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Crohns with rectal fistula, seton and PAIN

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Posted 7/5/2018 2:36 AM (GMT 0)
I’ve had CD for 30 yrs. Dr put a seton in my fistula, the seton threads in and out on my rectum. Dr said take Tylenol for pain. Tylenol is not working. I’m headed to the emergency tomorrow room due to pain that is wearing on me.
1. Any advice for dealing with the ER?
2. Any advice on how to deal with the ER for pain treatment?
2. What do I do if they don’t want to help?
Dr is going to be mad coz the do not want u in the ER coz it’s to expensive but Tylenol is not working.
THANK YOU, any advice would be fantastic!
Posted 7/5/2018 10:25 AM (GMT 0)
Unfortunately, I have never found the ER to be of much help. But it's possible that they will give you stronger pain meds if only temporarily. Have you tried calling your doctor and asking for something stronger? All doctors these days seem reluctant to prescribe pain medication or sedatives, seems to be a sign of the times. I think your doctor might be the 1st place to start and if that doesn't work you can go to the ER. Also, I'm not sure if Tylenol #1 would be of much help to you but you might want to give it a try.

Good luck.
Posted 7/5/2018 12:47 PM (GMT 0)
Tylenol doesnt work. ER is not much help but it will set off a chain of events.
Yes, called the dr and she said go to the ER. I don’t think she believes that I will go.
I’m bringing a pillow, ill camp out all night.
This is a new Dr and I don’t think she knows that sending a patient to the ER is a big NO NO.
I’m just doing what I was told.
I can’t sit down, nor will I sit
Posted 7/5/2018 4:21 PM (GMT 0)
Welcome to the forum. I see you have found some threads here on setons & fistulas. I am assuming you have crohns, if so what meds are yoi on for crohns?

I hope you have some luck in ER, most get little if any help when going in to ER. Usually they get told go see your dr. I hope this works in your favor by going & perhaps it will get your gi's attention that you have issues going on.

Take care.
Posted 7/5/2018 5:46 PM (GMT 0)
Headed to the ER now.. IM FRIKN MAD, I do not feel well!
1. Called Dr mon, didn’t get a call back.
2. Called Dr tues, her nurse said Dr said take Tylenol,
3. Told nurse I been doing that, don’t work anymore and that now I’m going to the ER, nurse said OK.

I am going to lay out in the corner on the floor in the ER.

I HAVE 2 STEONS THAT THREAD THROUGH MY RECTUM.
I CAN NOT SIT.. or will sit in the ER at any time.
I’m PISSED OFF .. I’m not mad at anyone in here.
Thanks for the reply smile
Posted 7/7/2018 1:23 PM (GMT 0)
I understand your frustration. I remember my seton and plug surgeries as some of the more painful I've experienced (even worse than my c-sections). However, if your doctor won't prescribe something stronger, you may just need to tough it out. My second seton took about 2-3 weeks before I didn't feel like I had a sharp stick being shoved in my bottom.
Posted 7/7/2018 2:45 PM (GMT 0)

straydog said...
Welcome to the forum. I see you have found some threads here on setons & fistulas. I am assuming you have crohns, if so what meds are yoi on for crohns?

I hope you have some luck in ER, most get little if any help when going in to ER. Usually they get told go see your dr. I hope this works in your favor by going & perhaps it will get your gi's attention that you have issues going on.

Take care.


Thank you for the reply. Yes this is the CD area of HW.com an I have CD.
The problem with what u said about “toughing it out” is that PAIN is a disease in itself and over time will kill you.

I’m very greatful that I have FANTASTIC health insurance zero $ co payments, zero $ ER visits so I might as well use it. I’ve been is the Sacramento area 40+ years and not going anywhere.
Posted 7/7/2018 6:16 PM (GMT 0)
I thought you were headed to ER the other day, if so how did it go?
Posted 7/7/2018 9:35 PM (GMT 0)
WOW, THANK YOU FOR ASKING. Thats very thoughtful of you to ask about my ER visit.
The visit was a success for the most part, I was there from 1130 am till 9 pm on thurs.
I got exactly what I wanted,
1. an x ray of the area, they did a CT and they said no new abscesses.
2. a follow up apt with surgery at 1pm this tues
3. something new to try for pain, litocane gel
4. they dr said I am taking good care of the area and he understands what I have is painful.
5. i never asked for narcotic pain meds, I’m going to let them suggest that.. I willing to try ANYTHING

The thing is, someone commented to me on this thread that “I might need to just tough it out.”

