Frustration -- PG here too

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ErinDF

Joined
Aug 5, 2008
Messages
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Grarrrr!!!!!!!!!!!

Some of you may remember me but I haven't been around as much. A year ago I had an temporary ileostomy done. Unfortunately, my fistula tracks never healed and I developed a serious stricture...so my surgeon and GI recommended making it permanent (as a colostomy). I had been feeling so much better with the ileostomy that I agreed.

Since the colostomy (in mid-November), I've been feeling okay -- though I'm still tired and struggling to recover. But, starting about Saturday I was having some real pain under my stoma and the area around a couple of suture sites had turned quite red. I thought it was an infection so I made an appointment with my ostomy nurse for today (Tuesday). When she took off my bag, I couldn't believe how much worse it had gotten! Its PG (very clearly) and I'm totally freaked out. I know from this board how big a problem PG can be!!!!

Well...at least they're catching it early and treating it aggressively. They got me in to see a dermatologist tomorrow and I'm going to get some injections. They're also starting me on some sort of topical ointment and an anti-biotic (augmentin). They also gave me percoset (I had been taking vicodin -- which doesn't work quite as well, though it does make me less groggy). I'm just so frustrated, I can't even tell you. I feel like I always have every complication in the book and I never get a break. On top of it all, I started my new internship for the quarter last week and I don't want to skip too much work! Its not that I'm in so much pain that I can't go, I'm just concerned about driving while on pain meds.


GRARRR!!!!!!!!!!!!!!!!!!

Okay...I had to get that all off my chest. Cross your fingers for me that these treatments work and I get better quickly.

(P.S. Kello -- seriously...the evidence is growing for you and I being medical twins. :p)
 
Oh Erin, all my fingers and toes are crossed for you! I remember you well - you and Kelly actually had your surgery right around the same time right? I am so, so sorry you now have this to deal with as well. I am so glad to hear they are treating it aggresivley. I know we haven't spoken together much but am sending you all my love and best wishes for fast healing x
 
I am so sorry Erin. I always hate to hear when one more thing gets added to a Crohnies plate - just not fair! I'll keep my fingers crossed too that the injections and meds work to get it under control for you quickly!!
 
Ugh - that's something you didn't need to deal with for sure. I'm sorry, girlie.
No advice for you, but can you wait until you drive where you need to be before you take your pain meds?? That way you wouldn't have to worry about driving?
Hope it gets worked out.
 
Kimberlie -- the ostomy nurse is actually coming with me to the derm appointment and she is very serious about no trauma to the wound (she talked about it alot yesterday). I think all the derm is doing is injections of some kind of medicine. The nurse and surgeon said that this derm's office has seen slot of PG...so hopefully they'll know what to do.

Everyone else -- thanks. I appreciate the good wishes. :)
 
omg girlie, what the hell?!?!?
man. i dont even know what to say im just speechless right now i cant belive this. i wonder what it is, i mean...why. why why why do certain stomas get it and certain others dont? like you said, you feel like every possible complication always happens with you and i feel like ive always been the same way, so WHY?!?

gosh.
well im glad that theres a handful of us here to help eachother out. well, not glad but you know. it helped exponentially to have mike and kim to know what its like. i dont know how to do this alone.

is the topicla oinment youre using called protopic? it is topical tacrolimus is the medical name for it. thats what im using now and i *think* its helping a teeny bit.
the problem is tho that it hard to figure out how and where to apply it cause its greasy and just makes my appy fall off. right now im just putting it on the top side of my stoma.

will you post a pic when you get a chance? oh DEFINITLY take a photo log of it. EVERY time you change your appy take a photo. i cant even explain how helpful its been to flip thru them and see how it has grown and changed. it also helps to test treatments cause every time i open up my stoma it always looks the same, but over weeks you can see tiny spots where it may be getting better you know? make note of when you start any type of treatment so that when your looking thru pics you know wich one was day 1 of such and such med.

