Recent hospitalization/Crohn's flare

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 coming from the constipation only. The practicing RN keeps stating she thinks that is where my pain is coming from. She basically asks me everytime if I have been able to get off the Nucynta, which I always reply no as I am always having other pain... and she keeps giving me the speech about it. I get that I have some constipation issues, but I think there is a bigger underlying issue going on here. I can treat my constipation and have for a long time, but I think there is active Crohn's or motility that is causing this issue.

That being said, I saw Dr. Rubin in Chicago. Wonderful doc and the only one who has said "we will figure out what is wrong, no guessing" and that he isn't convinced my Crohn's was calmed down all the way. He may be on to something with that, as I did get admitted a week ago for partial obstruction and active Crohn's.

I am tired of doctors just guessing. I asked if there is a way I can see him as my primary, and what it would take. It is a two hour drive to see him, but well worth it in my book. He seems like the only one who is willing to go beyond "constipation" being the end all. Again, I get Nucynta may exacerbate it, that but I was having constipation last fall without any narcotics and always was exhausted, which instead of treating the pain I was having... they thought giving me a bunch of vitamins and fluids 3x a week was the answer.

Why is it that this field has gotten so difficult? Are doctors just that overworked that they aren't able to handle things or really concentrate on cases like mine? I just don't remember so many doctors who are just "giving up" or "assuming" things only. Which is really a stress to me...

Hi Jake
I'm glad to hear you liked Dr. Rubin. I suggest that you continue to see him until you have everything sorted out, even if it means driving two hours. Once you have everything stabilized (and I believe you will one day) then you can possibly switch to a local doctor. I am six hours away but he really helped me when I needed it. I wouldn't hesitate to see him again if I get into trouble. I hope you get everything sorted out soon!

Hi Jake,
Sorry you are still without a plan you are comfortable with. This really is a frustrating disease! I am considered to be in remission, but like you, I have terrible motility problems. I use a combo of Senokot alternating with Miralax and then sometimes I have to back off everything because I end out with diarrhea. I hate even calling it constipation...my stools are always soft but I just can't get them to move on it's own and I get in pain and very uncomfortable without the laxatives. I was told by colonoscopy and CT that everything looked good a few months ago, and ate raw carrots and ended out with a bowel obstruction. So managing avoiding raw veggies while also managing slow motility has been quite the challenge! But I haven't needed pain medication like you and I'm concerned that maybe your body has gotten dependent on the pain meds which is complicating things. I'm wondering if you got on a laxative regimen if you could then work to decrease and eventually discontinue the ny****a pain med?
I think it's more complicated for you because you also have active Crohn's which may be complicating the pain issue. I wish I had a better suggestion, but I haven't really completely figured this out for myself either. Hang in there!

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 that on my case. She didn't question my use of the Nucynta, which already is am improvement! Again, I think that NP is around my age (30) so she is inexperienced and a bit biased against opioids probably due to the manufactured "crisis". It should have never been an issue because I do have a pain management doctor who is managing the pain issues.... so I don't know why she always had to make me feel bad about it.

She thinks that I have some IBS interfering, which could really be the case. I have anxiety and depression, partly due to the issues in this past year, I am sure. I have always been high strung though, so this could have been an ongoing issue. I don't doubt if that is part of the reason I am having some constipation issues (IBS-C, I think?). Since my last surgery, the constipation thing has been a big issue... and even without the nucynta or any opioid for that matter, I had that issue. The thing is that last fall when I wasn't on anything, I was always exhausted because of internal intestinal pain, outside of the constipation issues. I was talking with my wife about this subject... I always have some sort of pain I am dealing with at all times, but then I do end up constipating which causes additional pain. The nucynta is to treat that ongoing pain, which I still don't know what it is. Though the PA and I agree it could be scar tissue or adhesions due to my three surgeries. I bet that doesn't help the motility, either.

I have found success in senna-s before bed and MOM around lunchtime, if needed. That has seemingly kept me pretty "regular", though things are still sluggish. Not sure if that will every be fixed.

The thing with me, I think there is a lot of things going on that are complicating things. It is hard to sort everything out, because of it all. My Crohn's is still a bit active, which is an issue too. I am hoping that the entyvio kicks in soon. They upped my 6-MP to 75mg two weeks ago, and my next infusion of entyvio is next week.

All I can tell you is this... I may be somewhat dependent on the Nucynta, but it has allowed me to work basically full time again, when I wasn't able to do it before due to my daily pain. I work part time at a non-profit, and have been working to start up my own photography/videography business to replace that eventually. I need to work for myself to allow for the flexibility to handle my disease. If taking an opioid can allow me to do everything without dealing with the exhaustion of pain, I will continue to take it and ask for it. Though I really wish to find out where this pain is coming from, but I am guessing without a scope we won't know for sure....

Post Edited (JakeB) : 5/5/2019 9:23:53 AM (GMT-6)

Jake, I saw your post in the chronic pain forum yesterday & decided to post here. I am not familiar with the new pain medication your PM dr is talking about, so I went to Drugs.com & looked it up, as it is not one that I have seen members take in the CP forum. I suggest that you go to Drugs.com & look up this new medication, along with the Tramadol. I am a little confused about her rxing it to be honest after reading about it. Any pain medication taken for a long period of time can make a person become physically dependant. Addiction is a word drs toss out all the time sadly, when they should be telling a patient your body can become physically dependant. Back in the old days this is what drs told their patients, now a days its addiction being thrown out. Really burns me, I have been in pain mgt since the 90's & yes I have a physical dependance, but I take my medication responsibly!

Jake, it would not surprise me a bit that you have malabsorption issues considering all of your surgeries. I had 12 inches removed in a resection & this too has been a problem with me. I have had 2 intrathecal pain pumps implanted with decent results. The catheter has a mass on the tip & nothing was getting through, so we stopped refilling it 2 years ago. I was all set to have everything replaced & had a cyst develop & got a staph infection. It took 9 months for it to heal, had wound care for 3 months. Now, cardiologist is not wanting to give a green light for surgery. I plan to see how things go over the summer & will see where I am at then. I will soon be 66.

This new medication may work because you will have a different delivery method. I have seen numerous people have absorption issues after having resections & the various weight loss surgeries. We've had a few CPers have problems with oral meds not working after weight loss surgery, their only option is either liquid medications or going the rectal route. Either of the two is hard to get a dr to rx the meds that way. Some had letters from their surgeons confirming the issue & PM drs said no.

I agree with your drs thoughts on pain meds eventually being eliminated. As I said in the other forum, this war on drugs started initially over the effect on the economy long term. More people not working & going on welfare, add in the tremendous numbers of people on SSD.

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 buck thing.... this isn't going to work as my current doc has a totally different idea of treatment than the Chicago doc recommendation. They are making things worse as I am now having a panic attack due to this.

What has happened to healthcare and who is to tell me that two hours is too far to be a regular patient? I did it before. Egos are hurting me. So done. I don't even know what to do anymore.. as I sit still flared up and feeling like crap. Guess I will only continue to mask the symptoms with pain meds instead of treat it, as no one can agree on how to care for 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 advocate for myself. My wife is going to get involved now, too, to be a bit of an extra push in the appointments.

Maybe a trip to Cleveland Clinic or even to see Dr Binion in Philadelphia... he was a big IBD doc in MKE until he went out east. My PM doc knows him well as they worked together for years at the Medical College of WI.