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Crohn's Disease Forum » Support Forum » Vent Away » The wonderful benefits of having a seton - adult discussion - possible strong languag


12-20-2015, 05:36 PM   #1
BigBoss
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The wonderful benefits of having a seton - adult discussion - possible strong languag

If you hadn't noticed the sarcasm of the title, it is just that... sarcasm. Just had to get this off my chest.
So, this is not the first fistula or seton i have had, however, it is the first time the seton was not just a knotted rubberband loop. This one instead of being knotted, is kind of like a braided pigtail with a knot. So the other one i could rotate on my own, but this one, when the braided part ended up inside the fistula and I would try to pull ut through, i just couldnt get a grip on it to pull it hard enough. So when I went to the surgeon follow up, he had to use a small pair of clamps, and it hurt like a mofo, had me break out into an immediate sweat when he pulled it through. So, the part I left out was, since he had to use clamps to pull it through, basically, he had to show my mom how to use the clamps to pull it through, because if it works its way back into the interior of the fistula, it will need to be pulled out again. And guess what, later that day, just from walking around i suppose, and not constantly sticking my hands down my pants to check this dam thing, before the day was done, it was already back to being inside again. So awesome so many joys of this disease I dont even think i can keep count. The gift that keeps on giving over and over again. I can already tell the way my luck is going.... and how much my disease absolutely loves terrorizing my body it's just a matter of time before I am going to have to have my rectum removed, I can just feel it. Maybe if I try to prepare mentally it wont be such a shock when the doctor actually tells me I am going to have to wear a bag. He had already mentioned when we were discussing the fistula before the seton, that there was a 30% chance of having that operation due to the fact that if the seton and remicade dont heal the fistula, the only way to remove it is surgically which would mean the loss of all the muscle control and incontinence. I just dont see the point anymore. I really cant take the roller coaster ride.
12-20-2015, 08:23 PM   #2
ronroush7
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Thinkl positive. You might not have to have it out.
12-20-2015, 08:35 PM   #3
kelly1
 
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Hi bigboss. I totally sympathise with you. I have had 18 operations for my fistula and have just had a seton put in last Thursday. It sounds similar to yours, it is braided with a big knot that keeps embedding in the tract and is so painful, its the worse seton ive had and will be calling my surgeon after Christmas if things dont settle down. Have you had any repair surgeries?. X
12-20-2015, 10:24 PM   #4
tots
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Make sure you always get a second opinion. No matter how much you like your Dr. Most
INs companies pay 100% for a second opinion.


Lauren
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Diagnosed= 1992 and again Feb 2012 Confirmed with
CT enterography May 2015 !!


Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
I know it's out there somewhere and I WILL find it!


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Ok, my family Dr told me to cut down on the stress- a husband, 3 kids, and 3 dogs!
12-20-2015, 11:06 PM   #5
BigBoss
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Well I had no reason to get a second opinion, my surgeon is awesome and I knew that I needed to have something done, he is the most amazing physician/surgeon/md i have ever come across and I know he has my best interest at heart, he is like my age too. He is super personable and he just lets me know everything up front so there are no surprise conversations, and these are just statistics as they are the only real data to be able to go by. We will see, I have been avouding asking my mom to fix it.
Bigboss "Hey mom do you mind pulling that rubber band knot thing out of my ass wound?" Because I absolutely love droppin my pants for my mom and having her use surgical tools to fix said problem. I would do it myself if I could, and beleive me, i spent many a night trying my hardest. To the point where I was afraid I was going to rip the rubberband.
Anyway, by the way, to answer your question, I have had a resectioning in sept of this year, i had a seton placed in the same fistula like 3 yrs ago, and I had a fitulectomy like a decade ago to fix a fistula. So they are definitely super comfy down there, like to settle in and create a whole community of them... lucky for me... also on this most recent one, there were actually 3, one got the seton, one he just cut out, and the last one he left, hoping it woulf be repaired by the remicade, but they are switching me to humira, so i dont even know. All i know is that they def like remicade better for healing fistulas and helping all the side effects of crohns like the arthritis etc. So only time will tell... yay, more waiting ... i would be the best if ever there was a game that involved waitin, the waiting game....
12-21-2015, 07:37 AM   #6
Kat123
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Hi BigBoss, I'm sorry to hear of your fistula woes. And Kelly1, sorry to hear of your ongoing problems as well - 18 procedures, just wow

Do either of you know why your surgeons have used a different type of seton this time? Maybe it would be a good idea to get it changed to a different kind BigBoss, if it is causing you so much discomfort - another procedure I know. I had a silastic rubber band seton put in this past February, and had it changed to an ethibond one in July, which is a thinner thread. My surgeon is pretty keen on that one as he says it's more comfortable and drains better as it's a braided thread so acts as a wick. I'm not sure if it's like what you have though. The knot does not go inside the fistula, but my fistula opening is now very small. I just had another procedure 10 days ago to scrape out granulation tissue from the fistula which has made the opening close up even more.