as you know theres plenty of pics in my surgery thread as well as on my fb if you wanna ever see and compare or anything. and i have a ton more on my comp so if you want to look thru let me know ok?

um also, with the percocet, it was great for me at first, it controlled my pain and i was ok daily. but if you find yourself taking a lot with not enough relif, deff tell your doc or go to a pain doc. i wished i had gone sooner even, the patch has been much better cause it keeps the control even. sleeping for 12 hours and then waking up to no percocet in my systme was a big problem for me, the patch gives constant relief while youre sleeping too.

umm huh thers like 38591204 things i wanna rattle about all these meds and dressings and stuff but its just a big jumble for me

absolutely if you have questions worries, w/e you can pm me or anything at all. though i probably wont have answers cause i havent suceeded at healing my own pg but we can talk about it.

you dont have a fistula ON your stoma right? one of the biggest problems for me is keeping my wound clean of poo, but also trying to leave it alone as kuch as possible. like kim was saying, its best to not debride pg or any type of cutting or biopsy, so even just ripping the appy off the wound is damaging you know? it just wants to be left alone, but at the same time the digestive enzymes are damaging too.
argh! what a struggle.

ramble.

ok well i will deff be asking you for help so feel free to do the same ok?

this sucks. im so sorry that you got this =/ and it happened b/c you have a colostomy now? did they move your stoma location?
 
Update -- reply

Hey,

So I've been to see the derm now. They gave me injections of something called Kenalog -- which is, I think, a steroid. I got it done initially on Wednesday (I got an appointment in ONE day) and will get another dose in three weeks. I will also be on protopic as soon as I get pre-approval from my insurance, but for now I'm on another ointment (which is apparently an ointment form of what the injections were). I am also on Augmentin (an antibiotic). A couple of days after the injections I saw my nurse and she said things looked a little better. Now I'm going away for the week for the holiday and I'll see the nurse when I get back.

Kelly -- re. the protopic question -- My ostomy nurse actually gave me aquacell. Its sort of a silver nitrate guaze. I put the ointment on that (keeps me from having to "spread" it per se) and it also protects the seal somewhat from the ointment. However, I'm also still having some adhesion problems as well. The other thing with the acquacell is that it protects the PG from trauma when you change your bag, which the nurse said is really important. If you don't have it, you should try to get it.

As far as the fistula issue, I don't have any around the stoma, so that's at least one problem I don't have (yet!). So cross your fingers that that stays that way. :)

Otherwise, some things are getting better. The pain is pretty tolerable, with the percocet. If it gets too bad or intolerable, I'll go back to my surgeon for something else.

My one hope for all this is that it seems like all my providers -- my ostomy nurse, my surgeon, and the derm are all of pretty much one mind on treatment and seem to have a lot of experience with PG. So hopefully I'll see some improvement soon!

Otherwise -- Kello, I can't believe you've been coping with this for a year. You're a superstar. How have you been feeling lately? Have you been able to start doing more normal things -- I know you were kind of putting off school and stuff until you started to get better.

Okay...enough rambling. I'll keep you updated on my progress...though I don't know if I'll be able to post pictures...its kind of gross enough as it is. :p

Erin
 
Sure Kimberlie,

I'm not sure they're PG specialists -- but they seem to have seen a lot of it. I go to Beth Israel Deaconess Medical Center in Boston.

I am seeing a colo-rectal surgeon there (she is the head of colo-rectal surgery) and the WOCN nurses here as well (they're both great). I've only actually seen the derm once, but she also seemed terrific and absolutely familiar with PG. BIDMC is a big, teaching hospital associated with Harvard and I have had no problems here. My gastro is also at BIDMC and I love him as well.

If you would like more details or specific names of doctors, just give me a PM.

