KWalker
Moderator
Hey everyone,
It has been a long time since I've been on crohn's forum. For a while I was doing really well and was able to really get away from the computer and be active/always doing something.
For those of you that remember me, a quick update- I recently got married to the amazing woman who has stuck by me and always been supportive with my crohns, and my wife and I are expecting our first baby!
Regarding my crohn's, some of you may remember how many problems I was having with my abscesses. I had surgery in May 2015 where they finally placed two setons (elastic, non-cutting), which I still have today. (We'll get to that later). I have finally found relief and am finally no longer complaining about abscess pain. I am no longer on the SCD diet because although it helped a lot of my problems, it was extremely restrictive, expensive, and I missed a lot of the foods I couldn't have anymore. I decided to go back to the medication route and I was started on 100mg Simponi shortly thereafter, however I did not notice any difference so I was bumped up to 200mg. I still take my psyllium and I really notice the difference when I miss a day. I still haven't been able to take it with anything other than juice though because the taste of the psyllium is too much.
I'd say for the most part I've been doing fairly well. I think when I left the site I weighed around 150lbs and I now fluctuate between 170-180. I reached 200lbs for a short while but I was eating like a horse to achieve that and thought it might be a bit much- and I think the Simponi is wearing off. I can go about 3 weeks with it but then it quickly wears off.
Now, about my question. As stated, I now have two setons in place. One side is doing really well, and the other side completely rips my skin. If I do any walking (taking dogs for walk, walking around mall, too much walking at work) I get so much blood. My wife didn't believe the extent of it until I showed her. There are two problems with this seton. The knot has shifted internally and now each end have broke through the skin and now stick out (ouch!), and the seton has also rotated sideways, so although it is rubbery, it is starting to lance through my skin and may eventually create another incision. I can move the one seton to adjust it as needed, but this side doesn't move as the each end of the knot has made it stuck.
The surgery was done through a colorectal surgeon who has since discharged me from care after the surgery, and my GI (as great as he is) acknowledges that this isn't his area of expertise so he doesn't have any advice. The only thing stopping me from cutting it out is the fear that another abscess will form.
Has anybody else had this problem with setons?
Also, what is everybody on for medication now? I can add Simponi to the list of medications that stopped being effective. Are there any new medications that are showing to be promising? I talked to my GI about LDN in the past but he wanted me to try Simponi first, so that may be an option when I see him again.
I hope everybody else is doing well!
It has been a long time since I've been on crohn's forum. For a while I was doing really well and was able to really get away from the computer and be active/always doing something.
For those of you that remember me, a quick update- I recently got married to the amazing woman who has stuck by me and always been supportive with my crohns, and my wife and I are expecting our first baby!
Regarding my crohn's, some of you may remember how many problems I was having with my abscesses. I had surgery in May 2015 where they finally placed two setons (elastic, non-cutting), which I still have today. (We'll get to that later). I have finally found relief and am finally no longer complaining about abscess pain. I am no longer on the SCD diet because although it helped a lot of my problems, it was extremely restrictive, expensive, and I missed a lot of the foods I couldn't have anymore. I decided to go back to the medication route and I was started on 100mg Simponi shortly thereafter, however I did not notice any difference so I was bumped up to 200mg. I still take my psyllium and I really notice the difference when I miss a day. I still haven't been able to take it with anything other than juice though because the taste of the psyllium is too much.
I'd say for the most part I've been doing fairly well. I think when I left the site I weighed around 150lbs and I now fluctuate between 170-180. I reached 200lbs for a short while but I was eating like a horse to achieve that and thought it might be a bit much- and I think the Simponi is wearing off. I can go about 3 weeks with it but then it quickly wears off.
Now, about my question. As stated, I now have two setons in place. One side is doing really well, and the other side completely rips my skin. If I do any walking (taking dogs for walk, walking around mall, too much walking at work) I get so much blood. My wife didn't believe the extent of it until I showed her. There are two problems with this seton. The knot has shifted internally and now each end have broke through the skin and now stick out (ouch!), and the seton has also rotated sideways, so although it is rubbery, it is starting to lance through my skin and may eventually create another incision. I can move the one seton to adjust it as needed, but this side doesn't move as the each end of the knot has made it stuck.
The surgery was done through a colorectal surgeon who has since discharged me from care after the surgery, and my GI (as great as he is) acknowledges that this isn't his area of expertise so he doesn't have any advice. The only thing stopping me from cutting it out is the fear that another abscess will form.
Has anybody else had this problem with setons?
Also, what is everybody on for medication now? I can add Simponi to the list of medications that stopped being effective. Are there any new medications that are showing to be promising? I talked to my GI about LDN in the past but he wanted me to try Simponi first, so that may be an option when I see him again.
I hope everybody else is doing well!