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Posted 2/22/2012 11:39 PM (GMT 0)
What a cruel joke this disease is.  I got a permanent ileo to avoid the remote possibility of being on meds again/going through hell if I could prevent it.  Of course, as luck would have it, the one condition I could get (other than a blockage) that is EXTREMELY rare, especially in those who have UC and no remaining stitch of colon or rectum, is the one I got.  To make matters more difficult it is not a terrible case, and was responding well to protopic cream and one local injection of steroids, but now it is breaking down again. 

I am getting discouraged now :(.  I emailed the CR surgeon that took my case after my own CR had no idea how to treat me with this.  He said he will take me in again on Fri for another injection.  If you do, please pray this works for me.  This is such a long road for all of us, and I know I would be thrilled with my ileo if it wasn't for this unpredictable skin disease I now have. 

Does anyone have any experience with it?  Even if you haven't and have overcome obstacles/difficult situations early on, any words of encouragement in a this-too-shall-pass sort of way would be appreciated.  I am at the beginning of this new journey, and I just need some encouragement.

Thanks for listening.   

 

Posted 2/23/2012 12:08 AM (GMT 0)
colitis,

Sorry you have this. I do not even know what this skin disease is, but am sorry you have to deal with this. AND glad there is a doc who is helping you deal with it. Praying for you that the next shot works and ends this all so you can feel your best.

In the realm of this-to-shall pass, following a GYN surgery (that on retrospective review was not even needed, apparent misread of a pre-op scan and things rolled from there), I had to go 13 months being unable to eat or defecate due to large and small bowel being scarred basically shut with scar tissue. Some docs saying "It's all in your head" as I had small bowel obstruction after small bowel obstruction, some trying what they knew but never thought of scar tissue, one finally saying "you are so bad off nobody dares deal with you", then after seeing 10 docs I finally found the one who did the best that could be done. He unearthed small intestine from very dense scar tissue and made me the ileostomy stoma. I had lost so much ground in those 13 months in general health due to no nutrition that my teaching job did not take me back. I've since been traveling a LOT and learning to dance and lucky to be alive. But am STILL trying to figure out all these appliances, what to eat, what not to eat. Just gotta keep on truckin'. BUT thank god I can eat; I do not know how I lasted 13 months with no food! So, this too shall pass, may take you awhile, OR that one more shot may just do it. I guess perseverance is the key.

Good luck, Rosemary

Post Edited (esoR) : 2/22/2012 5:12:05 PM (GMT-7)

Posted 2/23/2012 3:25 AM (GMT 0)
The woman who writes the blog "bloodpoopandtears" is someone who can give you some advice. Not only is she very funny, she had PG with an ileo between Jpouch surgeries (and her dx was not changed to CD btw as I'm sure you must be worried about that). I remember her reading she had to switch GIs as well and had a lot of trouble healing it (it was next to her stoma) but in the end it got sorted. She's doing well with her jpouch. She's happy to answer questions. Good luck, I hope it gets figured out very soon.
Posted 2/23/2012 5:38 AM (GMT 0)
I am going to read up on this obstacle - but in the meantime as far as the this too shall pass; I went in for surgery on Dec 15 - ended up in the OR 4 times and stayed in the hospital for the better part of 2 months and was finally discharged on February 7. My stoma twisted on itself, the mesh that was put in to support the stoma got infected, my stoma was too "tight" and wasn't allowing anything out and had to be "loosened", stitches that I ended up with weren't strong enough and popped so I had to go back in to get new ones. I also had my medi-port removed while I was in there, an upper GI and a procedure in interventional radiology to place a drain that didn't drain anything. Good times, good times. Oh - I also got poked 8 times by anesthesia trying to place an IV, I finally told them enough and I had a PICC line placed.

Encouragement - despite all that, I still feel better (and felt better during all of THAT!) than I did the 8 weeks prior to surgery.
Posted 2/24/2012 3:51 AM (GMT 0)
Yes, I am worried about my diagnosis being changed to Crohn's, but at this point I don't think it will. I have my appt in Manhattan tomorrow and will ask him what happened with my glass slides and if they indicate Crohn's or not. My surgeon said that the lab at the hopital I had my surgery in said there was NO Crohn's at all. Also, over the 14 years I had the disease and 6 GIs I saw, not to mention the 10 colonoscopies I had due to precancerous polyps . . . everything/one said the same thing - UC. Hopefully they were all right and the pathology report from Mt. Sinai doesn't indicate otherwise!

