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Anyone with setons! Please help. I feel completely alone in this

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Posted 3/24/2017 1:26 PM (GMT 0)
2 setons placed 16 days ago. Both from rectum to either side of anus, tied in the middle. From day 5 the drainage was significantly reduced. By day 7 a tiny, tiny amount. I'm not wearing pads or gauze or anything. This week there's no drainage at all. Last Saturday I had insane rectal pain. By Tues it had passed. Then yesterday it came back again.

My surgeon has been out of the country since. My GI cannot answer my questions or explain if this pain is normal or if not draining is normal.

Just woke and my overall pain is reduced. However i noticed I cannot put pressure on my left inner butt cheek. I felt it and the fistula tract is very swollen, like it was before setons were placed when I was abscessing.

Is it possible that I'm abscessing higher up and it takes weeks for it to make it's way down the tract to exit?

Why is this happening? I thought having the setons would eliminate the swollen tract. I'm so fed up. Why is it so swollen again?

I'd say I woke up "damp" today but no drainage....yet??
Posted 3/25/2017 12:02 AM (GMT 0)
I had a seton placed recently and I was surprised how small the fistula tract was. Last time I had a fistula 6 years ago, it was much larger. Fast forward and my butt was still inflamed. They didn't place the seton correctly, they inadvertently didn't include the entire tract. I'd check with followup care if you're still swollen sometimes they can't find the entire tract initially.
Posted 3/25/2017 5:15 AM (GMT 0)
Thank you. I've been in ER for 12 hrs. now trying to sort this out. Your explanation wouldn't surprise me. It's in the same tract.

I can't believe I'm going through this again.
Posted 3/25/2017 1:56 PM (GMT 0)
How you doing, girl?
Did they figure anything out?
I've never had setons myself, but looking back I'm surprised why they never made me have one.
Posted 3/26/2017 12:03 AM (GMT 0)
They did another I & D. Exactly what setons were supposed to stop. I think this is my 6th & no doubt in 2 weeks I'll abscess again.

I guess I'm the only one on the forum with setons because my questions go unanswered. Wasn't wrong about being alone in this.
Posted 3/26/2017 2:46 AM (GMT 0)
UB,

Gosh....I am so sorry you are going thru this. I haven't had any personal experiences with setons. Fistulas yes....setons no... I pray everyday that I don't have to go thru more fistulas or any setons. They sound challenging.

Are you feeling any better?

Was this a new or existing area? What did they say???

My thoughts are with you. Hang in there!
Clo
Posted 3/26/2017 3:04 AM (GMT 0)
Honest to goodness Clo if I told you how I was truly feeling I'd get band for life from this forum.

I'm still in hospital & I don't understand anything about what happened. I was abscessing in the same tract where they placed setons 17 days ago. The thought was that the fistula branched out & surgeon was sopposed to put seton through the branch rather than add a 3rd one. All I know is that I have the 2 original setons but now have a separate hole coming from my butt which is just bleeding. I don't know what this means. I don't know if I'll start pooping from Thalia new hole. But of course I'll bet that I will abscess again because I have the worst luck ever. I must have done something really wrong in my past life to be punished like this. So 2 setons & now a hole. I've severely limited food intake save bag of chips because pooping is exceruciating with setons. The only thing that was getting me through was that I had tickets to ballet tomorrow with my mom. Obviously it was the perfect time to abscesss again so that's a loss. I don't even know why I bothered to look forward to that or even bother with dreams anymore.
Posted 3/26/2017 5:46 AM (GMT 0)
Oh UB,

That's awful!!! It sounds like they admitted you.... Will they give you any pain meds?

What helped me...it hurt so good. ..was this bottle with warm antibacterial stuff in it. It had a very pointy top. They would squeeze it into my "tracts" to clean them out. Then they would sorta knead the area until whatever was in there came out... Hurt so good....then I would get a pain pill...

I too have fistulas. I keep telling my sister I am like one of those darn sprinklers.....only I don't spray water.....Lol.... They just pop up one day and mine sometime close on their own within a week or so. ... Painful... My RVF is my worse. I will go in June for a "lookey loo" so they can decide if anything can be done.

