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scan before scheduling for reversal

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Posted 10/5/2013 1:04 PM (GMT 0)
Ok here is the think,
1. I am in so much pain because i tried everything and there's still a painful red ring around my stoma.
2. I am facing a lot of limitation at work because i have a uncontrolable stoma.
3. I just did my 2nd surgery on 3rd July 2013 and 3rd surgery on 8th July 2013.
4. I lost 30lbs in six mths and i am underweight now.

But i insisted to schedule my reversal surgery on end of this year. Surgeon wants to do a scan with a tube like gadget to make sure my infected area is completely heal before he can schedule the 4th surgery. Now my concerns are,
1. Will it hurt as he will insert the tube thru my stoma and the opening of the stoma is hidden, meaning he has to dig thru my red inflam skin :(
2. Do you think i will be ready by then? Surgeon wants me to gain another 14lbs before surgery an all i did in the past 2 mths, i only managed to gain 2lbs.
3. My scars are horrible, does any of you did plastic surgery to remove the uneven skin tone and uneven skin surfaces? if yes what is the surgery called and does it hurt?
Posted 10/7/2013 5:57 PM (GMT 0)
Hello survivor,

I know you've been through alot and your wanting to get all this taken care of and put this chapter behind you.

Regarding your red inflamed stomal ring. I have alittle redness under my stoma, took months post op to calm down, but it's still there. But this redness and burning doesn't restrict your stoma. The scope you are referring to is much like a colonoscopy, but in another way. This redness under the wafer doesn't inhibit the scope.

If your surgeon feels you would have a better outcome if you were to regain your weight, then it would be best. Sometimes doctors say this in reverse, lose weight before surgery. Before surgery will be the determination. Don't stress too much, try your best. Ask surgeon the 'what if's.' You don't have an underlying health condition, your results will be better than some of those here that were ill and underweight going through these surgeries.

I think I wrote before about abdominal reconstruction. I had a consult with a plastic surgeon, some here did use them successfully during takedown. The plastic surgeon told me how he would reconstruct it. It is considered an abdominoplasty (tummy-tuck). Though it's done in reverse, from horizontal to vertical. Enough skin to pull is a factor. When the colorectal surgeon is done with his part, the plastic surgeon takes over for 1 1/2 hours. Can't recall how the stoma incision would be dealt with. Also, this at your expense. Though, he and his secretary (his wife), weren't able to definitely tell me if anesthesia would be my expense or insurance would include it with the takedown.

Maybe those that did use a plastic surgeon during takedown will chime in. Haven't had mine.
Posted 10/7/2013 6:11 PM (GMT 0)
Forgot to mention,

You've been having leakage for quite some time. I don't know if anyone has assisted you.

I did in the beginning, it terribly broke down my skin. The red ring, as long as it's not itchy, infected, raw or tender, is OK. Again, I do have alittle bit of irritation and redness directly below. You might want to switch to a convex wafer, which pulls your stoma outwards. It might be too flush, inverted. Also, there is a washer/seal called Eakin Seals. Stoma paste stopped working for me after a couple months. After you wash and dry, alternating powder (if needed) and barrier wipe, apply paste in any dips you might have, mold open the seal, place it around the stoma, and then apply wafer. Press down around the wafer by the stoma for a good 2 minutes, then place bag and press for another 10. Also, doing this having a blowdryer has really helped get a better stick.
Posted 10/9/2013 9:33 AM (GMT 0)
Hello Windy!

Thank you for the reply!

I just worry when the surgeon insert the scope in, he will need to stretch my nightmare red ring to look for the entry point. I hope it is not painful :(

He want me to put on so much weight, but I just cant, it will take too long to do it. I have been eating like a mad man for the past mths. But nothing stays for long with my Ileostomy.

TUMMY TUCK! I dont want thatttttt.... but my tummy looks horrible!

I think my red ring is rather raw now, because the ring is now watery, smooth and red. Even when I apply barrier cream prescribe by doctor, the cream just doesn't stay on the red ring, it either slide away or stick to the gauss when I try to dry the liquid that most of the time causes the stoma paste to fail.

I am actually reading alot about Eakin Seal lately and yet I dont really have an idea of how to use it. I see eakin seal come in a wafer-like form with a hole in the middle but the smallest hole size is still too big for my Ileostomy. So basically if I apply the Eakin seal on my stoma, it will still expose my red ring! :( But I will definitely try the blowdyer this time round before I see my stoma nurse to know more about the Eakin seal. It is really challenging to do a good change when my stoma is always active!
Posted 10/9/2013 2:21 PM (GMT 0)
just curious, when you use the little measuring gauge around your stoma, what size is it? My stoma is rather small at 1-1/8". You said the smallest eakin ring hole is too big...I use the 2" eakin rings and the center hole must be dime size or less. When I use my rings, after I prep my skin etc, I apply the ring to the back of my flange first (I'm using the Hollister 2pc kit). I mold the ring to the very edges of the hole opening on my flange and then press that all down around my stoma. That's how the nurse in the hospital had showed me and it works great. I hold it there for a couple minutes then peel off the adhesive backing on my flange and stick the rest down. It's been working great so far. She had told me when I measure, I shouldn't have the ring flush up against the stoma touching it but just a slight bit of breathing room.