Erin
 
No way -- you ended up with this thing too now? I can't believe it. :( Erin, I hope things improve for you quickly. Hang in there.
 
well then maybe ill take a trip up to boston....same as kimmy, ive been having so much truoble finding people who know what to do with this. they also sound like they work together really well erin? do they work as a team to figure out how to best work from all facets, derm, GI, wound care, stoma care, etc? im having troub with that too.

ok, ah kenalog yeah thats what they inject me with too. im glad it seems like its helping! im gonna get back for more soon myself, they seem to make a difference for me too. watch out for signs of infection, it can be a disaster if the injections go in an infected area. is your stoma near your incision? the steroids WILL imapair its ability to heal closed, that was a big problem for me, so make sure they keep an eye on that. some docs arent aware of that issue for some reason...

re the aquacell, yep i have used that a lot, it actually helped my incision heal very well. in the PG wound i have gone back and forth between aquacell and another hydrofiber dressing called Sorbsan. finally a stoma nurse told me to stick with the Sorbsan and thats what ive been with for a few months now. im not sure if one is better than the other for me, they both dont seem to do much except protect the skin there.
oh also, i think the silver in the aquacell and the silver nitrate are two different things, maybe slightly or just theyre in differnt forms? all i know is that silver nitrate sticks burn you and aquacell doesnt lol.
silver nitrate sticks are what they use to cauterize and they hurt. a lot. my surgeon used them in my incision wound and also in the PG and ive had em up my nose too, yummy. i dont think that it was very good for him to swab the PG like that though, i might be wrong, but if anyone ever comes at you with a silver nitrate stick, ask 2452908 questions before you let them touch you, ok? i think i made that mistake that day, and my sore was not happy about it.

thank god you dont have a fistula. i hope that means that your sore will heal quickly!!
hah i just tried plastic wrapping my entire wound bed with tegaderm to see if it will be protected from the fistula poo. my poor parents are constantly engineering new ideas on how to dress a fistula lol.

ahh i hope you feel better soon erin, fingers crossed that the shots and ointments will kick some serious butt.
 
Last edited:
Hi Kello,

Some quick thoughts...

I don't actually have an incision because my surgery (actually both of them) have been done laproscopically. My old ileostomy site is pretty much closed now, which is good.

They haven't touched it with silver nitrate or considered doing so (it has been used on some other wounds I've had)...all the docs and the nurse are quite serious about there being no trauma to the wound.

My treatment team does stay in pretty good contact. The hospital has a computer system that allows them all to see each other's treatment notes for me and they can e-mail each other too. My surgeon and my GI are especially good at communicating. My WOCN works out of my surgeons office and she and the nurse practitioner for my surgeon talk alot. I don't know about the dermatologist, but my WOCN came to the appointment to make sure all the information got passed along appropriately. Its a pretty good system. This is why I go to ONE place for all my medical care (if at all possible). :p

Otherwise...things have sort of stabilized. It isn't getting a ton better...but it hasn't gotten any worse. I was having trouble keeping my bag on, but the WOCN said I was putting too much ointment on and using too much aquacell. Since I started using less, the bag is staying on alot better.

Kello, what medicine are they using to try to get the fistula to heal? Are you still on Tysabri? Are they talking about doing anything else to try to get the fistula to heal? Could they put in a seton (or is one in?)

Okay...well, Merry Christmas and Happy New Year everyone. Hope it was a good holiday for everyone.

Erin
 
So, just a little update because I have a paper to work on!

Went to see the derm/WOCN again on Wednesday. They looked at the wounds and thought that, while they looked better, "we're not winning yet." So they did another series of kenalog injections and put me on Prednisone (50 mg for a week, 40 mg for a week, etc.)

Today, when I changed the appliance, I don't know if it looked better or worse, but it had definitely changed. The skin seems looser (only way to describe it), but the flesh under neath looks pinker and less angry and the wound seems to be less deep. I'm hoping this means its healing.

