Hello fellow J-Pouch members.  My road has been a long one so my quick summary is UC diagnosis 1992; J-Pouch Surgery 1999; several bouts of Pouchitis 2000-2012; several Abscess/Fistula procedures 2012-2014; constant Perianal Excoriations 2014-Present; monthly Remicade infusions from November 2018-Present.  My anal area currently looks like a war zone with no relief in site and no cure for the issue.  Surgeon states he can't remove them because they will just return.  PCP and Gastroenterologist flat out refuse to write me a script for pain.  PCP recommends i just call it quits and get an ileostomy.  I think this is all due to the crisis and not because they think i will get addicted but because of all the additional hassle and checking the government will do against them.  What I don't get is when will these docs start treating our symptoms like a lifetime debilitating issue?  Do we tell Sickle Cell Disease people to just suck all the blood out their bodies, Spinal Lumbar sufferers to have their spine removed, Knee deterioration people to have their leg cut off?  So I am trying to find out if any other people have this challenge and what steps have been taken to find some type of relief.

Many Thanks

Original Post
Orlando Dawg posted:

 I think this is all due to the crisis and not because they think i will get addicted but because of all the additional hassle and checking the government will do against them. 

This is a correct conclusion- they are worried about their butts and not yours. The opioid crisis has caused doctors criminal liability, and when they see their peers going to jail for overprescribing pain meds to opioid addicts who then OD, they stop doing it. One of my high school classmates is currently in jail (federal prison- 7 year sentence) for prescribing pain meds like candy to a woman who OD’d from them. 

My PCP has also stopped prescribing sleep aids like Ambien, even though he used to give me scrips for it. I never had any addiction issues. He is just running scared and doesn’t want to lose his license or get prosecuted. Being someone who is in the system myself (I am an insurance defense attorney who frequently has personal injury cases where the treatment is driven by pain med addictions), I understand why he is doing what he is doing. It is what it is. You gotta live with it or get drugs in the streets, but the street stuff is all laced with fentanyl and it could kill you if you don’t have a reliable supplier. 

CTBarrister posted:
Orlando Dawg posted:

 I think this is all due to the crisis and not because they think i will get addicted but because of all the additional hassle and checking the government will do against them. 

This is a correct conclusion- they are worried about their butts and not yours. The opioid crisis has caused doctors criminal liability, and when they see their peers going to jail for overprescribing pain meds to opioid addicts who then OD, they stop doing it. One of my high school classmates is currently in jail (federal prison- 7 year sentence) for prescribing pain meds like candy to a woman who OD’d from them. 

My PCP has also stopped prescribing sleep aids like Ambien, even though he used to give me scrips for it. I never had any addiction issues. He is just running scared and doesn’t want to lose his license or get prosecuted. Being someone who is in the system myself (I am an insurance defense attorney who frequently has personal injury cases where the treatment is driven by pain med addictions), I understand why he is doing what he is doing. It is what it is. You gotta live with it or get drugs in the streets, but the street stuff is all laced with fentanyl and it could kill you if you don’t have a reliable supplier. 

I understand and agree with all that.   But I have been thru major surgery twice with the IPAA, double digit outpatient procedures with the fistula and abscess and received pain meds thruout all to help manage the pain from that.   Now after the state of Florida passes some stupid rule on July 1,2018 I am considered a risk to OD so they back away?   That’s total BS.  I was never a risk in their eyes before.  Does anyone know how to bypass these timid doctors and get enrolled with some pain management group so I can receive the meds?

While pain medication can reduce the discomfort you are having, it will not eliminate the cause.  I suggest that you get a second opinion from a doctor with lots of experience in treating J pouch problems.  Unfortunately, doctors like your PCP often recommend an ileostomy without considering the quality of life that their patient desires.  The two alternatives to a conventional ileostomy are the K pouch and the similar BCIR, both of which do not require having an external bag and both have high success rates.  I would definitely stay away from “street” drugs due to lack of quality control.

ytcrockpot posted:

Have you tried a pain management doctor? 

My pcp writes me Vicodin prescriptions although I don’t use it for pain, I use it for intestinal slow down. Maybe you should try switching doctors. What part of Florida are you in?

I live in Orlando FL.   I have had the same PCP since before my IPAA in 1999.   None of this was a problem before the state law passed on 7/1/2018.   I could a 30 day supply, no questions asked.   Now it is flat out refusal.  

BillV posted:

While pain medication can reduce the discomfort you are having, it will not eliminate the cause.  I suggest that you get a second opinion from a doctor with lots of experience in treating J pouch problems.  Unfortunately, doctors like your PCP often recommend an ileostomy without considering the quality of life that their patient desires.  The two alternatives to a conventional ileostomy are the K pouch and the similar BCIR, both of which do not require having an external bag and both have high success rates.  I would definitely stay away from “street” drugs due to lack of quality control.

I agree on determining the cause but I do not feel I should have to go thru a life changing event that getting an ileostomy would bring on just to manage pain.  As I said in previous reply, do we tell people that have degenerative lumbar in the spine to have it removed and be wheel chair confined for the rest of their lives.   Do senior citizens that have arthritis in their hands have them chopped off?   Of course not!  So why should this be any different?   

BillV posted:

While pain medication can reduce the discomfort you are having, it will not eliminate the cause.  I suggest that you get a second opinion from a doctor with lots of experience in treating J pouch problems.  Unfortunately, doctors like your PCP often recommend an ileostomy without considering the quality of life that their patient desires.  The two alternatives to a conventional ileostomy are the K pouch and the similar BCIR, both of which do not require having an external bag and both have high success rates.  I would definitely stay away from “street” drugs due to lack of quality control.

