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Hi All @ CCFA World..

I am writing today because I cannot bare any more of my sisters pain, anxiety, careless nurses, incapable doctors and trauma.

My sister was mis-diagnosed 7 years ago and was told she had UC. Meanwhile, after 2 surgery's at the Cleveland Clinic 1st) Ileoanal anastomosis. The second was to reverse the Illeostomy so she was able to use the J-Pouch. Had nothing but problems since. She had suffered from pouchitis, low blood count, anemia. She was told to give her pouch & toosh a break and to re-have an Ileostomy until her body could heal and she could regain her health and strength.

The first time she had the colostomy bag, it took some time but finally we/she was able to keep it under control. Well, this time she is 100 lbs thinner and her stoma is actually down and inside instead of out of the body. She had just received word that she doesn't have UC, but actually has Crohn's Disease. She wants to keep her J-Pouch and doesn't want to have to use a colostomy bag for the rest of her life.

1) The doctor had given her an option to use Remicade as a treatment, but was told it most likely will not help.

2) I thought the colostomy bag would be a breeze for her after having had one before. Now that she is 90 lbs. and has a stoma that is inverted, the bags do not stick very well. They have leaked 3 or 4 times in 1 day. Around the opening of the stomach is all red and irritated and she says it feels like someone had poured acid around the hole. This has made her full of fear to even go out and get the mail. Not to mention extreme anxiety and depression. She is now trying the colostomy bag that comes w/ the belt but says it is so tight it is so uncomfortable.

Anyone have any suggestions or ideas that I may pass along to her. This is breaking my heart and I can no longer see her suffer as long as she actually has.

Thank you for taking the time to read this worded story.

I carry my sisters heart in my heart. Where I go, it goes with me!

LNR

 Reply posted for inarush155.

I was so touched by your concern for your sister. I live in MI & traveled to Clevland Clinic to have 3 surgies. I have had a total of 4 major surgeries in 11mos.  I have had crohns since 1985.  I am now living without an illiostomy which was reversed Nov 30th last yr, I had an inverted stoma, and now I am living without a large intestine, but no more bags, I had the burns & just about everything she is experiencing. Please contact me by e-mail if you are interested. I would love to try to help or give my opinions.  I had an excellent surgeon, but being from a small town in MI the first surgery I had here the surgeon did a huge boo boo lets just say I am overjoyed that I am with my family today.  After that I knew I needed further surgery so I investigated the best hospitals for colerectal surgeons and found Cleveland to be #1.  Although it was filthy they saved my life. Maybe we can even talk on the phone. My e-mail is caspellicy@charter.net.  I have put your sister on my prayer list & will begin praying tonight.  There is a light at the end of the tunnel, and this disease is a pretty tough one.  What a great sister you are, my sisters were right by my side, and my husband was my lifesaver!! I hope to hear from you.

Carlee61

 Reply posted for Louann.

THANK YOU! THANK YOU! I will pass along all this fascinating and gracious information.


I have mentioned the Ensure and I think she does drink the gatorade as well. I will forward your message to her so i don't play whisper down the lane and tell her to go see Live Aid instead of drink Gatorade! Although I think she should be sharing her stories and experiences with all of you as well. For her own mental and physical health.

You all are fabulous!

 Reply posted for KristinK.

I give you all the credit in the world. To most people, this is imaginable~

 Reply posted for KristinK.

Ten years ago I had J-pouch for UC and have had nothing but problems. They are thinking I have Crohns and putting me on Remicade, I have a fistula (have had blockages, constant pouchitis, dehydration). Why does the MD believe Remicade will not work? I would have tried prior to another surgery at her low weight. She probably has no appetite. When my weight is low after surgeries I supplement with Muscle Milk, or Ensure made into a milkshake. Eat small amounts frequently. She has to get some weight on her, is she depressed? I have been and medication was very helpful, nothing to be ashamed of after all she has been thru. Also, eating a Metamicil Cracker a day helps formation so her bag will not be so liquid. She must drink Gatorade, I prefer G2 with less sugar, I think sugar aggravates my symptoms. That said she needs calories for weight. Good luck, she is fortunate to have such a caring sister. We really need a patient advocate when we are sick.  It is a long process to get over surgery. One day at a time, some bad, some good, but eventually the good days are more frequent. Maybe get a second opinion on the Remicade.

 Reply posted for inarush155.

Glad to hear your sis is doing better.

Her situation is the same as mine - dx of UC at age 9, total colectomy with Jpouch at 15, terrible jpouch problems, then back to a permanent ileostomy at age 19. I'm 33 now, and healthier than ever!

Check out www.uoaa.org . It's a great resource for people with ostomies.

 Reply posted for nevincent.

Thank you thank you for all of the good advice.

Good news, well now it is. She had to have her other incision  closed up where her original stoma was because it was inverted too much.  They opened her up on the other side and gave her a different stoma so now she is as worry free as ever. (for now). She was in the hospital since October 6 and was just released on Friday. I'm keeping my fingers crossed!

THANK YOU FOR THE AWESOME ADVICE. I WILL STILL PASS IT ALONG TO HER.

HAVE A NICE HOLIDAY!

 Reply posted for inarush155.