The problem with that is, I feel that would be submitting to a hopeless situation. The feeling of hopelessness is also not healthy. I have no problem with constantly going to Drs Appointments and being a “borderline annoyance” to a Dr I really don’t think much of.

It seems that there are MANY MANY treatments for pain and it’s her JOB to figure one out that works. Like is said earlier, PAIN IS A DISEASE IN ITSELF AND WILL KILL YOU. So if this dr thinks I’m not going to fight for my treatment, she needs to think again.

I figure I just bug her till I get what I want, and I have no problem with showing up for a dr apt. and laying down in the middle of the floor in pain in the middle of the waiting room. I am pretty sure they do not like that smile

Thank you again for your reply, how are you feeling?
Posted 7/7/2018 10:56 PM (GMT 0)
Jason, that was a productive visit to ER, with good results!! More importantly, the ER dr understood your situation. This is where a lot of failed visits go south because ER drs do not know what to do, or simply don't care. I know my limits before hitting an ER & each time I have gone I was admitted.

Perhaps after this trip to ER, your new dr will get a better idea that you were not being dramatic, you just needed help. If this dr blows you off or gets upset because you went, start looking for a new dr. Keep in mind, drs work for us, they get paid to do their job. No different than paying a mechanic to fix your car.

I am doing ok, rarely like to say that out of fear of jinxing myself. Thanks for asking.
Posted 7/8/2018 3:04 AM (GMT 0)
WOW, thank you again for the reply.

The new dr I got is in the same surgery Department that my old one is at. I love my old dr.

The reason I switched is coz last summer I was admitted with a partial bowel obstruction and new dr was called in for a second opinion. She is the one that placed the seton last October. It was my decision to switch coz I said I would get the seton a year.

She is new to this hospital (UC DAVIS in Sacramento) while I am a whiley veteran there. I know all the staff and I really get along well there. It seems that since she’s new and a woman, she kinda has a chip on her sholder. (IDK it just seems that way ;)

One other thing is that she is scheduling my follow ups 4 months apart. Don’t like that. I am WAY MORE HIGH MAINTENACE than that. My old dr was every 8 weeks.

Your comment about me “being dramatic” HAHAHHA it is not hard to be dramatic with 2 setons threaded through ur rectum. And as far as my pain, I hope u don’t think I’m making that up, and ding dong Dr certainly does not know what it feels like.

THANK YOU AGAIN for your reply, that’s very nice of you to take the time.

I’m glad your feeling better. Do you take anything for pain?
I also take adderall which helps A LOT. It’s helps me focus at work and helps increase my energy level. Nothing worse than being tired all day. If I had a choice of pain meds or addy, I’d DEFINETLY chose adderall smile
Posted 7/8/2018 11:10 AM (GMT 0)
Jason,

Have they put you on Remicade or talked to you about going on Remicade or Humira? I was in agony, complete agony, for months and my docs gave me all kinds of Hydrocodone for the pain but it did nothing at all. Had 3 setons put in and honestly, I don't recall them giving me much relief and they became a separate pain in themselves. Then finally, finally, I started up Remicade and got almost immediate relief.

Now, just saying - in today's day and time in the US, doctors are very reluctant to give you strong pain meds, so that is understandable. If you don't get that, you have been living off the grid. As for the setons, they suck, but you do get used to them and they do get better. Over time (I went through exactly what you did, so I feel like I speak from experience), you will learn to move them around and over time, they will migrate into the wound far less. In those circumstances, you can tug them out of the wound and get relief in a day or so.