Next step to either take the seton out and pray Humira does its job or get a LIFT repair done. I don't feel particularly hopeful about either option tbh but trying to take it one step at a time. Also playing the waiting game here, and I'm not a patient person, haha. There's a reason they call us patients ;-)

BigBoss, the idea of cutting through the muscles to get rid of the fistula does sound rather drastic. In my opinion, it would be much better to live with a fistula and seton (a more comfortable one!) permanently than to go for that option. There are also the repair operations to try first which do not affect continence, though I know the success rates are not high particularly in crohn's.

You sound like you're not sure about switching to Humira? What is the reason for the change? I am on Humira weekly injections. It is my understanding that both Humira and Infliximab (Remicade) work in the same way by inhibiting TNF-alpha so I don't know why one should be more effective than the other.

Wishing you all the best x
12-21-2015, 08:46 AM   #7
BigBoss
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Hey kat, thx for the reply.

First off, the humira and remicade do worknin the same way, that they block the tnf alpha, however the way that each is derived, and i may not have this exactly right, but, basically as i understand it the remicade is more effective foe the healing properties of fistulas and the like due to its derived from rat proteins which i guess are closer in relation to human proteins, and the humira is from mouse proteins which are just a bit different. Again i am no doctor and maybe someone will chime in who knows better.

Regarding the setons and repair: i had already had a fistulectomy a decade ago where the muscle was cut, without knowing, but it was also explained to me that the other myscles would make up by overcompensati g which they did. Now for the current seton, i beleive its as you have, which is a wick style, kind of has a tennis racket shape due to the style of braid or knot, however mine does happen to find its way back around, and it is atill draining quite well, lucky me... , and the area is healing ariund the seton, which is why a clamp isneeded by a second party to "pull it through" which is a wonderful feeling of pain, similar to the pain of having something pierced without any anesthetic. Now, the only reason to have a "bag" at this point is if the fistulas do not completely heal, as they can become like a root system, branching off and forming more and more gifts of giving, so they would need to be surgically removed from a health standpiont to keep thwm in check so to speak. Also, the reason for the switch to humira is that the remicade was not helping me to feel better symptomatically, all the cramping, pain and discomfort was and is returning as it was prior to my recent resection. I am especially in pain after meals so i eat maybe once a day, although if i could get a pain management doc that actually understood and "beleived" my need for pain meds, maybe I would eat more. I have never had a blockage, and in 6 yrs of taking opiates, i have had constant diarrhea as i do still today. They are hoping the humira will work. I am down to try anything but honestly, i have a feeling my crohns just likes me more than life itself and wont be going anywhere anytime soon. If the symptoms can be controlled, I would gladly give up or wean off the opiates, but in the meantime, its pretty much suffering each day, and I live 90% of my life laying in bed. At least if I could be comfortable laying in bed it wouldnt be such a mind fuc#. When I felt better, after surgery, I immediately started to wean myself off the meds, was maybe a week from being done with them, maybe 2, and excited. I could just tell though, when everything started to return, especially cuz my level of energy and excitement drastically changed, and it was almost like a dark cloud crept back into my being or soul, after feeling such a brief feeling of warmth and sunshine. A feeling I havent felt since 2010, and was quite unfamiliar but very much welcomed. Did give me hipe for a minute, but I honestly dont know. Now that I think of it, wow, I have had about 7 or 8 procedures including surgeries with this condition. Hadnt even thought about it, and its kinda freaky. This last one was a major surgery 6hrs and included more than just resecting, a lot of repair and removal of crohns related mutations. And as you stated the alternative repair methods are low in success for crohns, especially when the crohns is extremely severe and extremely active as such in a patient like myself. I have a hard time admitting to myself that this is me, like others, i cannot see it, but i can definitely feel its effect on my 24/7, even if it isnt stomach pain, i have arthritic pain mow as well, and wven just an overall feeling like my body is never at rest, constantly at war with itself inside. Feels like its on edge if you will. But i do get relief from opiates, and it shames me to say that, but at this point i literally only have pain and discomfort to look forward to each and everyday. I hate everything about life at the moment, and the stress that my existence causes the lived ones around me.
Anyway, hope that all makes sense. Thanks for your thoughts, I appreciate your comments.
Wishing you well too!
12-21-2015, 09:18 AM   #8
Kat123
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Hi BigBoss,

Wow, you are having a very hard time right now, I am sorry. I can totally understand your feelings when you are in so much pain you are dependent on pain meds, which obviously you would get off if you could.

It must be so depressing that your pain has returned after your recent resection. I am sorry you had such a brief period of relief. I hope that the switch to Humira could help you. It's actually the Infliximab/Remicade that is the human/mouse combination, and Humira is fully human in origin. There are other drugs to try also, like Vedolizumab which has a different mode of action to the anti-TNFs.

Since you are especially in pain after you eat, have you tried any dietary treatments like EEN (exclusive enteral nutrition)? I wonder if that could bring you some relief from symptoms, and even help with inducing remission. I'm sorry if I'm suggesting things you've already tried.