One time I had these huge red egg size bumps on each butt cheek and one in my vagina. That was a painful time...plus I ended up septic. Nasty nasty stuff. So glad you are where they can watch out for you.

I am sorry you are going to miss your ballet with your Mom. I know that she just wants you to get better.

I am sending lots of healing thoughts and hugs your way.

Please let me know how you are doing.

Clo
Posted 3/26/2017 6:22 AM (GMT 0)
Yes they admitted me to drain abscess. I don't understand why the need to punch a hole in my butt. I can't take abx & am at risk for PG. in addition no one can say why I'm in seton agony. Now another butt agony. Im on pain meds. Not touching it anymore. Hence pacing the halls at 2am and talking with you; the best part. I will mention cleaning with antibacterial stuff. Any idea as to the name? Did they put it up inside the tract? I'm
Trying to figure out how not to get stool on it as I'm sure that will keep the infection alive. Was just looking at Manuka honey wound care. So expensive!! But I can see this hospital already discharging me tomorrow that I'll have to figure this out myself

Woukd getting rectum removed heal RVF?

Best progress I made was on hyperbaric..:.and now it makes more sense with setons in but I've been in too much pain & clinic booked until May. Still doesn't answer why I'm still abscessing when setons are supposed to prevent this. Perhaps it would heal your RVF.

Regarding other thread ; I curious as to what kind of chips you like. Up until now only available in England was Walkers Cheese & Onionsmile

Post Edited (U B Tough) : 3/26/2017 5:15:33 AM (GMT-6)

Posted 3/26/2017 1:14 PM (GMT 0)
Gosh UB tough I just wish someone could get this figured out for you.

Two things, have you heard of Medihoney gel? That is what they had me use on my rectal wound after surgery when it wouldn't heal. My hospital pharmacy sells it. In the US I paid $15 for a small tube but you only need a tiny dot so that one tube lasted forever. My brother works in medical supply for wound care and that is one of thE most recommended products by the wound clinics. there is also one called Manukamed gel I think? But I haven't used that one.

As far as removing your rectum healing your rvf, I'm not sure. In my case it did, but I don't even think my CR surgeon was sure until he was in there. I was having my rectum removed regardless not solely to heal my RVF. In my case when he removed my rectum he was able to surgically close the hole left in my vagina. I'm 13 months post op and it is still closed and I haven't had any issues. My obgyn at my last exam thinks with the source of inflammation removed removed and the way it healed it shouldn't reopen.
Posted 3/26/2017 3:12 PM (GMT 0)
Thanks cup cakes. I was asking Clo is she woukd remove hers since it's so painful. I wouldn't see how'd there be a connection with its gone

You wouldn't believe what this hospital is telling me now. I'm getting screwed by the doctors who are lying to me & by this disease. Imagine reporting on a surgery that you weren't in & telling me the complete opposite to what CT scan said. Waiting for confirmation before I blow my stack. This has been going on since July & im tired of fighting. I'm heartbroken & sad.

Post Edited (U B Tough) : 3/26/2017 9:24:23 AM (GMT-6)

Posted 3/26/2017 4:20 PM (GMT 0)
Hey ÜB,
What you have been going through is incredibly intense. Is there someone with you to help cushion the frustration of hospital? Once you get to the point of exploding, it is a sign that you are beyond overloaded. It makes healing so hard. You need to step back.... and try to get some rest.

Years ago they laid my fistula open (no seton) surgically, and it healed. I don't think they do that now. But there is still hope things will improve.
Please take care and let the whole thing go for a while. You are exhausted on all levels.
Posted 3/26/2017 4:25 PM (GMT 0)
Maybe they could put you on TPN for a while, to rest the bowel?
Posted 3/26/2017 5:45 PM (GMT 0)
No I'm by myself. Unless you have fistulating CD no one can understand it anyway. Essentially by cutting a hole in my ass they've set me up for further infection. If it's true that this is a new abscess I'll be here for another drainage in as little as a week.. .

