crohns/colitis/lupus/hyperthyroidism-seton fistula pentasa cipro flagyl vicodin
Hi Frogelita, I just want you to know I understand how horrible it all is. When I had my tube drain inserted it was the result of the seton not working properly, there was excess sepsis, so I was intense pain, and the pain went on for months. My seton recovery was not as everyone says (10 days) – it was months before I was anywhere near pain free. I remember when my ‘tube’ was 1st put in, I couldn’t bear the thought of it being there, and just wanted to know when it was coming out!! But it will do its job, its just taking its darn time, which is frustrating as all hell, I know ….. I was working while this all happened, at a new job and so anxious to make a good impression…. But trust me, this is just a moment in time and things will get better before you know it, the pain will get better, we just take so long to heal down there.
One thing I did notice and which rings a bell with your story is the pain meds. I finally got some decent, prescription meds, and straight after I took them I’d feel great, but the next day if I didn’t take them I’d have a ‘come down’ and be so weepy and depressed and – as you said – even suicidal. It was scary. I decided in my case to stop taking the pain meds because the way they were affecting my mental condition was too scary for words. My uncle died of suicide and I have been depressed in the past and I could tell they were affecting me.
I know how awkward the stitches are and how frustrating it is to have this foreign thing in your butt, poking you, draining, hurting, not letting you sit properly….. Its awful. Just try to think that it will help the abscess to heal and it is well worth it in the end. Please believe me. My tube drain has been in for nearly 3 months now and will come out when I have my 1st remicade infusion. I have become quite used to it being there now (even though I try to avoid looking at it because I get depressed, there’s an ever-expanding fistula hole there too and it scares me). The stitches didn’t take very long to dissolve (just a couple of weeks) and once they’re gone it’s a lot more comfortable because it doesn’t ‘pull’ your poor skin so badly, but still manages to stay in place.
Hery frogerlita I know it’s not what you want to hear right now because you are waiting a few weeks for Remicade, but you are lucky it only takes that long!!! I have had to wait over three months just to apply!! Over here in Australia it is very rare and you have to apply via the pharmaceutical benefits scheme, so even though I had a deep abscess, and severe Crohn’s, I have had to wait twelve weeks and then I have to re-apply every 3 months!! It has been tough. At least you didn’t have to wait that long….. I am still waiting, three months on. And I still have a seton and a mushroom drain in my butt. I’ve been told things won’t really heal up until I have the remicade so that was hard news to take. My fistula is still getting bigger by the day even though the seton is in there.
I did have a seton initially, and it was bright red – actually I had two, but one was there to lay the area open and came out later. I still have one fire-engine red seton, but I also had to have a mushroom drain inserted because it was a deep abscess which kept on growing even after my first setons were put in and I had more and more pain following surgery. I’ve also gone about 4 years with little or no medication, so I am worried about the area too. My advice would be try not to freak out, I know it’s hard because I’ve been there (well, I’m still there) – waiting etc….. But at least it’s a matter of weeks for you and not months! Hopefully you get your answers soon….. and the connection between our nervous systems and our stomachs is very strong…. Stress will only exacerbate things…. try to just remember this is momentary and you don’t have a long time to wait. I remember crying and feeling hopeless thinking three months is soooo long! You just have to adjust…. And you will….. this will make you so much stronger, trust me.
I hope you’re having a better day today
Oh you poor thing that sound so awful!! My cavity was deep too which I think resulted in the excess sepsis which didn’t drain properly…. I remember seeing the hole for the first time and being so scared!
That’s freaky – I didn’t even think of the possibility of it reaching your spine, but I guess it makes sense…. My fistula is located right smack bang in the middle near my tailbone. I had no idea when my abscess first appeared just how bad they could get, it left it for way too long, but then again I was with a terrible gastro who refused to let me see a surgeon….
I don’t have any paper work ‘in the works’ yet either….. they say its not worth applying yet because it will just get knocked back, we have to wait at least three months before applying, and then when we do apply, it will be a few weeks before my first infusion (if my application is successful). So the 12 weeks is up at the start of September, I think I still have another month of tubey life and waiting to go…..not a nice thought when my fistula hole is growing.
So Frogelita is this your second abscess? Your fist abscess sounds like hell – so big!! I also get mad when I hear about dr’s asking if you have a fever, like that is the only proof that you have sepsis….. its not!! The abscess closes infection off so of course you’re not always going to have a fever! Throughout all my abscess hell I didn’t have fevers, but for the yrs before it came to a head I did….. I think that’s what it must have been. Just because you don’t have a fever doesn’t mean there’s not left over sepsis, I had left over infection and no fever…. If it hurts and is sensitive to touch, there’s something wrong….. Unless you are just still healing. I was sore while I healed. I hope things get better for you, it’s such an awful thing to go through….
crohns/colitis/lupus/hyperthyroidism-seton fistula pentasa prednisone cipro flagyl vicodin Ultra
waiting on Remicade