Also, I'm STILL waiting for pre-approval on my pro-topic ointment, so I'm still using the other one. I might end up healing before I get it. That would be ironic. :)

Hope everyone else is doing well in this new year. Okay...to work with me.
 
ive been wondering about u erin, im glad you updated. mine was looking nice and pink today too! often it has a grayish pink color that doesnt look so good u know?
i think i know what you mean about the skin being looser, like if you touch it you can slide it around kind of? its not attatched to the woundbed itself it just kinda hangs over it?
i hope the run of pred helps for ya, i got more kenalog shots last monday too. do they ever leave spots at the injection sites? last time i ended up with two black BLACK spots in different areas...bruises i assume? theyre gone now, but i was wondering if you ever got those too.

fingers crossed that it keeps looking up for you
 
Kello -- no black spots here -- though the skin itself does turn kind of black/gray, but my nurse said that's normal since the skin is kind of dead. Which isn't cheerful.

Annoying week so far -- I'm going away for the weekend and realized I forgot to order more supplies! Luckily, the nurse is going to leave me three changes at her office that I can pick up tomorrow. Stupid products not being for sale in person. :p
 
yeah the greyish black color overall IS normal. and it bothers me too. skin should not be black. its like when someone climbs mount everest and their toe gets frostbite and turns black and falls off.
not pleasant.
:(

stupid ass pg.
 
So...update number whatever.

Last week I had two tests done: an MRI (with barium, ick) and a very small biopsy done (I talked long and hard with the derm before I let them do that, but they had good reasons and they kept the biopsies really small). The concerns were two-fold: they wanted to know if there is underlying inflammation in the colon above the colostomy that could be causing the PG and they wanted to check for underlying infection as well.

Thus far I've only gotten results on the MRI and...surprise surprise, there IS underlying inflammation in the colon. Which is incredibly frustrating since when we did the surgery, they took out all the colon that was effected. They EXPECTED that that would get me a good long break from inflammation, but apparently that means about 3 months. The GI said that usually the inflammation that spreads like this is more mild...but knowing me, that is probably not the case. Grarrrrr.

In terms of treatment, they continue the kenalog injections, the protopic cream, and they bumped me back up to 40 mg of prednisone, because when I'm on 40 mg I don't have any pain from the PG. When we dropped to 30 I did. Of course, now the prednisone is giving me killer insomnia...but that's a story for another day. Perhaps tonight when I can't sleep. ;)

They have also started me on a 10-day course of cipro, because they need to make sure there is absolutely no infection at the site. This is because on Thursday I think I'm starting cyclosporine (sic?), which is a different immuno-suppressant and you can't be on it if you have any kind of infection. Basically, cyclosporine has been shown to have good results in treating PG AND it will treat the underlying inflammation (hopefully) or at least that is the theory. I just can't wait to begin getting off the prednisone...I'm not sure how much longer I can last.

Otherwise I'm doing pretty good. Now that the pain is under control, the PG doesn't really effect my life (except for the multiple doctors appointments EVERY week). Hopefully the new treatments will help.

Basically...I'm still frustrated. Still waiting for some improvement. Still waiting...
 
im always thinking about u erin im glad to hear from you.

sorry to hear about ur colon though :( thats most likely a factor in mine as well, i know for sure that my colon is still in trouble in there. i often wonder if i had just gotten the stup[id colectomy if i would not have developed PG. who knows. and now its a dead end you know?? i cant have anyhmore surgeries until this heals for risk of making it angry.

how does the biopsy site look? im glad that you were smart to be really meticulous about it and im glad your doc was smart about it too. i thank kimmie for giving me that advice lol.

i was on Prograf, similar to cyclosporine, now im on cellcept which is just another sibling in that family of drugs. ive been fearful to say out loud but i *do* think its helping. i hope it works for you! i was told it can take some weeks to kick in fully though, so dont be discouraged too soon.

keep going, we will get there someday :)

i would love to see a pic btw, if thats possible or your not embarrased, i will totally understand. i just spent so much time looking and looking for other people with this, im interested to see what it looks like on someone elses stomie.

always thinking of you hon :)
 

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