I'm still waiting confirmation & to actually see my surgeon. I want them to remove the infected crypt. Otherwise I still stand no chance. I have no reason to TPN as bowel is 0-3. Although I've just reduced Humira so who knows.
Update: it's a new abscess.

Post Edited (U B Tough) : 3/26/2017 1:36:30 PM (GMT-6)

Posted 3/26/2017 8:58 PM (GMT 0)
Oh no. I am so sorry to hear this. I wish you would start seeing drastic improvement very quickly.
Posted 3/26/2017 9:58 PM (GMT 0)

cupcakespinkgal said...
Gosh UB tough I just wish someone could get this figured out for you.

Two things, have you heard of Medihoney gel? That is what they had me use on my rectal wound after surgery when it wouldn't heal. My hospital pharmacy sells it. In the US I paid $15 for a small tube but you only need a tiny dot so that one tube lasted forever. My brother works in medical supply for wound care and that is one of thE most recommended products by the wound clinics. there is also one called Manukamed gel I think? But I haven't used that one. Quote]

Yes was looking at medi honey earlier but the pads. The latest hole is millimeters away from anus. Barely that! gel would obviously be too sticky & I thought a pad could protect it from wiping. I've thought of covering inner butt cheeks every night to prevent other abscesses from forming. Just my luck after all these months I get setons placed & i abscess elsewhere.

Regarding my RVF. No stool "just gas" but since setons vulvodynia has been reduced. That's something

Thank you for your kindness.

Posted 3/27/2017 3:45 AM (GMT 0)
UB,

Sorry.....it is my methotrexate day. I was puking and praying. ...when I wasn't running to the freezer for more ice to put on my head. But it helpsmore than it hurts so I will just deal with it.

New abscess..darn. Are they keeping you? Or did they send you home ? Are there new tracks or did they check yet?

The antibiotics in the bottle of warm water....unsure what it was. They continued to clean the tracks with that pointy bottle even without the antibiotics. They recommended that I use an antibacterial soap or alittle honey in the water to try to keep it clean and help it heal. (Once I went home) It really did hurt while I was doing it but I obtained some relief. They also packed them at one time. Thankfully I didn't have to continue that.

We were so desperate - I am allergic to IV flagyl-made my throat swell could not breath- we even did flagyl in the pill form. I was able to tolerate that for 10 days but then had to stop. So we moved to cipro-allergic to that also-and with lots of benedryl and steroids I was able to take that for another 10 days.

I hate having severe fistulizing Crohns. I don't know if its more painful than regular Crohns but I sorta think it is. Its traumatic to watch those red bumps appear (abscesses) and you know what follows....and everyone is saying don't stress out. I wanted to make them sit in a chair and watch the darn fistula tracks develop....and then watch the hole open up. Sorry....need some anger management right now just thinking about it. Then the fun rreally starts I had mucus and alittle blood at first and once it got primed it turned into a fire hose....then shutting it down...the pressure...daily cleaning rituals.... Sorry.... I am not helping I know. I am just trying to tell you that I really do understand. More importantly. . I wish you did not have to go thru this.

On the up side....once we got my methotrexate level up and zeroed out my Remicade antibodies while rising my Remicade trough levels the abscesses and fistulas started healing. It wasn't easy. It hurt alittle less every day...but eventually the uveitis, skin boils, eczema, abscesses and fistulas started to heal. Its 7 months post colostomy and while things went crazy until January or so of this year...now they are much better. I believe it is finding the right combination of meds. The RVF....its still there...still bad....and will have to be dealt with once I am more stable.

So hang in there.....

I wish I could just give you a real hug.....

Clo
Posted 3/27/2017 10:44 AM (GMT 0)
Hey Clo, you should really ask about doing the injectable Methotrexate. One reason it is used more is some side effects like the GI upset are less.

When my GI first mentioned doing the syringe I asked why not the pills seems easier but she said her patients tolerate the injectable so much better. She was right, most issues I had was fatigue. Also are you taking folate?
Posted 3/27/2017 6:24 PM (GMT 0)
Thank you. Clo. I'm sorry you're still suffering. Seems like without a colon you wouldn't. I don't understand. I'll mention meth.

