This is becoming a doctor vs doctor thing. My PM doc is upset at how "people in positions of power" are speaking un-truths. It is very sad. She has been fighting, and I have been so happy to have a...
I have not used adult diapers, but have used incontinence pads to put on the bed if I know I am struggling and may have an issue. Has saved me more times than not. Yes, mess in underwear but at least...
I once tried going "vegetarian" when I met my wife, as she was one too. I spent a lot of time on pasta, as I couldn't eat salads and raw veggies. I ended up getting really sick and was lacking in a...
I know heat doesn't bode well for me. It is why I don't spend a lot of time outdoors in the summer... I end up getting really sick and end up on the toilet when I am out in heat for long periods. I...
It has been a busy week last week, but a lot of necessary things happened. A couple weeks ago, I ended up in the ER again for upper GI bleeding. They figured it was probably Crohn's related, due to...
AMDD - So sad to hear this situation. It is unfortunate but seems to be common. It sounds more like you are dependent on them than addicted. But even so, they are barely helping which isn't good. If...
From a guy perspective, meds can have certain effects on people. Not specifically sure oxy would nor had that experience... but I am on some anti-depressants and SSRI's that can cause some issues...
It could very well be a stricture! I have pain almost constantly, but I have also had three surgeries and am missing half my small intestine due to that. My PM doc thinks there is autonomic...
I have been on it almost 6 months without any luck. I had great luck on Tysabri, it's more dangerous sister drug... but eventually became JC Virus positive and had to get off of it. In studies, it...
Pitmom... is Gabapentin one of those? I am titrating up on that for not only my migraines, but neuropathy as well. I am currently on 600 in morning, 300 midday, 600 at night... titrating up to...
I am with Alcie on this one. MM isn't legal in my state, but even if it was... I would pursue cautiously. I use this example as the same one on the Crohn's board... YMMV...everyone's body is...
Welcome Gachi! I have historically had my Crohn's in my ileum (3 surgeries in that area), as well as other areas in my small intestine. I unfortunately have been a person on all the available...
I do get that... but my PM doc and I have discussed this very subject on the Nucynta. All her patients have much less side effects and research backs it up, but again still got put into schedule II....
Alcie - Yes, you would for sure replace the tramadol with the nucynta. If you have seen online, they typically call tramadol "Baby Nucynta" as they are very similar medicines, only nucynta affects...
Alcie.... I wanted to pipe in about the Nucynta. Since January, I have been on it and it has been a lifesaver. Not only are side effects so much more tolerable for me than oxycodone, but they give me...
You all have been huge help...even if you don't feel like it! The support and ideas have helped me keep up with it. Just so mentally and physically exhausting.. especially having to forcefully...
Well the doc in Chicago won't see me as a regular patient... says he needs a point doctor and suggested a doc at the health system I left last year due to lack of care. I am so over this passing the...
Susie... early update after my first dose at the lowest 150 mcg dose..... it worked better than Nucynta half the time. I felt it work within five minutes and the pain, while not gone completely,...
Susie... totally been reading a lot about Belbuca and cautiously optimistic about it. She has brought it up before, being that even the Nucynta I am on is being frowned on due to it being a schedule...
It is becoming a very real thing. I just met with my PM doc today regarding my care, and two doctors she knows that are good PM docs are either being forced out of the practice or their license is...
Gumby and Susie: The appointment with the different PA went well. She was the one I saw in the hospital right after I got admitted, and she is a little older/more experienced. I need someone like...
Hi Gumby, Lo and behold, Dr. Rubin submitted his recommendations to my local docs here in Milwaukee, but he wants them to handle things here instead of confusing things. I am going to call my local...
Hey All, Exhausted today, but just got out of the hospital after being in there a week on IV/oral steroids. I am still dealing with a frustrating thing of my local GI docs talking about my pain...
I am not sure if there was ever a study done for those with Crohn's and Colitis, but many who have this disease seem to be more empathetic to others, have a huge caring side, and work extra hard...
So sorry to hear your struggling, Juliet! I know the last surgery I had it was certainly a struggle for me, compared to my previous ones. They had me on TPN for a month following, so I could get my...
