Maintenance meds post j pouch removal?

If you have chron' s...you need to treat it with medicine.  Gotta prevent occurrences elsewhere. It makes a lot of sense unfortunately.

have you looked into cannabidiol (CBD) based medicines before? here is a link that has 10-15 related medical journal articles. i use CBD personally, 1-year j-pouch with pouchitis issues not crohns, but CBD seems to help just about everything in the gut!

 

http://www.projectcbd.org/colitis-crohns-disease

 

hope that helps, lmk if you have any questions,

 

lance

Thanks for the replies. Mentally, I have been using the thought of not having to take meds as a positive for the ileostomy. I will just have to adjust my way of thinking. Lance, all that info is amazing. Probably explains why I had no issues with my pouch in my 20s....hahaha. But seriously, it looks promising and I may be contacting you in the future. How do you get the medical marijuana in your system-by smoking it?

good mornin', 

 

there are many delivery mechanisms, the preferred being sub-lingual, ingestion, vaporization, and topical applications.  personally i do all those and also smoke.

 

for issues with the gut, sub-lingual and/or oral ingestion of CBD has shown most effective, and so has the ingestion of THC/THC-A (the acidic form of THC that is also non-psychoactive, unless decarboxylated by heat). 

 

another cool thing, there are even hemp based meds that have 0% THC, and strains such as Charlotte's Web and Harle-Tsu that have <1% THC, created so they would be accessible for patients (including children) interested in the medicinal benefits without the "high".

 

i have read/heard of several stories from people who swear they have been completely symptom free from Crohn's or UC since they started a daily CBD regimen.  the daily amount seems to range from 50mg-100mg (which i would recommend building up to, as with any new ).

 

its been a little different for me because i have FAP not Crohn's or UC, and have self-medicated since adolescence, but i guess i see it more as a way of life/part of life than i do a "medicine".  

 

i definitely see many more positive effects with virtually no side effects, especially when compared to the "medicines" i've taken over the past year that presented all types of negative and paradoxical effects. 

 

 

Thanks for all the material Lance. I realize our situations are different but I am looking to obtain as much info as to what people have experienced and how it turned out for them. I know everyone's story is somewhat different, but one never knows what will help or harm you with these frustrating diseases!! Thanks again!!

I agree with you LORI726.  It is nice to hear from someone that has experience with marijuana. It was legalized in MN and I think just started a month or so ago.  I don't live in MN but my GI is there at the Mayo Clinic.  It was approved for 8 or so medical conditions and one was crohns.  I asked my GI about it 3 weeks ago. I specifically asked if it would help inflammation. He said it wouldn't help inflammation.  I already knew that it helps pain - I'm in a closed group on FB about it. There's a lot of good feedback from California and other people with IBD there.  He said that was an interesting question and that it was approved for crohns but not UC.  He didn't understand why they didn't approve it for UC as well. I was ready to go to Colorado and buy some Charlotte's Web, low THC weed.  But if it doesn't help with inflammation then I'd still have the same problem with chronic cuffitis, which is technically UC, and chronic pouchitis. 

 

FYI - I have a friend residing another legal state that has a doctor's prescription.  She has 6  overlapping autoimmune problems. She makes butter with it in her crock pot and uses the butter to make brownies.  She freezes them and eats one nightly before bed.  She has the dose figured out that way as she has asthma and can't smoke anything. 

 

I'm sorry that you now have a crohns diagnosis now Lori.  It can attack the entire GI system so you probably need to be on some medications.  If it only affected your colon and rectum was it the kind that only attacks there?  I see why you are questioning it.

Hi TE Marie. Thanks for your response! 6 autoimmune diseases...that is awful!! I don't know if there is a Crohn's that just affects one part of the GI tract. In my case, all my recent problems have been perianal/rectal. Over the 20 plus years with my pouch, I have had problems with a stricture here and there so that may have been Crohn's all along and we just didn't know it yet. Of course, all my stricture problems happened after some type of surgery (c-sections, removal of ovary), so maybe it wasn't Crohn's related? Who knows.... I was just shocked when this new colon/rectal guy said I would have to be on meds post j pouch removal . I thought I would go med free until some problem arose. After having a few days to digest the idea that I still need meds, I am a little calmer about the whole thing. I guess my comfort level depends on what kind of meds we are talking about. I would like to be done with the prednisone
and injectable biologics (like cimzia). The other annoying thing about this is that this colon/rectal doctor will do my surgery but then I have to be followed up by the regular GI docs which are impossible to get an appointment with because their office is so busy. My previous colon/rectal doctor managed everything which was nice b/c it was only one person/one office involved. Ok, now I am being really whiny, but I am at the end of my rope with my tolerance of medical things. This is not a good place to be when you need upcoming surgery....hahaha. If the medical marijuana doesn't help with inflammation, how does I\it help with the disease symptoms? Is it used more for pain relief? Sorry if this was mentioned in your post and I overlooked it! Sorry this is so long!! Thanks!!

hi there,

thanks lori276 and te marie, glad you found the info helpful! its a shame that such a potent medicine remains stigmatized and inaccessible to so many who are in pain. i'm glad to see that this is changing, however, and am trying to help as i can. 