Still in hospital. Excruciating pain. Haven't seen a doc. No one seems to want to find a solution. I have real anticipatory fear that I'll abscess again. It's traumatic. Having read about ostomy & fistulas it doesn't seem like an Option at all.

Have you thought of Map study? Contacted Dr Borody?

Yes a real hug would be appreciated & returned.
Posted 3/30/2017 2:43 AM (GMT 0)
UB,

I did speak with William Chamberlin regarding MAP..he is now in New Mexico. Unfortunately I am allergic to so many antibiotics they decided that the antibiotic option was not for me. Then I developed sepsis & they said Remicade was the way to go. I too think it is unfair to still have issues when you have had a colostomy....However now things are better....so I am just grateful. Its those extra treats that sorts sneak up and bite you in the....well you know...

The Ostomy and fistulizing Crohns actually worked out....so far..knock on wood... I still go a bunch of times but wearing a bag makes it more manageable. The only skin issues I have are boils, eeczema and sun allergy.....so maybe that makes a difference.

I honestly believe that if we can get this under control I will be ok. Its just hard finding something to work, and when you find something that is helping do you risk having more issues pop up if you play with the amount, timing or even generic vs. original... So challenging.

I feel for you. It makes me want to go to Canada just to hold your hand.... And I too think it is difficult for anyone to really understand Crohns. (Sometimes even the nurses don't seem to get it)


Cupcakespinkgal:

I will have to ask my doctor about that again...
Do you go in to get them or do you give them to yourself?

I am on foliate...well folic acid..

I was on methotrexate IV and the pills for awhile.....now just the pills. I am wimpy about needles. When I see one the world shifts then spins, I get a hot flash, terribly nauseous and I either start puking or I pass out. Even when I think a needle is pointed in my direction my body just spazzes out. I begged them to put my port in my back so I couldn't see....Lol... but alas...my port was put in where they are supposed to go..And yes....infusion days are special treats for my poor infusion nurses.

UB...
Hang in there...

Clo

Post Edited (clo2014) : 3/29/2017 8:59:05 PM (GMT-6)

Posted 3/30/2017 1:05 PM (GMT 0)
Clo- it is a tiny needle. My script was for the tiniest insulin needles which really helped. I couldn't feel it. I was nervous about it but it was really easy after the nurse showed me how. Did the first one with the nurse then did them at home. My hubs also could do them if I couldn't handle injecting myself.

Clo and UB I really don't understand why Crohn's patients get colostomies. So much can still happen when part of the colon was left. I guess for some it is the hope to be reconnected? Which I still don't get since it's likely to attack the colon again. I felt better with my first temp ostomy but still had some issues like boils, anemia, and fatigue. When they took my whole colon out those all disappeared. I haven't had a single boil since my last surgery. I don't really understand if someone's Crohn's is predominately in the colon why any would be left.

I feel for you Clo because it sounds like you still have a lot
Going on. Are they hoping to reconnect you?
Posted 3/30/2017 6:03 PM (GMT 0)
Cupcake,

According to my doctors...they left as much colon as possible because Crohns can attack anywhere and they are hoping that if we do the colostomy now (1) we may be able to reconnect and (2) we may need to do additional colos or ileos in the future so they are trying to save as much as possible to have more to work with. I do not know if this is the same with everyone...or if all doctors do this or if they only do this with fistulizing Crohns or what. They just said that since I didn't have any symptoms and suddenly there was a sudden onset of very severe symptoms we should be very cautious. They were hoping with the colostomy I would go in remission. I don't think I am there yet...😕. But I am always hopeful and grateful for each improvement and every day I get to hang around. Lol.

I don't know if I could give myself a shot. I see a needle and that's it. I can not control it. I just pitch forward and do a faceplant. It happens in seconds. Lol. I have a diabetic friend. She gave herself a shot, I happened to look over and the next thing I knew she was waking me up....Lol.. And that was pre Crohns. After Crohns my doctors and nurses would tease me cause when they came in with a needle...well I had to be laying down. ...

UB,
How are you?
Clo
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