Right now I am a little jealous of those who can ditch the ileo for a j-pouch because once the stoma is no longer there, I am under the impression that the PG goes away much more easily. Still, I am happy with my ileo, but I just am nervous about the PG being as difficult to heal as all of the literature indicates.
Posted 2/24/2012 9:54 AM (GMT 0)
colitis_sux, I wasn't trying to imply you did have CD in any way! Just wanted to clarify, I don't know enough about PG and UC/CD, I just mentioned CD because I know that's where I would be going with this if it were me. That's why I suggested you contact that blogger, she did successfully treat her PG at her stoma site, and her dx was never really in question (she was at the Cleavland Clinic). So, I think she'd be a good person to compare notes with. From what you say, it looks like a solid dx of UC and I hope you get some answers at Mount Sinai. I am sorry you're dealing with this after everything you've gone through. I hope it's healed very soon.
Posted 2/24/2012 7:41 PM (GMT 0)
Colitis-sux, I didn't have PG, but I had another skin condition -- cutaneous crohn's; it's also really rare. This was before my surgery, and thankfully in my case, surgery took care of it -- my gi wasn't sure it would; he thought maybe my immune system had just gone haywire. I got a little boil from being in bed so much after my second surgery and was terrified it was back, but so far so good for me...

Even though that biopsied as Crohn;s, I'm still technically indeterminate...... it's not always easy to tell whether people have UC or CD; my colon showed no markers for Crohn's (but some people w/CD don't show those markers....) Very confusing.

As for encouragement -- I have had several complications w/my surgery, but I'm getting better. Nothing is a sure thing w/surgery etc. I think you need to reframe though -- it's excellent that you don't have a terrible case. It's excellent that you found a dr. who can help you. You got through IBD, and you can get through this too.

I know it's really disappointing, so don't be hard on yourself about being upset about things.... but acknowledge present reality and make the best choices you can -- which is exactly what it sounds like you're doing.

Hopefully the reduced workload will help too. When you're overdoing it all the time at work, then everything else is overwhelming too. It's great that you were proactive to reduce your stress. Anything chronic is exacerbated by stress....

Really hope the treatment works and ultimately this is simple. hang in.
Posted 2/24/2012 9:17 PM (GMT 0)
Thanks everyone - killcolitis, I didn't think you were implying anything. Actually, I really was worried about it, and so was my new CR as he had me send the slides over to Mt. Sinai.

I had my appointment today and got a steroid injection, and the news on my glass slides is odd - apparently there were only three out of 30 submitted, and the three they had indicate severe active colitis; no crohn's. The surgeon also said that the PG can be present in UCers, although it is almost unheard of, in someone without any sign of colon or rectum left. Maybe I'll end up in some medical textbook, lol.

He also said my stoma is waaay longer than it needs to be, which I already knew. It is so long, even the hospital staff commented after my surgery. I thought I woke up with a sex change, lol. Anyway, the CR said he can very easily correct that as a same-day procedure, and it will make appliance changing much easier. Also, it will limit the trauma to my stoma, which has happened a couple of times due to rubbing up against the wafer.

I do really like this CR. My original one had absolutely no bedside manner, and could even be a little mean at times. I didn't care about that until I went through a tough time with the PG, and he didn't know what it was, but wouldn't admit it. Instead of recommending I go to someone who could help me, he let me get worse and took his frustrations out on me because what he was doing wasn't helping.

NOW I am hopeful that everything will fall into place from this point!
Posted 2/24/2012 9:44 PM (GMT 0)
Sounds like a good appointment! Glad you like your new surgeon, makes a huge difference.
Posted 2/25/2012 4:35 PM (GMT 0)
colitis-sux,

I'm sorry you have to deal with this upsetting skin condition but am glad to read that you don't have CD. UC is UC but I think it's easier than having CD.
What I don't understand is how your UC is expressing itself now, so that the slides show such high activity? Or are they old slides?
Posted 2/25/2012 5:26 PM (GMT 0)
These are the slides from when I had my colon removed. My surgeon at Mt. Sinai had me ask for the glass slides to be Fed Exed to him. I am relieved there is no crohn's too.
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