I had an illeostomy for 5 months and had a lot of trouble with inflamed skin around the stoma - it was always very very sore.  Finally someone told me to spray the area with nexcare liquid bandage being careful not to spray the stoma itself.  I would hold a Kleenex next to the stoma as I sprayed this on.  It did help a lot.  Hope this will help you too.  Good Luck!

 Reply posted for camellion.

Thank you so much for your input. She actually had a consult with her doctor the other day and it was just too inverted and she is just way too thin. They decided to close  her up and cut a different hole f/ stoma  on the other side~so hopefully that will help. It was starting to get infected and not do-able. She went for surgery today so i'll let all know what the outcome is. Keep your fingers crossed!!!

THANK YOU THANKYOU!

 Reply posted for inarush155.

inarush155

l have had colostomy bag and had a lleostomy bag l could never get the bags to stick due to leakage, l found the 2 piece systems the best, after ringing all the suppliers and asking for samples to be sent out i found what best suited me, my stomas were also inverted, as for the burning pain the 2 piece will help relieve that, the colostomy paste also works but does sting when first applied, Bapathanan cream helps to relieve the soreness but does need to be washed of before applying the bags. l have had crohns for 17 years and have tried many different methods hope these help.

 Reply posted for con.

You are too kind.

Thank you so much for the info.

I am sorry to hear that your brother did not come out to see you. My sister and I are very close (I am actually her sister too) and we have a tight bond. That being said, I also have a background of working in a doctor's office for 10 years doing testing and such on patients.

Some people are cut out for this medical/illness stuff and some are not. I have drawn blood from some of the toughiest men in the world and they were the ones who complained the most. Like I said, it takes a certain kind of person. Emotionally this may be too much for him. But,  I am not saying that it should make your pain of him not coming any less.

Stay strong. You are a good person!

L

 Reply posted for mtmcdaid.

I am on the phone w/ her right now about to give her your great advice!

THANK YOU!!! A BAZILLION!

 Reply posted for Robert.

Hi Robert,

I would definitely like to discuss this further. I wanted to share the info w/ her first and also maybe get her sorry "butt" on this forum page as well.

It's hard not to get your hopes up but I certainly am happy if it has made one persons life w/ Crohn's much easier.

She is having surgery next week to have her stoma moved so it is more managable. Her doctor agreed it was not in a good spot.

Thank you so very much!!! Thank goodness for this forum!

 Reply posted for Robert.

Thank you ~Thank you~ to all of you! Your advice, help and shared experiences are much apprecitaed. I will pass these along to her ASAP!

You are all fantastic wonderful people.

LNR

 Reply posted for inarush155.

LNR,

I definitely empathize with your sister's situation. I have Crohn's disease and wore an ileostomy bag for the last two years. One month ago I had surgery to have a BCIR pouch created. Essentially I have a pouch that is made of my small intestine and I drain it a few times a day with a catheter. This surgery is typically not performed on Crohn's patients, however, they will consider them. I can't post the website on here (due to site rules) but you can easily find the site by searching the net. To me it has been a miracle! Don't want to get your sister's hopes up but it can't hurt to look into it . . . a high percentage of the patients who have this procedure performed actually have it to replace their J-Pouches. Let me know if you'd like to discuss further.

Robert

 Reply posted for inarush155.

There are a couple of tricks I have learned in the two years since I had my colectomy.  After much experimentation with different solutions, I settled on the Hollister New Image two piece system with the Flextend skin barrier.  I am able to get away with having to change the skin barrier every 5-6 days even when I exercise (sweat) on a regular basis.  Because I only have to change it every 5-6 days, it gives the skin time to "relax".  When I do take it off, I rinse the skin only with warm water.  No soap, no lotion, no anything!  I then use a blow drier to dry the skin completely.  I then apply a thin layer of anti-fungal powder and let that sit for a minute or so while I am preparing the skin barrier.  Right before I am ready to apply the skin barrier, I use the blow dryer to blow off most of the power.  I've learned that I can only leave a VERY thin (almost non-existant) powder residue or else the skin barrier won't adhear properly.  With this process, I have not had any significant skin irritations.

Because your sister's stoma is recessed, you won't be able to use a standard skin barrier.  Hollister makes a convex barrier that is used for smaller stomas but honestly don't know how well it will work in your sister's case.  I definately think it is worth a try.  Give them a call and they will send you a free sample.

 Reply posted for inarush155.

Don't Worry, life DOES go on. Although I'm new to the Crohn's, I have had the bag since I woke up from the surgery. I was having the similar problem with leakage on my bag and skin rash. As the Nurse recommended, as long as you keep the area dry after rinse, the rash will slowly go away. But keeping the skin dry is very important. No lotion at all.

My trick to prevent leakage is when I applied the bag, I lay down completely flat. All the muscles should be stretched at max, so when you make a movement, the bag should followed the position. Try it. See if it works.

When things get better, take your sister out for a walk or do something outside the house. That really helped the depression. Plus she needs the sun light for her skin too.

She is lucky to have a brother like you because my brother didn't even visit me since I've been sick. He even too scared to call. Don't know if lord really care about me, but family and friends are very important to anyone's life. You are appreciated!