Newbie Seton Stitch Advice

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hulahoops1974
New Member


Date Joined Sep 2018
Total Posts : 9
   Posted 9/4/2018 2:53 AM (GMT -6)   
Hi there,

On 06/08/18 I had emergency surgery to drain a perianal abscess. A 10 minute surgery turned into 4hrs as the abscess was a fair size and entwined around my sphincter. I was discharged and then had another surgery on the 13/08/18 to further drain the abscess. On 23/08/18 they then decided it was time to place a seton stitch as the puss was getting blocked and the consultant thinks other fistulas were forming.

So it's now 10 days since my last surgery. After each one I had terrible painful constipation. The worse after the seton stitch placement. I am taking lactulose twice a day. I feel like I am moving my bowels often (10 times a day), but that there is always a constant pressure that they are not empty! I'm finding this really draining and exhausting. Is this feeling of constant pressure common?

There is swelling around my anus which is making it difficult to move around and sit in anyway which is comfortable. It is particularly sore and tender where I can feel the seton stitch. Again is this common and just a case of being patient?

I have developed really sore lower back pain over the past few days. I'm not sure is this is just because my body is out of alignment due to the pain moving and sitting or if there is something else I should be worried about.

I have an appointment with my gp today to see if they can assist me in anyway.

I am having regular sea salt baths,
Taking lactulose
Using coconut oil to soothe the pain and inflammation
Eating well and keeping hydrated.

I'm avoiding taking pain relief as I was given cocodamol and codeine. I really want to avoid constipation!

My questions

Is it normal to feel so sore and swollen at this stage? I feel like I have a bunch of grapes between my butt cheeks.
Is it common to develop lower back pain?
Is it common to have this feeling of constant pressure that you always need to move your bowels?
Should I still feel so tired and drained. I am a very active person normally and I just have no get up and go.
I am sweating frequently at night where I have to completely change. Is this common? I have no temperature.
This morning I am finding it difficult hold myself up straight due to pain in my lower back and the pressure I feeling to move my bowels.

Any help or advice gratefully received.

Thanks

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16804
   Posted 9/4/2018 6:14 AM (GMT -6)   
Hi Hulahoop & welcome to the forum. I have no experience with the issues you are having. You have had a lot of work done in a short amount of time which could explain some of your problems. Have you contacted the surgeon about this? When is your follow up appt.

I hope your GP can help you, but this is likely out of out his/her realm of practice. If nothing else perhaps your GP can contact the surgeon on your behalf. The questions you are asking needs to be answered by your dr, so please ask them.

Please let us know what the dr tells you today.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Dimitri71
Regular Member


Date Joined Jul 2017
Total Posts : 158
   Posted 9/4/2018 6:28 AM (GMT -6)   
Hi Hulahoops and sorry to hear about your troubles.
The symptoms you're describing are quite intense.
I have no real value to add here, as I have not had these type of intense symptoms. Moving bowels and not feeling empty is a symptom of fistulas however - but 10 times is a lot; Have you had any blood tests?
Constipation is also typical post surgery due to all the medicine. Are you also taking antibiotics? Usually symptoms tend to subside 1-2 weeks post surgery.
Visiting a good CRS would be key to getting some answers.
Sending my support.

Post Edited (Dimitri71) : 9/4/2018 5:31:02 AM (GMT-6)


hulahoops1974
New Member


Date Joined Sep 2018
Total Posts : 9
   Posted 9/4/2018 6:29 AM (GMT -6)   
Hi there,

Thank you for your response. I saw the surgeon last Monday (27th) and I was in so much pain. She had a look and said everything was as it should be and said go home and rest.

I phoned today and spoke to her secretary. Both the consultants who performed my surgery are on holiday until Monday. She advised me to see the gp and he could decide if I need to see another consultant at the hospital today.

My follow up appointment with them is in October (NHS, I'm in the UK) and my husband has just made a private appointment for me to see the same consultant this Friday.

Thanks

Dimitri71
Regular Member


Date Joined Jul 2017
Total Posts : 158
   Posted 9/4/2018 6:34 AM (GMT -6)   
Hi Hula, The soreness will gradually go away. It takes a full good month to really get used to the seton.
Good that you have made a new appointment.
As long as you don't have a fever or an abscess forming, it should be ok.
Perianal Fistula since 06/2017. Draining seton and two FiLac surgeries (last in February 2018). Cutting Seton 5/2018 which closed the Fistula on 6/2018. Available to answer anything that will help others struggling with perianal fistulas.

hulahoops1974
New Member


Date Joined Sep 2018
Total Posts : 9
   Posted 9/4/2018 6:34 AM (GMT -6)   
Last bloods were taken on the 19th and my crp was 6 (it was over 500 when I was first admitted on the 6th)
I need to visit the gp to get a new sick line, lactulose and discuss pain relief so it won't be a wasted visit.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16804
   Posted 9/5/2018 5:53 AM (GMT -6)   
Hulahoop how did the appt go with your GP?
Susie
Moderator in Chronic Pain & Psoriasis Forums

hulahoops1974
New Member


Date Joined Sep 2018
Total Posts : 9
   Posted 9/5/2018 6:07 AM (GMT -6)   
Hi there,

He gave me different anti inflammatories to try, more lactulose and signed me off work for another 4 weeks :-(
I'm not in as much discomfort today. Reading the comments from other members has helped to ease my mind a little. Thank you for taking the time to reply to my post.