I'm glad the trip to the ER worked, but generally, I would tend to stay away from there too. The ass is too specialized an area for a generalist to be down there. An ER doc probably does zero setons a year and has very little experience with them. A good butt doc probably places 4-5 a month and knows what's going on.
Posted 7/8/2018 11:20 AM (GMT 0)
Jason,

Super hot baths for the pain are a good, but temporary, relief for the pain. I'm hopeful for you that the lidocaine gel works, but I'm going to go out on a limb and say it's not going to give you any relief.
Posted 7/8/2018 3:27 PM (GMT 0)
Jason, I too, am wondering what medications you are on for crohns. As Stevo commented, Remicade is widely used for fistulizing crohns. Just my opinion, Remicade would be a better choice than Humira. There are many success stories over the years about this.

I know Stevo says he did not have any luck with lidocaine, we each react differently. For your sake I hope it helps.
Posted 7/8/2018 4:02 PM (GMT 0)
I enjoy trying new medications. Following is a list of what I have taken in the past and what I am currently taking. Thank you for asking.
Prednisone 4 years
Asacol 3 years
6 MP 4 years
Menthol Trexate 3 years
Remicade 10 years
Humira 3 years
Currently stelara, past 2 years.
Posted 7/10/2018 5:10 AM (GMT 0)
On the subject of "pain" and the ER, I must be very lucky in that my ER...while won't prescribe any pain meds, is willing to give some there if I am in need of it. They all know who I am though, that I have a bad case of Crohn's and now Cancer... so I think that helps some. However, I think the entire pain thing is blown out of porportion... especially for a disease such as ours that ends up being quite painful. As a nurse in the ER who has Crohn's told me... never be afraid to ask for it when you are dealing with this disease.
Posted 7/10/2018 10:23 PM (GMT 0)
WOW dude, sorry to hear about the cancer. Was ur cancer brought on by ur CD?
How can you say “the entire pain thing is blown out of proportion” when everybody is different? Maybe ur right, we should just go with a “Darwinism” theory when it comes to humans..
Posted 7/12/2018 1:46 AM (GMT 0)
The cancer was indeed brought on by my CD. My risk was up due to me having Crohn's for 20 years, so I figured it was only a matter of time.

When I said the pain thing is being blown out of porportion, I mean it from the media's side. Everyday, there is a news article about how bad opioids are, how they are evil, all addicting, killing people, etc. I am sick of it. I am made to feel guilty for needing stronger meds to get my own pain under control, and that shouldn't be the case. I don't have a love fest with them, either, but they do help me feel better when tylenol can't touch the pain that I am dealing with right now. For that, I shouldn't be afraid of taking them due to other's having issues that can become addicting with those meds. There needs to be a happy medium.

From the media's side, most deaths are happening with illegal narcotics.... heroine mixed with fentanyl, etc. Yet, they lump it into one giant pool to make it seem like they all should be outlawed... and that to me feels like an attack on me, because I am one who actually receives relief from the medicines (legal oxycodone for normal situations, and dilaudid if I am in the hospital) and take them responsibly.

Post Edited (JakeB) : 7/11/2018 7:51:39 PM (GMT-6)

Posted 7/12/2018 5:48 AM (GMT 0)
Sorry you are made to feel this way regarding the pain relief. I am dealing with lots of pain from CD fistula and stenosis. Afraid to take any medicine since the hydrocodone slows system down and may result in a blockage.
Posted 7/17/2018 9:00 PM (GMT 0)
Very true..each person w CD has different problems. I have had CD since 1975 (43 yrs) and a Uncle had CD from his early 20's til death at 78. I have fistulas 2 times. Surgery to put in Stents(drain) and put on antibactic 1st time/ and 2nd time stents and then new Dr.put me on Remiacade. First time no problems...2nd on remaicade/predinose. I got sick from Remaicade and developed problems w RA. From my experience drain needed, but also need something for the infection caused by fistulas. Dr. did not take me off remaicade soon enough. I wish the best to all of you out there suffering from this disease that can definitely change your life...but you can change your life to make it better.
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