As far as changing when your stoma is active. One thing that was told to me by my ostomy nurse was to do it first thing in the morning before you even take a sip of water or any food. There is also the "marshmallow" trick which works for some. Eat 4-5 about 30 mins before and it supposed to slow down your output to a crawl. it's worked the one time I've tried it for me. I changed mine this morning as I got up. Took my old bag and flange off, showered and cleaned around my stoma and just laid down and did my full change with barely a leak.

Here is Eakin's website: http://www.eakin.eu/categories/2/patients.aspx

Post Edited (blksteeda) : 10/9/2013 8:27:35 AM (GMT-6)

Posted 10/10/2013 2:44 AM (GMT 0)
My stoma is oval in shape and I think mine is 0.6" in horizontal width and 0.3" vertical width. I am using convatex one piece with thick wafer and i dont even need to cut it to fit.

I did give a slight breathing room for my stoma especially on the opening that most of the time is hiding inside my skin. But still it is not working.. i have a little bit of skin fold and i filled it up with stoma paste but it only works at times, preventing other areas from skin irritation.

I love liquid food and sometimes i tend to take too much and my fibergel and med doesnt work. But i will try the marshmallow trick.
Posted 10/12/2013 9:53 AM (GMT 0)
I tried the marshmallow trick... it really works! at lead it thicken my output... and that is great during pouch change!
Posted 10/12/2013 10:53 AM (GMT 0)
That trick may seem odd but some people swear by it. I hope it continues to work. There definitely is no joy doing a bag change when your stoma is an active volcano
Posted 10/14/2013 4:21 AM (GMT 0)
You can tear the eakin seals and mold them how you need them, so don't worry about them not fitting. You could also try strip paste, which is a similar material, but it comes in a straight piece instead of a washer shape, and you just bend it around as needed. You don't apply them on your stoma, but right on the skin around your stoma (either on the wafer first or on the skin first... I like to put mine on my skin).

Hope it helps!
Posted 10/15/2013 12:05 PM (GMT 0)
Ok, i just received a bad new today. Eakin seal is not available in Malaysia :( Then I ask if there is any substitute but unfortunately the closest they can find is stomahesive paste. Well I guess i will try asking the hospital pharmacy when i go for my follow up end of this month. Sigh... if eakin seal is not available there either, I will just buy the barrier spray to strengthen the skin protection layer. *fingers crossed*
Posted 10/15/2013 6:50 PM (GMT 0)
Hi,If you go for the stoma adhesive make sure they give you the one without alcohol in it otherwise it will sting like hell when you put it on the sore skin x
Posted 10/16/2013 4:03 AM (GMT 0)
I've been using the alcohol paste since day one crohnielass, I guess i am so used to the pain now, I used to cry everytime i do a change but after a while, i have toughen up and just bear with it. I have not encounter those without alcohol content ones in Malaysia.

I've just write to Eakin to ask them to consider having the product from the UK to be distributed in Malaysia. I hope they do consider. Even I am used to the pain, but it is still no fun to have to go through it every time I change. What more those with permanent stoma, I feel sorry for them.
Posted 10/16/2013 11:31 AM (GMT 0)
There are a lot of other brands of barrier rings besides eakin, and there's also the strip paste. Are you sure none of them are sold there? Is there a catalog or something you can look at?
Posted 10/17/2013 3:21 PM (GMT 0)
I believe only countries with high crohn cases only will have the complete supplies. In Malaysia, during my stay in the hospital, I can say 95% are cancer patients and most are senior citizen. It is less likely to find someone with permanent stoma. I guess that is why they dont see the urge to provide a complete product range. As far as I've tried, I did not even encounter any pharmacy that is selling strips.
Posted 10/19/2013 4:55 AM (GMT 0)
Hi Accident Survivor, I had a colostomy due to a car accident Nov. 2010. My intestine problems began 2 months after my accident, and it took several months for my doctors to discover what was wrong. I had many torn ligaments, so my intestines were hanging or flattening inside the abdomen. Its now 3 years since the accident, I've had 4 surgeries, including a colostomy to get rid of the pain from nerve damage.

I have had a red, weeping rash around the stoma too. My ostomy nurse suggested I leave the stoma uncovered for a few hours (when the stoma is not very active) so that the rash will dry up. If you can, lay down with a towel handy to clean up any leaks. Then when you have to put on the bag, use stoma powder....that will help to keep the rash dry. I've been taking the bag off every night & sleeping with the stoma uncovered. The rash is drying & getting crusty. Keep using the powder every change to keep that skin dry. Look online for the stoma powder and Eakin seals, try Amazon at www.amazon.com. I've heard they have a section with medical supply products & may be cheaper than ordering from medical supply company. You would need a credit card to order, but I'll bet they will ship to Malaysia. Good luck!