I will go armed with a long list of questions for my consultant on Friday.

Thanks

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16804
   Posted 9/5/2018 9:54 AM (GMT -6)   
Hulahoop, glad that your appt went well with the dr.. Great on making your list of questions for specialist too. I hope each day gets a little better for you. Your surgery was a lot & in a delicate area, jeesh.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

dbrookenz
Regular Member


Date Joined Feb 2017
Total Posts : 74
   Posted 9/8/2018 5:43 PM (GMT -6)   
Hey hulahoops 1974,

I'm sorry to read about your recent experiences. It sounds rough. I took a lot of comfort in reading messages on here from people in the same boat, so I'll share my experience with you in the hope it has the same effect.

Firstly, even though fistula means the same thing, it does not mean everyone's experience of it is the same. Some people get barely any pain and the only thing they put up with is a bit of drainage, while others (like myself) experience medium to high levels of pain, especially post bowel movement. My theory is that this is due to the fistula locations, and nerve endings involved. Nerves inside the anus are very sensitive. It also depends on what the inflammation is like. Since your abscess drainage wasn't long ago, it's likely still very inflamed. Unfortunately this area takes a long time to heal and get back to normal. I experience similar symptoms to yours post first drainage. Felt like I was sitting on a golf ball, and I looked sickly and felt awful for a couple of months afterwards. Luckily it DOES lessen, and get better. Please remember that. It just takes time.

I currently have a draining seton. I got one after my initial drainage about 10 months ago but I found the pain almost unbearable and it fell out after 2 weeks. I think my body was done with it! This second try at a draining seton has been much better. I still get pain post bowel movement, and a little bit of drainage but it's mild most of the time. Having the seton does make me feel like I'm ever so slightly always on the verge of needing to empty my bowels. I put this down to having a foreign object inside your anus. Once your body adapts to this feeling it will lessen a lot, even go away.

Just remember, the draining seton is there to mature the fistula track, lessen inflammation and stop any new abscess from forming. It is not a cure for fistula, but it's there to calm it down to a level where they can perform a follow up operation to finally get rid of it.

Also, one huge thing I've found during this experience is how much your overall health is effected by problems in the bowel or rectum. My specialist said we take that area for granted when it's working properly but it's so essential to our general well being. If something is not right down there then it can make us feel awful everywhere else. Skin problems, general unease, slight fevers etc. It's all related.

I'm having an endorectal flap (advancement flap) operation performed in two weeks. My specialist said that everything looks in the right place for him to do it. Since I don't smoke, nor have chrons, the success rate for my operation is relatively high, around 70%. If it doesn't work this time, they can try again down the track. Those odds are great to anyone with a fistula as it's a notoriously difficult thing to fix.

Once again, keep positive, if you're in pain then don't hesitate to see someone. All this WILL get better and it WILL be fixed sooner or later. I see Dimitri on this thread, he & I got our fistula at roughly the same time and went through lots of ups and downs. He finally got rid of his not long ago.

Hope all this helps. If you need to ask me anything then please feel free smile

hulahoops1974
New Member


Date Joined Sep 2018
Total Posts : 9
   Posted 9/9/2018 11:50 AM (GMT -6)   
Hi,

Thanks so much for taking the time to send me a message I really appreciate it. I saw my consultant on Friday. He examined me and discovered that the seton drain had cut through. I assuming by cut through he meant snapped? He is arranging an MRI scan for early next week where they will try to establish if any other fistulas have formed. He will then make a plan to reinsert one or more seton drains later in the week.

After each of the three surgeries so far I have had terrible constipation. I'm wondering if the straining (it felt like I was pooing a baby!!) is what caused the seton thread to snap. My concern is that the same thing will happen again. I'm keeping up the laxatives and staying away from pain killers where possible. I will ask him about this when I see him.

