• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Recent content by Sailorluna

  1. Sailorluna

    Low res / low fiber

    Hey all, Been a while since I posted. My fistulas are all under control and have been for quite a while so I have been focused on lots of other things! So.. of course other things are going on. A big blockage in November and after bowel rest they started to switch from 2xCimizia dose to...
  2. Sailorluna

    In a panic

    Hi all. As some of you know I was quite convinced that I had a bladder fistula. They did they mri and the good news was no bladder involvement the bad news was the gi wanted me to take the mri disks to the surgeon for his comments. Turns out that they did the wrong kind of mri to check for a...
  3. Sailorluna

    possible bladder fistula

    So week 3 of uti just ended. I am about to start antibiotic #4. Finally being heard about it being a fistula. Can anyone comment on how that is treated? I can't imagine a seton works
  4. Sailorluna

    twitchy gut

    Ok, here is a weird one. Yesterday and today my abdomen (left side only) has been twitching on and off. It does not hurt but is strange. Almost feels like it is vibrating. has anyone else had this?
  5. Sailorluna

    MTX and foot cramps.

    Hi all, has anyone heard of mtx injections causing foot cramps?
  6. Sailorluna

    Seton is suddenly longer

    Here is a strange thing. My most recent seton went in a couple weeks ago it is rubber and quite a bit looser than my other seton. This morning I noticed it is hanging out an extra half inch or so more than it used to. I figured it must have broke and rotated it through the track - it passed...
  7. Sailorluna

    Big chunk of flesh gone after drainage

    Hi all, I have had some ups and downs since the last time I was around. In February they did a scope and announced that I was finally healing and a couple weeks later I started having joint issues again and my rectal fistula started acting up. I finally went in last week to have the surgeon...
  8. Sailorluna

    Good news - gotta share!!

    Hi everyone. So as some of you know I have had a rough several months. Abscess, nasty flare, doc talking about a bag...etc. Well, I got good news today. I have been on double cimzia shots for three months with the plan of getting a scope to see if it will finally affect my horribly...
  9. Sailorluna

    Endless D, nasty flares and Pred

    Hi all, over Thanksgiving I had a rectal abscess -they also mentioned that my rectum is very inflamed. and since then I have had bad D. The kind that wakes you up a few times every night running for the bathroom praying you make it before its a giant mess. My mouth is full of ulcers and joints...
  10. Sailorluna

    Double cimzia

    Hi all, My GI wants to move me to 2 shots of cimzia every 2 weeks. Has anyone else tried this?
  11. Sailorluna

    How often do they check your seton?

    Hi all, Just curious how often you have to see the surgeon and have the seton / fistula looked at? For a long time he wanted to see me monthly it always seemed too soon. Now its 6-8 weeks.
  12. Sailorluna

    Iron infusions

    Hi all My iron is low (as usual) and they are trying to get me to take iron supplements. They always cause me tummy troubles so I end up not actually taking them for more than a few days. I am hoping to switch to iv iron in the hopes that it will be more tolerable. Can anyone share their...
  13. Sailorluna

    Fistula forum gone?

    Hi all, anyone know what happened to the fistula forum?
  14. Sailorluna

    Frequent fevers in child

    Hi all, My almost 10 year old daughter has been having fevers on and off 100 - 103 for about three months. Sometimes they last a day sometimes longer. Once a week. Nothing really besides being tired sometimes to with it. No stomach issues. I worry of course that she will have crohns. I did not...
  15. Sailorluna

    frequent fevers in child

    Hi all, My almost 10 year old daughter has been having fevers on and off 100 - 103 for about three months. Sometimes they last a day sometimes longer. Once a week. Nothing really besides being tired sometimes to with it. No stomach issues. I worry of course that she will have crohns. I did not...
See more
Top