I want to pipe in, as I am also on an alternative to the typical opioids. The one I am presently on is Nucynta, which many have said is like a stronger tramadol. I will say that it works as well as...
Gumby... think that is a great idea, to add in the miralax. Either that or MOM, I have had better luck with MOM once a day after lunch than I did with miralax after lunch. My GI is OK with me being...
There is an infusion clinic that I go to that infuses that as part of their immune support. I go there maybe every other week when I feel dehydrated, get a liter of saline mixed with potassium,...
Hi Gumby... A couple things. Dr. Rubin is who I am seeing, so it will be interesting to see what he says! My case has been a difficult one for the 20 years I have had it (30 now, so 2/3rds of my...
@Gumby.... I wonder if that doc you see at U of Chicago is the same one I am seeing in a week and a half? I am dealing with issues of things stopping up right after my ileum.... motility issues. Some...
Juliet... you are also in my thoughts and prayers right now. I just met with my pain doc today who was discussing how we "need to get a handle" on whatever is causing this intestinal pain that I am...
Karen, This does make sense. I am personally going to try to regulate as much as I can with the miralax and rely less on the senna. I know my test with the miralax showed some good results... so will...
Karen... just a follow up. Saw my GI (actually a PA) on the bitter cold Wednesday. She said recent studies on senna show that it isn't habit-forming and can be used long term. I wonder if you are...
Wow... thank you Karen! Your post is eye opening to say the least. I am surprised my previous GI was so open to using the laxatives like Senna on a regular basis. I know my new GI has some concerns,...
Karen... I so appreciate your comments and advice! As Juliet is struggling... seems her and I are running paralel on issues right now and sounding quite similar. Miralax has been the common one...
Looking at Karen's response... I do agree with her on a lot of the functional bowel issues. And there could be "referred pain" that you are dealing with. I know my issue stems from things getting...
Juliet... I just commented on your post as well. How interesting that we both have similar things going on. I do believe there is adhesions and/or scar tissue in my small intestine, in addition to...
Wow!! So similar to what I have been experiencing... and unfortunately (or fortunately) new sets of eyes are figuring out our issues! What I am learning between your situation and mine is that we...
Susie... I think you are right. That is exactly what has happened. Every time I saw him, he seemed stressed out beyond belief. They have over 2,000 patients, and maybe 4 IBD docs between them. That...
Straydog... the funny thing about this doctor group... is I found out that they send patients who they can't help, to the doctor I am leaving. One of their PAs who saw me kept trying to talk him up,...
An update: This is a Crohn's flare, and have been admitted since the 29th. Just did an MRI today to see if my lymph nodes shrunk at all or are remaining the same. If they haven't progressed or done...
cyclinglady: I am actually in the hospital as we speak trying to figure out my issues. It looks like it is a nasty flare afterall. I went to a different ER and health system due to my frustration....
Hey Juliet... just wanted to quickly update... The scope shows that I have moderate disease in my large intestine into the small. That isn't even saying what is going on in the small. This goes...
I went to a totally different hospital system ER last night, where I have some friends who work at. This experience has been tons better.. I felt like they were trying to fix me and not try to prove...
Juliet... interesting that your issues are running alongside mine. I have tried to do dulcolax, senna, etc to get things moving correctly and still having issues. Intestinal pain that was so strong...
Hey all... just a quick update.... The big battle has been trying to regulate my large intestine. I have been trying the miralax, dulcolax, and now senna... and the issue is while they have helped...
I always needed what would be considered "dual therapy" for things to work. Going all the way back to 2002 when I started Remicade, I was on Remicade with 6MP, which is similar to methotrexate. I did...
I think I may have something to add, at least to empathize. I posted in another thread about my GI having issues helping me out lately. I feel like this is a similar thing, that they can't find...
I was in the ER last night for a decent amount of pain, which they gave me a hard time about due to the fact that my CT showed "mild Crohn's" where I couldn't have had that type of pain. They were...
Hey All... An update of sorts. They finally agreed last week to allow me to have a CT scan. I had it last night, and was called by my Doc's PA who I usually deal with who told me that I have active...