Yes, the seton does sound similar in its set-up to mine. Mine has two knots so is that tennis-racket shape as well. Could you do something like tape the ends to your skin outside to prevent the knot from travelling up inside you? I've never tried this, just a (possibly crazy) idea.

I understand what you are saying about the fistulas becoming more invasive and needing to be addressed to prevent further damage. I hope that you can find the right drug to get them under control before needing more surgery xx
12-23-2015, 08:56 AM   #9
BigBoss
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Def would get off them if I could, but at the same time, food is the equivalent of boiling acid and razor blades, especially on evaquation... makes me think im crazy or its somehow in my head, so i find myself constsntly searching andnlooking for people who as well benefit from the use of opiates, especially when the crohn's and symptoms are out of control.

I had never heard of een, and when googling it, it seems it ismore common for children, but is frequently used with adults more so in japan. If it is more like using ensure or boost and the like, then I wouldnt be able to handle that kind of diet very well, thise types of shakes give me tones of gas and bloating, and follows with D. I could possibly do smoothies, but, wouldhave to skin some fruits and it piss me off to have to avoid fruits like strawberries, rasberries [my fav], and the like. It already frustrates me not being able to have kiwi, rasberries all my fav fruits and vegetables.

Your idea is not crazy by the way, as I myself had that very same idea, only problem or reason for not doing the tape, just wouldget messy/nasty. A] it drains a lot, and B] I could see possible issues during bowel movements. But I rwally doappreciate the thoughts/ideas. Had to have my mom donthe dirty deed last night, and OH MAN, was it extremely painful. Broke me intonan immediate sweat, my heart rate was elevated. Effing A .... I am glad she did it though, as having that oart of tge seton in the tract def obstructs the more "chunky" stuff from properly draining. Sorry bout that. It drains fine either way, believe me, it is constantly leaving my boxers wet, crusty, and chafes my rear end.

The one thing that kind of seems to help is my G.I. finally realizes how much the meds benefit me, and that when I was feeling "normal" or better, I was eagerly weaning off the opiates. I know there are more understanding and helpful pain docs out therr, I was really just hoping I wan't going to have to go around interviewing dr after dr to find that "one". Wish my body just wasn't all fudged up all the time. Its physically and mentally draining. Plus I never thought, growing up, that I could or anyone for that matter could, feel so alone, ir feel so isolated. And Im not saying I havent isolated myself to a degree as well, but just in general it is quite depressing. I don't have energy to do much, but I need to start forcing myself to start working on my cars more. Having sufficient pain meds helps me to be more productive and get out of my head.

Anyway, if I dont stop myself now, ill just go on a rant. So ill stop here. But I really want to thank you for all the helpful suggestions, I do appreciate them. I begin humira on Thursday, so hpefully that will work, fingers crossed.

One last thing ... my mri came back clear, mostly, so I don't get why I am having so much pain & discomfort, and when I ask my dr, she doesnt really have an explannation, just makes me think that there is still so much unknown about this disease. Why do I still feel like I have some kind of disease that is slowly killing me from the inside out.

Ok im stopping lol. Hope u are well and able to enjoy the holidays. Wishing u all the best.
12-23-2015, 09:38 AM   #10
Kat123
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Yes, the EEN is used more commonly for children, but it is supposed to be effective in adults as well. I've never used them, but yes I hear they can cause gas and D, especially the elemental kind vs. the whole protein kinds because of the small solute particles - so you need to dilute them with more water to reduce the osmotic pressure. The idea is that you go on the EEN exclusively for a period of (3-6?)weeks and give up eating, so it wouldn't work to make your own shakes as they wouldn't be nutritionally complete. After that period, you reintroduce foods slowly to see what you can tolerate. It needs to be done under the supervision of your GI and a dietitian. There's an EEN section on the forum if you want to get views of people who are actually on it.

Of course, you are starting Humira soon, so hopefully that will have a good effect for you. Good luck for Thursday. Let me know how it goes. Will the nurse come to your house to teach you how to inject them? Are you getting the pens or syringes?

Obviously if you put tape on your bum it will get messy, but you can remove it in the shower after a BM. I use several different kinds of dressings on mine. At the moment using some non-woven surgical swabs (softer than gauze) taped on the fistula opening, with one folded inside my bum cheeks too. I also have adhesive dressings - mepore and opsite are the kinds I use. I use cavillon barrier cream around the area to prevent chaffing from the drainage. Despite all that, it still sometimes gets on my underwear, so I know where you're coming from!

I'm sorry you are feeling isolated and lonely. Please give me a shout if you'd like to chat any time I can appreciate how hard it must be when you can't get out and I guess friends stop coming round after a while as they don't know what to say or how to help. If you can try to be more active to the extent you are able, I'm sure that would help - just to feel a bit more 'normal'. Is it sunny where you are right now? It's so dreary and dark here

What was the MRI of? Your fistula or bowel? I don't know much about it but I'm not sure everthing could be seen on the MRI, so possible you have stuff going on that's not visible on the scan.

Thanks for the holiday wishes, and happy Christmas to you too!
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