Thanks

Dimitri71
Regular Member


Date Joined Jul 2017
Total Posts : 158
   Posted 9/10/2018 2:11 AM (GMT -6)   
Hi Hulahoops,
I hope things get better for you.
Is there a possibility that your CRS intentionally placed a cutting seton and the intention was indeed to cut through?
All the best & keep us posted.

hulahoops1974
New Member


Date Joined Sep 2018
Total Posts : 9
   Posted 9/10/2018 2:21 AM (GMT -6)   
Hi there,

I really don’t know. During the consultation before he examined me we were discussing things assuming the seton was still in place. After the examination things moved very fast as he was deciding what to do next. The next thing I was heading back home with another list of questions forming in my mind.

I try and find pot.

Dimitri71
Regular Member


Date Joined Jul 2017
Total Posts : 158
   Posted 9/10/2018 7:14 AM (GMT -6)   
Just don't get dissapointed and never give up. It's fixable!
Perianal Fistula since 06/2017. Draining seton and two FiLac surgeries (last in February 2018). Cutting Seton 5/2018 which closed the Fistula on 6/2018. Available to answer anything that will help others struggling with perianal fistulas.

hulahoops1974
New Member


Date Joined Sep 2018
Total Posts : 9
   Posted 9/14/2018 9:09 AM (GMT -6)   
Hi there,

I had the MRI scan on Wednesday and have been booked in for surgery on Tuesday. I don't have the results of the MRI scan yet. I'm therefore not exactly sure what they plan to do during the procedure.

I'm hoping it will give me some relief this time around as I'm in a lot of discomfort at the moment.

dbrookenz I hope your procedure goes well.

Dimitri71
Regular Member


Date Joined Jul 2017
Total Posts : 158
   Posted 9/17/2018 1:15 PM (GMT -6)   
Crossing my fingers Hulahoops.
I am sure you'll wake up with some better news.
All the best.

Post Edited (Dimitri71) : 9/17/2018 12:20:58 PM (GMT-6)


hulahoops1974
New Member


Date Joined Sep 2018
Total Posts : 9
   Posted 9/21/2018 9:13 AM (GMT -6)   
Hi there,

The MRI scan showed that the abscess was still present between my inner and outer sphincter and that it had tracked in multiple directions, but did not show those paths clearly.

I was admitted on Tuesday and given a bowel prep as they decided to perform colonoscopy during surgery to rule out crohns higher up in my bowel.

During the surgery on Wednesday they inserted two seton drains. The 1st to replace the original seton which had cut through, but was still inside me partially doing it's job. They made a small incision and inserted another seton drain to the right of the 1st one.

The colonoscopy and previous biophys confirmed I do not have crohns (I know the beast my husband suffers)

I'm back home now and hopeful for the future. I'm weak and sore form surgery, but overall feeling much better for having all the horrible puss drained away.

Hopefully this is the start of my journey to recovery.

Thanks for getting in touch and offering support, encouragement and sharing your experiences.

dbrookenz I hope your procedure went well.

Dimitri71
Regular Member


Date Joined Jul 2017
Total Posts : 158
   Posted 9/22/2018 1:36 AM (GMT -6)   
Hi Hulahoops, good to have this under control with a new plan. You are indeed on your way to recovery. Do you know what the next steps in the process are?
Perianal Fistula since 06/2017. Draining seton and two FiLac surgeries (last in February 2018). Cutting Seton 5/2018 which closed the Fistula on 6/2018. Available to answer anything that will help others struggling with perianal fistulas.

dbrookenz
Regular Member


Date Joined Feb 2017
Total Posts : 74
   Posted 9/22/2018 4:45 PM (GMT -6)   
Hey hulahoops 1974,

That's awesome news! Having the tracks and opening identified is the first step, the next big step is the setons which you now have. They will help keep things draining and mature the tracks so they are ready for the next, and hopefully final procedure. I dreaded the seton but it's an important part of the process. You're part way there now. Don't worry if it takes a few weeks for your body to adapt to the setons, once it does they make things a lot more bearable down there!

My surgery went well as far as I can tell. the surgeon took out my seton, performed an advancement flap to cover the internal opening, cleaned out the track and then insert a malecot drain at the external opening of the fistula. This will stay in for two weeks and help the remaining cavity drain. He said he prefers this to daily packing (the old school method). All in all, the op went well and it's now just wait and see. Like you I don't have chrons, so our success rates are higher, but fistula are tricky. Luckily we have other options if things don't work first time around.

Keep us up to date with how things are going!

hulahoops1974
New Member


Date Joined Sep 2018
Total Posts : 9
   Posted Yesterday 9:03 AM (GMT -6)   
Fingers crossed that your procedure is successful dbrookenz. It certainly sounds like it will be.

I'm finding that I'm coping just fine with the setons. I can now sit flat on my bottom which I haven't been able to do since the end of July.

I have an appointment with my surgeon on the 2nd of October. I'm not sure what the time frame will be, but I'm happy just to be feeling a bit more like myself smile
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