hasnt worn off!

I went through an absolute year of hell. Couldnt eat anything. Extreme pain on a daily basis. Constant gurgling and cramps. I could try and attempt to list all the medication i was on but i honestly cant remember. Lost quite a lot of weight. In hospital overnight for about a week on three occasions. One occasion i was rushed in the back of an ambulance. I really thought that was it. There was no getting better.

Surgeons removed a foot of my large bowel. Found a huge abscess in there too around my ilium. When My main doctor saw the size of it, he actually apologised for making me wait so long for the surgery.

Just hoping now it doesnt come back and if it does, in say 10 years or so, i'll jump at the chance of surgery again!

A month of post surgery pain was nothing compared to having that every day.

dame

Hi, I realise this is a bit off topic but this is something I wonder about.

My other half has a very close relative with Crohn's Disease. He suffers terribly and has been unable to work or have any quality of life in many years.

I read somewhere of a theory that Crohn's disease and inflammatry bowel conditions can be caused by the child being given solid food before they're ready. This caught my attention bacause the mother of this particular man always says what a hungry baby he was and that they started giving him baby rice when he was one week old. Current guidelines are not to start a baby on solids until he is at least 17 weeks older than his expected due date (so for a baby born a little bit early this would mean he would be older before given solid food).

The reason I am interested in this is because I am afraid that the condition might run in the family and my daughter could develop it when she gets older. What I would like to know is what age were the people here fed solids at? And do you think it is this rather than genetics which might cause the disease?

HelterSkelter

Hi Dame,

I never heard this theory before and I doubt there is any truth to it. None of the doctors I spoke to ever mentioned it.

The_Conductor

dame wrote:

Hi, I realise this is a bit off topic but this is something I wonder about.

My other half has a very close relative with Crohn's Disease. He suffers terribly and has been unable to work or have any quality of life in many years.

I read somewhere of a theory that Crohn's disease and inflammatry bowel conditions can be caused by the child being given solid food before they're ready. This caught my attention bacause the mother of this particular man always says what a hungry baby he was and that they started giving him baby rice when he was one week old. Current guidelines are not to start a baby on solids until he is at least 17 weeks older than his expected due date (so for a baby born a little bit early this would mean he would be older before given solid food).

The reason I am interested in this is because I am afraid that the condition might run in the family and my daughter could develop it when she gets older. What I would like to know is what age were the people here fed solids at? And do you think it is this rather than genetics which might cause the disease?

I've heard similar stories to this previously- there was also a Phd thesis based on this premise done at TCD about 3 or 4 years ago. In the TCD thesis the student looked at gastrointestinal diseases among adopted people- and tried to prove or disprove a correlation with the general population and babies who were breastfed. In fact they did manage to prove a disproportionately large percentage of adopted people having gastrointestinal diseases- but it was unproven as to whether this was dietary related or a result of environmental factors or stresses. I was sent a copy of the study at the time- I will try to check my archives and if I find it see if I can get permission to post it here.

The current thought on Crohn's Disease highlights a genetic susceptibility to the Crohn's manifesting itself- but this manifestation might depend on environmental factors (diet and stress being the two highest rated factors). Previously it was thought that Crohn's was an immuno-response related to the presence of Tuberculosis bacterium (particularly in improperly pasteurised milk products and cured meats)- while this has neither been ruled in-or-out, it doesn't really feature on the radar in recent studies.

Shane

blues2

Interesting treatment for Crohns disease
From:
http://www.firstwordpharma.com/node/867056

Sanofi announced Monday an agreement to licence an experimental antibody from Glenmark Pharmaceuticals that is being developed for the treatment of Crohn's disease and other autoimmune conditions in a deal worth up to $613 million. Elias Zerhouni, the French company's president of global R&D, noted that the agent "brings an innovative approach to Sanofi's immuno-inflammation portfolio, which we believe may address a significant gap in treating inflammatory diseases."
Under the agreed terms, Sanofi will make an upfront payment of $50 million, gaining rights to Glenmark's VLA-2 integrin antagonist GBR500 for all indications in North America, Europe, Japan, Argentina, Chile, and Uruguay. If approved, the companies will jointly market the drug in Russia, Brazil, Australia, and New Zealand, while Glenmark will retain rights in India and the rest of the world. The Indian company is also eligible to receive milestone payments and double-digit royalties on sales.
GBR500 has completed an early-stage dosing study in the US in which it was "well tolerated with a good pharmacokinetic profile," and plans are in place to initiate clinical proof-of-concept trials in Crohn's disease.
Glenmark CEO Glenn Saldanha noted that the agreement, which sent the drugmaker's shares up as much as 20 percent, is "the first novel biologic outlicensing deal coming from any Indian company." He suggested that 2017 would be the earliest that GBR500 is expected to reach the market.

The_Conductor

blues2 wrote: »

Interesting treatment for Crohns disease
From:
http://www.firstwordpharma.com/node/867056

Sanofi announced Monday an agreement to licence an experimental antibody from Glenmark Pharmaceuticals that is being developed for the treatment of Crohn's disease and other autoimmune conditions in a deal worth up to $613 million. Elias Zerhouni, the French company's president of global R&D, noted that the agent "brings an innovative approach to Sanofi's immuno-inflammation portfolio, which we believe may address a significant gap in treating inflammatory diseases."
Under the agreed terms, Sanofi will make an upfront payment of $50 million, gaining rights to Glenmark's VLA-2 integrin antagonist GBR500 for all indications in North America, Europe, Japan, Argentina, Chile, and Uruguay. If approved, the companies will jointly market the drug in Russia, Brazil, Australia, and New Zealand, while Glenmark will retain rights in India and the rest of the world. The Indian company is also eligible to receive milestone payments and double-digit royalties on sales.
GBR500 has completed an early-stage dosing study in the US in which it was "well tolerated with a good pharmacokinetic profile," and plans are in place to initiate clinical proof-of-concept trials in Crohn's disease.
Glenmark CEO Glenn Saldanha noted that the agreement, which sent the drugmaker's shares up as much as 20 percent, is "the first novel biologic outlicensing deal coming from any Indian company." He suggested that 2017 would be the earliest that GBR500 is expected to reach the market.

Its supposed to be an immuno-suppressant, with simultaneous anti-inflamatory properties. This might replace the likes of Imuran as a Crohn's therapy- particularly as Imuran is a chemotherapeutic drug with its adjacent side effects...... Its very definitely an interesting development.