Oh, another helpful product for rashy skin is Benzoin Compound Tincture. It stings a little, but it seals the skin to keep out germs and leaks & remains sticky so your wafer & bags will stick better. I ordered that through www.simplehomeremedies.com (simple-home-remedies) and it wasn't expensive, $8 US.
Posted 10/19/2013 8:53 AM (GMT 0)
Thanks for the advise Lincee, but how did you end up with 4 surgeries? Have you reverse your colostomy yet? How did you manage your scars? I hope there is other ways to remove the scar instead of to undergo a tummy tuck.

Unfortunately eakin seal is not available in Malaysia. I've requested Eakin seals sample from the UK. Waiting for the samples to arrive now. Will try it soon and if it works, i will check it out on Amazon website cause to courier it directly from the UK will cost a bomb!

I just bought myself an opsite spray today which creates a layer of barrier. I will try using this to help the raw skin. I am also aware of the airing method but i have an Ileostomy instead of a colostomy now. Ileostomy is very active and it is impossible to expose it for long as the output is either semi solid or watery unlike colostomy which the time of output can be predicted and output is solid.
Posted 11/10/2013 2:12 AM (GMT 0)
Sorry I didn't respond sooner, haven't been on the site for a while. I had surgeries trying to "avoid" having the last one-the temp colostomy. Like I said in October, had a car accident in Nov 2010, within 2 months, problems with bowel movements. Went to regular Doctor, then Gastro, underwent all sorts of tests. Referred to Colorectal Surgeon in June 2011, scheduled 1st surgery July 2011.....

So, here are my surgeries since the car accident & resulting intestine damage from the accident/seat belt...1) Surgeon found many torn ligaments, my intestines pancaked, flattened (very painful!), like a "bad rectal prolapse involving a lot of intestine 2) removal of scar tissue, looked for additional damage 3) enterocele repair, lifted vaginal vault to help bladder (trouble urinating with enterocele-bowed intestinal/vaginal wall. 4) Agreed to experimental insertion of Electrical Stim Unit to help with constant pain, nerve damage. By second month, I knew it wasn't helping. Waited six months to have the final- 5) temporary colostomy.

Wow, forgot the one surgery! Yep, been a long road for me too. My accident was a rear end collision, driver "never saw" me...so hit me full on, never used the brakes!! I suffered head, neck, spine soft tissue damage. Couldn't lift my arms to elbow level or higher for approx. 8 months! My right leg twisted in the hip socket. I've had pain, coupled with nerve damage so couldn't even FEEL the rectum. Any activity in bowels has me in a lot of pain...still!! I'm on a medication called Linzees to help with bowel movements. Now I only have pain a few hours a day until my intestines are clear. Heck of a lot better than the constant pain!

I'm so sorry that you've gone through all this due to an accident. You're less than half my age, so I can understand you worrying about scars. Trust me, someday there will be someone that loves you, scars and all! Those scars are testament to all that you've been through and triumphantly overcome! The scars will fade and the memories of the day-to-day pain will fade too. I wish you the best of luck, Accident Survivor. Just know that you will come out of this just fine! :)

I'm still here too, got all 4 limbs...so I'm dealing with it. I plan on getting the permanent colostomy in the next few months. Have appointment with my surgeon to go over some issues- had a regular bowel movement this week (verrry painful) so the output bypassed my temp colostomy. His nurse claims that happens "intermittently" Also....do our intestines regenerate? I want to know if its reasonable to expect the nerve damage and pain to ever go away. If not, I'm going to push ahead with the permanent colostomy.
Posted 11/18/2013 9:10 PM (GMT 0)
Hi Lincee!

Reading your post comforts me and is making me emotional at the same time. wish I could give you a hug. I was the passanger and a drunk kid drove counter-traffic on an expressway before his car collided with my colleague's car.

It was a nightmare and I was conscious until I went in to the operating theater. I still remember the first question I asked my surgeon was "Am I gonna die?" and I still remember his reply after a second of silence, "We will try our best". And I went out of the ER room, saw my mom, and I held my tears and told her,"Mom, i will be fine, dont cry." Knowing that my injuries might kill me but I cant bear to see my family in pain. Just couldn't hold my tears sharing this with you.

I am grateful today :)

Just went to see my surgeon yesterday for my lopogram (the scan) result. My infected areas are healed and he already scheduled my reversal surgery on 23rd Dec 2013. :) So good news for me and my parents. I dont know what challenges will come after the reversal but is good that i can put an end to my red ring.

Lincee I hope you will be free of pain soon! best wishes to you!!
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