 

wish i could say i was surprised to hear a GI say CBD doesn't help inflammation. please refer him specifically to the 2015 journal article "The Endogenous Cannabinoid System Protects Against Colonic Inflammation"  

 

it is a huge help to the community to share new info with doctors and health professionals (it can be difficult for anyone to keep up with research and overcome stigma), but they are then able to share this updated information with patients and colleagues. 

 

here is also link with 10+ medical journal articles related to crohn's and colitis:

http://www.projectcbd.org/cond...-and-Crohn%E2%80%99s

 

and one more to a personal story (from an individual that never smoked/drank), and a link to a subreddit with lots of good stuff:

http://bobbyearle.com/blog/ulc...d-where-have-i-been/

https://www.reddit.com/r/UlcerativeColitis

 

some seem to feel better with just CBD treatment, and some add it to other regimens (sulfa etc), but so far i have not seen a single response to CBD that has been anything other than positive.

 

hope this helps too, wish you both the best, please let me know and questions or comments,  

 

thanks again! lance

Thanks for the links Lance  I doubt that the Mayo Clinic would allow their doctors to prescribe it. They receive a lot of revenue from the federal government for Medicare and it is still illegal federally.   I think I heard Mayo's was going to leave it up to each individual doctor - but I don't recall were I'm remembering that from.  My doc seemed positive about using it for pain. He kinda shook his head when saying the law legalized it for crohns and not UC - like it didn't make sense. I can't get a script anyway.  He knows about my chronic pain, not just j-pouch related, as I have other health problems and I bet he wouldn't be against it if a different doctor prescribed it, ha ha. 

 

I'm having a difficult time Laurie726.  I'm just getting diverted to a perm ileo so give yourself a break!  It would be too difficult for me to have it removed now, mentally.  I know that I could do it if I had to. I had a difficult time when my colon was removed 5 years ago.

TE Marie-did I see you are having surgery the end of this month? I hope the diversion gives your pouch some time to rest and recover. I think I am mentally ready for the pouch removal but I also feel how does one ever know if they are really ready until that stoma is there. I have lost way too many summers with my kids to this disease. Things always fall apart for me when the weather is warmer...never happens when I am stuck in the house in the middle of winter!! I am 41 and my pouch has gotten me through my younger years which I am grateful for. I wish you the best of luck with everything b/c the idea of an ileostomy is still scary whether it is temporary or permanent. I am aiming for surgery in October.

TE Marie-Sorry-I just re-read your post. So you are doing perm ileo and leaving pouch in for now b/c if all the crazy surgery involved?

Hi...I have my j-pouch disconnected and a end ileo, I am on humira for maintenance.

Thanks Cataja!!

Lori, the same as me, every summer something!

I thought I was prepared for a stoma but until you actually have one, it's a different story. I don't think you can ever be prepared, then reality hits Unfortunately. 

Lori - I see a surgeon at cc and asked about taking maintenance meds for crohns now that I have the ileostomy and he said their studies have found it is not needed.  My GI at home recommends it. seems to be a mixture of opinions out there From my experience.  Hope you get answers and can remain med free.  

I would post this question on the healing well CD board. You'll probably get a lot of responses to this question from the cohrons people

Thanks for the comments and suggestion Starry and Ally. I guess I was just hoping for an answer like the one Starry gave. It helps to know there may be no wrong or right answer. How are you doing Ally? I totally hear what you are saying about that stoma. I had my temporary one for j pouch surgery when I was 18 and it really did help me on my path to healing. Of course, the j pouch and not the permanent bag was on the other side of that so that was a big help mentally. I can only hope things improve for you Ally and go well for the rest of us needing surgery. It can't be easy adjusting to the permanent ileo when it is being so difficult for you Ally!!

Thanks Lori, Anixety at all time high! Got to push thru, so hard. I envy people here that take everything in stride and go on with their lives. 

Hi Ally,

Is there a way I can just message you personally? I just want to check in on you now and then. I understand the anxiety thing. I am fine in the normal world but when you put me in a doctor's office or hospital, I become a total psycho. Don't know how many EKGs they made me have b/c of my high heart rate. Now I just tell them I am at the end of my rope and I can't control the anxiety anymore. That is probably the steroids talking more than me!! How long has it been since your surgery? Could anything be awry? Not that I want you to have more problems...just making sure there isn't some reason for your not feeling better. I thought I saw you had surgery in July and that is not that long ago. I do hope things speed up for you though..one can only endure so much!!

Yes i just Private message you with my email

Thanks for asking Lori.  My surgeon is leaving my j-pouch in.  I am not emotionally able to handle that big removal operation at this time. Plus this is what she suggested.  I was hoping I was hoping to have the option of getting an operation to get rid of my cuff and advance the pouch down.  She said that wouldn't help as my pouch is not working. She suspects pelvic floor dysfunction. I am sad but she is probably right.  After she dilated me under anesthesia it didn't improve much. I have chronic pouchitis along with chronic cuffitis. 

 

 

I had my jpouch removed and my dx was Crohn's (fistulas, abcesses, 4cm mass next the pouch).  I take nothing.  It's amazing!  No new issues and I hope it stays this way!  I've not had any issues with my small bowel, so no need for medication.

Thanks LHetti! No drugs sounds like a dream.... May you have continued intestinal happiness!!