Alternative Treatments

Are you taking any probiotics currently? If not, I would start taking them.

Fecal transplants look promising, but you'd need to find someone who knows the procedure.

LDN is iffy. I haven't seen any work done in UC, only in CD patients. Diet...also iffy.

If you've got money to blow, intestinal worms might help but I've only read studies in mice at this point. Anyway, they're highly unlikely to hurt, but getting sterile worm eggs IS expensive.

If your quality of life is severely affected you may want to just consider surgery. There are a number of people here who have had colectomies. Have you tried talking to them?

53rd&3rd said...
Given what my J Pouch has put me through, I'd be more than happy to try that alternative along with many others too. I'm stuck with failed surgery now and there's no turning back.

Could you please start another thread explaining how it went bad and what are your issues now? How are you dealing with them? I am seriously considering j-pouch surgery but all my GI cautioned as J-pouchitis but nothing else. I do not want to hack this thread so I will be really really thankful to you if you could make a thread of your trauma so we could learn from you.

Thanks in advance.

I have taken InSoFla's advice and have recently started LDN.
Also started slippery elm bark

If you just started following her advice don't you think it is a good idea to see how well it works for you before recommending it to others?

BabeintheWoods-

I strongly recommended READING InSoFla's posts.
At least that person will have exposure to alternative points of view.

Members of this forum routinely suggest using pharmaceuticals without knowing the person or their medical history except for a few sentences.

I was a teacher and believe in the value of exposure to information.
The inquiring person can then discuss with their physician or naturopath if alternative therapy is appropriate.
If I had counted on my GI doctor to provide info, I would still be in the dark.

Members of this forum routinely suggest using pharmaceuticals without knowing the person or their medical history except for a few sentences.

Usually when a member of this forum, such as Dr. Q or someone, recommends pharmaceuticals to someone else on this forum it is because they have had a good result with that protocol and wish to share that experience with others.

I don't use pharmaceuticals myself but I would never recommend any alternative medicine without having my own first hand experience with it.

BabeInthe Woods

"Usually when a member of this forum, such as Dr. Q or someone, recommends pharmaceuticals to someone else on this forum it is because they have had a good result with that protocol and wish to share that experience with others."

Dr. Q? Quincy's profile says self-employed hairdresser in Canada........

I was not aware that any fully qualified doctors contributed comments to this forum.
Please correct me if I'm wrong.

I told my mom I know the majority of people are happy with surgery but it can have problems and if I do end up with a problem or I wake up from surgery and they can't do a j pouch I kind of want to know I tried everything and I had no choice I will kick myself in the butt if I have problems and I didn't try everything.  It is major surgery and you can't go back but the meds are scary too.  What I am putting in my body and doing to my body with them is scary.  It is a tough call either way. 

about the sex thing I was just thinking that the other day! lol You would want to cover your bag up and I know my husband is supportive and everything but men and women are only human and it isn't a pretty sight exspecially when you are in the moment. Also, it is kind of "nasty" (I am not trying to upset anyone please don't take it wrong) will he think I am nasty.  He has never said anything except the other day he put his arm around me and said I would never leave you or think you are gross if you do have to have a bag. I love you! It will be alright. But in my head I think he will think I am gross and not find me attractive anymore.  I know I have other things to worry about but this bugs me also. Also, gaining more weight on the pred again. Ugh!!! It never ends.

53rd&3rd said...

Malkavian said...


If you've got money to blow, intestinal worms might help but I've only read studies in mice at this point. Anyway, they're highly unlikely to hurt, but getting sterile worm eggs IS expensive.

Given what my J Pouch has put me through, I'd be more than happy to try that alternative along with many others too. I'm stuck with failed surgery now and there's no turning back.

Understandable, but they're a few thousand USD per dose and hence not affordable for everyone.

WIMOMOFTHREE, do you know if you would be a good candidate for a jpouch surgery? If so you would only need the bag for several months, rather than your whole life. There are complications for both surgery types but from my readings the majority of people have good results. However, make sure your doc has ABSOLUTELY POSITIVELY RULED OUT CROHN'S as a diagnosis before surgery.

As for methotrexate, I've known someone who had to take it for I think fibromyalgia...she hated it. I don't think it's as well tolerated as the TNF blockers.

ItsAlwaysSomething-We used to have an MD here. I haven't seen him on in awhile. We DO have several researchers/grad students including myself, bookwormgirl and deltaforce. Also, forget reading someone's post for information. The best places to get information on a given topic is the CCFA website for general things, or doing a pubmed search.

Oh, the doctor has done tons of blood work and scopes down my throat and stuff like that and nothing has ever showen I have crohn's. She did say they will do a full work up before to definately rule it out.  I know that is one of the things that scares me.

     Wimomofthree.....don't let the thought of surgery frighten you.  As you know, I have a permanent ileo and it has been a Godsend.  I was not a candidate for j-pouch.

     My GI doctor never mentioned that worm procedure.  I questioned fecal transplant and he was horrified by it.  In his opinion, there is a very good chance of infection.  However, he had no qualms about placing me on Remicade and then Humira..lol.  Guess he wouldn't make any money on the fecal transplant.

     I can understand your wanting to try anything within reason before surgery and I certainly do not blame you.   I just don't want you to fear surgery.  The most important thing is to find an excellent surgeon, one who is very experienced in the type of surgery you seek.

     My colon was not diseased at all.  In the twelve years I suffered with ulcerative proctitis, it never traveled further into the colon.  However, they will not just take the rectum..the whole colon had to go .  My surgeon told me I had made the right decision though....he said my rectum was badly diseased.

     The best of luck to you!  I'll be praying for you.

Have you looked into clinical trials? I know there is a trial for MultiStem right now that's recruiting in some parts of the US.

I am allergic to imuran and all 5 Asa's. I have not done any enemas except fleets when having tests done. This is one of the things I have on my questions list. I have tried numerous probiotics and I always get a really bad rash from them. That is about it. I am going to look into the alternative treatments.