In serious pain!

[Jimena]

I am 4 weeks post op today. Loop colostomy was made. Yesterday i noticed that skin around my stoma is very sore and it was hard and looked like blistered. Stoma nurse wanted to see it and i was at her office today. She noticed that my skin has separated from stoma and there was 1cm deep hole in there. She was little conserned that tjere mihht be a fistula but didn't see or feel any connection anywhere. She cleaned it out with saline (goddamit that hurts like hell!!!!) Coz there was poop in there. That hole is right where i get the leaks all the time.

now i have to but aquacel in that hole every other day and hope that it will heal from the bottom. I have noticed that i smell poop all the time. I mean, everytime i get output or gas in the bag that smell just leaks out there. Where the hell the smell leaks!? My wafer is on tight. The poop smell is very strong, nothing like a little fart, but serious "i just shit on my self" smell what me hubby smells too.

pain is horrible. I can't walk, if i just lay down in the sofa/bed, everything is fine. Plus my stool is so thick that it pancaking all atound the stoma, not going down the bag where it should be.

i am just sooooo depressed coz everything else has been going great buy now this.

any advice? How long does it take that the hole heals?

 

[Samboi]

Are you taking anything to control CD at the moment?
I had a large gap post surgery - it was reflective of active disease.
Once I started taking Humira - it healed.
Until it healed - it was extremely painful.
It looked awful - every time I saw it - I would cry.
I'm so sorry that you're suffering.
I hope you feel better soon Jimena.

 

[Jimena]

I actually just read your story last night i have been on humira since 2007 and now i have been off it because of surgery. I supposed to start it 11.9. Again when i have my gi appointment. Mayby i should start it earlier? I am now 4 weeks off surgery.. thus is just sooo painful. I just lay on my back all day coz that's only thing that doesn't hurt so much.

i don't even know how often should i change my wafer. Stoma nurse said that every other day so i could put that aquacel in there but i think i might have leak under my wafer. Not sure though. I have eaiin seal ring under my wafer but it kind of lifts my wafer up and i think stool is going under there, don't know if it would go in to the skin.. i can't use convex right now so that's a proplem too.

soooo sick of this pain.

 

[Samboi]

I know for me - not taking the Humira earlier was a mistake.
And I suffered a lot of pain unnecessarily.
I spent a lot of time laying in bed, on my back, crying from the pain.
It was bloody awful.
Maybe have a chat with your GI.
Or have a chat with the CRS and have them look at it.
Another thing I learnt - the stoma nurse is not a GI, the surgeon is not a GI and the GI is not a CRS or a stoma nurse!! They all have their area of expertise and it is sometimes hard to know who to consult.

Just be careful that the stool is not leaking into the gap as you could end up with a very dangerous infection.
I covered my gap up using a very large Eakin barrier ring.

I really hope you feel better soon you poor darling.

 

[Jimena]

I think i have to call my doctor tomorrow. Sometimes they just thinks that you shouldn't start humira if you have some infection of something like that and i am worries that my gi says that i can't start it until this thing is fixed... :s

This really sucks! I am completely fine with my stoma but this pain is just horrible and making me regret the surgery. Now i don't have pain in the butt but pain in my skin i really don't know witch one is more painful.

 

[Samboi]

I had the same dilemma.
They wanted me to start Humira after the surgery had healed.
But because the disease was so active - the surgery wouldn't heal without the Humira.
In the end - I regretted not starting it sooner.

But your problem - that could be something else entirely.
You just never know with this disease.

 

[Jimena]

I just upload two pictures of my stoma in my profile's album. It's just getting worse

 

[windy]

You are in my prayers,and honey I think you made the right choice on getting surgery,but yes,call your doctor and get something done now . :hug: remember it takes awhile to get well after surgery,and some problems (like your's arise ) but I am certain your physician will give you proper meds for pain and help solve your problem. You will heal and get better. hang in there friend. my father had some problems with his bag on his side ,but got better and lived over 26 yrs with it.(he was 81 ,when he passed) .

 

[Nyx]

I had a giant hole beside my stoma a few years ago...it scared the hell out of me! But, I put a piece of non-stick gauze over it, with a big dollop of polysporin on it (the one with the lidocaine in it), then put my strip paste around my stoma and my flange on top of all of that. It healed up in about 3 weeks, but the lidocaine really helped with the pain. Not sure if this has been helpful or not, but I do hope you get some relief soon!