I have been working with the top center for digestive disease in Orlando and have worked with two of the best colon rectal surgeons in Orlando as well.

I live part time in ft Myers & NYC, docs in NYC so no real problem there getting my meds, hopefully it stays that way. My gastro doc flat out refuses to give me pain meds. Thank god for my pcp. 

I agree with Billy, do research on finding new doc, they may also have other suggestions for you. 

Hope you find some relief 

Sorry to here you are in chronic pain--it sucks. I'm not clear what kind of pain you have, and the cause. Is it the fissures and the absesses causing pain?  Is it that they know you have a clear cause for your pain and can't help, or they don't know the cause and don't "believe" the pain you are in? Either way, sounds like you need a more sympathetic physician. I have a prescription for tramacet but it is specifically for bowel obstructions and chronic pain from adhesions. My doctor calculates how many to prescribe based on a calendar of the obstructions I keep. They do help my quality of life I think, as I would otherwise be in and out of the ER all the time and not sleeping well due to pelvic pain.

I was in a similar situation, and finally made the decision to have an ileostomy. It was the best decision I ever made. I love my ileostomy. I now have my life back. I can do everything I want, and I’m pain and hassle free. 

I’m so sorry to hear your having these issues.  Please consider having an ileostomy, and all of your issues will be over. Good luck.

 

 

duck11 posted:

Sorry to here you are in chronic pain--it sucks. I'm not clear what kind of pain you have, and the cause. Is it the fissures and the absesses causing pain?  Is it that they know you have a clear cause for your pain and can't help, or they don't know the cause and don't "believe" the pain you are in? Either way, sounds like you need a more sympathetic physician. I have a prescription for tramacet but it is specifically for bowel obstructions and chronic pain from adhesions. My doctor calculates how many to prescribe based on a calendar of the obstructions I keep. They do help my quality of life I think, as I would otherwise be in and out of the ER all the time and not sleeping well due to pelvic pain.

With the removal of the large intestine and the absorption role it plays, and coupling that with the fissure and abscess outpatient procedures, it has created leakage.  Now I have perianal excoriations.  This is basically open wounds in the external anal area, one of the most bacteria infected areas of your body.  Currently I have approximately 15 sores in the area.  This pain is almost as bad as the ulcers in the intestine that UC brings on.  I feel all my doctors know about these but because of the Opioid crisis and very strict rules that the government has put in place, they refuse to view this as lifetime pain.  I have tried 5% Lidocaine topical which provides some immediate relief but, as we all know, the next bathroom break is approximately 15 minutes away so the topical is wiped away.  I just don't think I should have to have life changing surgery to stop this.  I already did that with the IPAA.  They need to recognize my pain and treat.   

David W posted:

I was in a similar situation, and finally made the decision to have an ileostomy. It was the best decision I ever made. I love my ileostomy. I now have my life back. I can do everything I want, and I’m pain and hassle free. 

I’m so sorry to hear your having these issues.  Please consider having an ileostomy, and all of your issues will be over. Good luck.

 

 

Not to put you on the spot, but I would like ask a couple of things.  You stated you have your life back.  Do you ever go into public with no shirt on?  Like the beach, water parks, or just outside in your own yard to mow?  If I had to give these simple pleasures up, my life would be worse.  The 3 months I went thru after the IPAA were a nightmare for me.  Sleep was nonexistent due to positioning on my back only, The adhesion for the bag on my abdominal wall caused serious infections and left it in a constant raw state.  I was very fortunate to be able to go on long term disability with no pay loss during that time, but if I had to live my life like this permanently I would become a hermit.  

Yes, you can go without a shirt on. I swim, surf, snow ski, and live life like a “normal” person. I empty my bag about 6 times a day, and I change my entire appliance every three to four days. Some people go longer. The entire change  takes about 10 minutes.  I usually get up once or twice a night to empty my bag. I have no discomfort whatsoever.  I’d recommend doing some research on YouTube about living with an ileostomy.  One other suggestion: if you have an ostomy support group in your area I’d recommend attending to get other people’s experiences. Please let me know if you have any other questions. 

David W posted:

Yes, you can go without a shirt on. I swim, surf, snow ski, and live life like a “normal” person. I empty my bag about 6 times a day, and I change my entire appliance every three to four days. Some people go longer. The entire change  takes about 10 minutes.  I usually get up once or twice a night to empty my bag. I have no discomfort whatsoever.  I’d recommend doing some research on YouTube about living with an ileostomy.  One other suggestion: if you have an ostomy support group in your area I’d recommend attending to get other people’s experiences. Please let me know if you have any other questions. 

Is your bag external?  

Yes, an ileostomy has an external bag. No one knows it’s there unless you tell them. Also, a lot depends on where the stoma is placed. Mine is below my belt line. I’ve seen some that are higher which would affect their visibility if you weren’t weary a shirt. 

David W posted:

Yes, an ileostomy has an external bag. No one knows it’s there unless you tell them. Also, a lot depends on where the stoma is placed. Mine is below my belt line. I’ve seen some that are higher which would affect their visibility if you weren’t weary a shirt. 

Ok.   Well as I stated before,  the 3 months I had to have a temp one was pure hell.   I look back to when I was told getting a J-Pouch was the only solution and wish I would have not been so quick to jump to that decision.   So getting what amounts to the same type of surgery is not going to be an option for me this time.   Thank you for your open and honest discussion.   

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