 

[annawato]

Oh Jimena I am so sorry you are having these problems. It must be very painful. I think the best thing is to call your GI and your surgeon and tell them what is happening so they can do something to help you. Don't wait for a scheduled appointment, you need to see someone as soon as possible.
:heart: anna

 

[Jimena]

Thank you all. It really means a lot to me have this support group.

my surgeon called me today and they are going to take me in hospital tomorrow. Thats good. I hope they figured out what this is and how to heal it fast. They are going to think my crohn's meds too. What could be a little hard coz i am using every med there is already but think i am going to start humira again and i hope it helps to heal my stoma and my TI.

 

[Jimena]

I am at the hospital. It's PG. they did start prednison 60mg and humira. And steroid cream in the cavities. Hope this helps!

 

[Samboi]

I'm glad you know what it is, you're being treated, and hopefully you'll no longer be in pain soon.
Glad you're on the mend and it's being sorted.
Hope you feel better soon.
Xx

 

[Jimena]

Thanks Samboi :kiss:

I get to go home yesterday. My pain is soooooo much better, actually i don't even have pain anymore (expect if i bend down or sit down in a wrong way), jihuuuuu! I am so happy. I can now even lay down on my side, not on my back all the time. What a relief!

Steroid cream and prednison has done good job just in a few days! Yesterday i did take Humira (80mg) too so that might kick in too.

My stoma nurse said that she has been stoma nurse for 33 years now, and i was her 3rd pyoderma patient that she has seen!!! Like winning a lottery... They did ask if they can use my stoma pictures in educating other doctors and stoma nurses coz pyoderma is so rare. They were so happy that i have been taking pictures from my stoma everyday so they can see how things have change around my stoma. There were like 10 doctors who wanted to see my pyoderma coz they never have seen it and few students came to see it too I am hapy if i can help them.

Hope this won't ever come back.....

 

[Samboi]

Terrible that you got it .... but how fantastic that your experience can be used to help others.
I'm so glad you're feeling better and no longer in pain.
Things can only get better from here huh!

 

[Axelfl3333]

That's a lottery prize no one wants to win.hope you recover quickly and get back to normal.

 

[annawato]

Hi Jimena, I'm so glad you are on the mend. Lucky you followed up about it and got some help. And how nice to be the star of the hospital. . At least something good is coming out of the experience. Happy healing.
:heart: anna

 

[windy]

So happy to hear that you are better! You went through a lot ,glad to hear that something good came out of it (like helping the doctors learn more about your problem ). blessings friend:hug:

 

[Jimena]

Thank you all :dance:

Things haven't change so much, cavities are getting little larger, but not so deep. I am not in serious pain anymore which is good! I see my gi and stoma nurse every week and i thinks next week i see dermatologist too if he have some idea what to try next. I am on 60mg prednison, 150mg Imurel and 80mg Humira. Lot more medication than before the stoma surgery. December they do scope to check my rectum and terminal ileum and then i have meeting with gi and surgeon that should we reverse stoma or what to do. It things are good.. I don't want reverse surgery too fast coz with my luck everything starts from beginning.

I like my stoma though. I really wish it would be little more spout coz now it's just skin level and i can't use hard convex wafers because of this PG. Yeasterday i get samples from Pelican, soft convex and these feels good. Only proplem is that these are one-piece and drainable, and my stool is so thick that it's very hard to emptying my bag..

 

[annawato]

i know what you mean about liking your stoma, I've become attached to mine even though it causes all sorts of problems - so much better than pre stoma problems.
Re your output being thick, have you tried drinking more fluids to thin it out? Not sure if this would work but my husband thinks my high and watery output is cos of all the tea i drink. Also maybe try and avoid those things that thicken output such as apples, oats, marshmallows etc.
Let me know if it makes any difference anyway so that I can tell others.
:heart: anna

 

[Jimena]

Thanks Anna! I have to admit, i am propaply drinking too little. Have to keep on eye on that. Thanks for the tip.

Tomorrow i have stoma nurse and GI appt again. I go every week on check ups. it's nice so i don't have to worry on myself at home. Yesterday i change my appliance and things look a little better. I am so glad that i don't have that awful pain anymore!!! I have huge cavities still under my stoma but i can manage with them as long as i don't have pain.

 

[annawato]

I'm glad its all getting sorted for you Jimena. I read on another post that you are finding the pelican bags really good so its great that you have found something that suits you.
:heart: anna