Seeking advice for colostomy complications - frustrated and in need of help!

Hello, I have posted before but have not had any replies. I had my ostomy in 2007, so you would think I had it just about down now. However, I have had problems since the onset. First of all, I have Irritable Bowel Syndrome and find that this affects me as much now as before my ostomy -- maybe even worse. I have eliminated sodas, wheat, milk, and several other things from my diet to try and help with the many diarrhea episodes I have.
I recently had a hernia repaired and hoped this would cut down on some of the swelling and bloating, etc. It did reduce the size of my tummy where the hernia had been. However, since that surgery, I have a very large POOCH all around my stoma! It is about the size of a girl's softball and it pokes out very noticeably, even under my clothing. It is almost cone-shaped sometimes the way it protrudes. And the bowel collects in this area and makes my abdomen very hard even to the touch. I don't seem to have a blockage, but I will say it is either small pellets or soft stool or pure right out diarrhea. I almost always have residue in my bag, and it pancakes because I have a slight convex. Thus, I suffer with irritation that can be very painful around my stoma, and often I must de-pouch in order for the area to heal around the stoma. The gravity seems to be pulling my stoma downward, but this does not help with the emptying of stool into the bag instead of around the convex cup. I went to the doctor, but he examined me lying down and I don't think he felt the hardness and fullness of the stool collected around my stoma -- even all the way around sometimes it is hard like a rock and sticking out. He said it was just a weak abdominal wall due to all the surgeries I have had. It is embarrassing. It is so discouraging. I lived my whole life with my bowel habits seeming to control my life, and I truly hoped the colostomy would change this. Is there anyone out there who has this same problem or might be able to suggest some things to me? I have tried medications for the diarrhea from IBS, but to no avail. I can take Imodium, but that is when it gets almost to the point of constipation. My insides under the skin and in the stoma literally seem scalded sometimes, as well as the exterior skin under the wafer. Can anyone please help me with suggestions?
Sorry to go on and on - just frustrated and wondering was it worth it!

I might sound like a broken record with this advice, Joy, but why don't you go get a second opinion. Some doctors are more competent than others. You already have concerns about the thoroughness of your own doctor's methods. Ask around and find a GI with the best reputation, perhaps one that is also teaching in a university-affiliated hospital. Good luck and don't settle for a life of suffering when another doctor might have the right intervention. There's nothing wrong with getting a second opinion, and any doctor who discourages you from seeking this should have his/her license removed.

Thank you for your reply. I had thought about going to a different doctor but I was afraid that I was just being paranoid. Maybe this is just the way it is.... you know. But I will take your advice and seek the opinion of another doctor. I don't want to be discouraged and frustrated. I have always been a positive person and I want to be involved in life as I should be. So thank you for this advice and I will post later with better news and circumstances.....thanks again!

Thanks for the replies and agreement of all that I see another physician. I will do that and keep you posted. I am thankful to be alive and I want to be a positive person as I have always been. I just thought maybe this was the way it is......Thanks again to all for posting and encouraging me.

That's the wonderful part of having a computer -- we can ask these questions and get replies from people who actually understand!!!! Medical personnel only have book knowledge and may not have been in contact with a patient with a similar symptom -- whereas, online we can contact others who have!! I have no knowledge of your symptoms -- I'm just here to give encouragement!! I never thought I'd say I was "lucky" to have had anal cancer -- but, when I hear stories from Crohn's patients, I realize just how easy my journey has been. (My young neighbor across the street from me has Crohn's and just had an 'ostomy' (not sure which kind) and she's had a tough time.
So -- keep on posting your comments -- we're always here to support you in any way we can.

Thank you so much for the encouragement. I will keep going and trying and asking until I get some answers. And I love this site. It is nice to know that others do understand even when they might not have had the same symptoms, etc. You are right about the doctors not really knowing. It amazes me that the colon specialists don't know more about this. Even the surgeon that did my colostomy seemed as if she had never done one before.
I am still interested to see if anyone else has the problems I am having. I know that my abdominal wall is weak but I really don't understand why the bowel gathers so much, and so often all around my stoma and stays so hard and protrudes in such a manner. I have plenty of bowel emptying and I don't think I have a blockage!?! I could stand to lose about 30 pounds but I fear if I do, I will look even funnier in my clothes - LOL.
Anyway, I am walking on and looking up. My life is a prayer and I am so thankful for the help God has already given me.
Again, thanks to everyone for the replies.

You have a lot going on and probably don't want one more thing to consider, but I did want to throw this out. My stoma is on the right side, and my left abdominal muscle was rotated down to create a new pelvic floor as cancer was found throughout the nerves, lymphs etc of my perineum. So I'm working with one severely compromised abdominal muscle. After several surgeries, I too had a pooch, but with the work of an excellent physical therapist I was able to build strength back up and the pooch is gone. The PT made a huge difference for me, and it could for you as well. If you decide to go this route try to find a PT that has worked with similar issues. I was surprised that sort of expertise existed, but it does.

Good luck!

Dave

Hello joyfulpromise,

I don't have anything more to add to the comments made so far -except perhaps to point out that before my colostomy I told the consultant that could not take immodium pills because thye were too strong and made me too constipated.    She suggested that I reduce the dosage by using it in liquid form - It's called Loperamide solution.     I measured varying doses with a 5ml syringe.    I found it so helpful at the time because I could vary the dose according to my own needs rather than a doctor's guesswork.

My very best wishes to you

Bill

Wow! I will try that liquid form of Imodium out. I think that definitely might help. They are considering putting me back on Lotronex, which is strictly made for IBS with diarrhea. I took it before my colostomy and experienced the best relief I have ever had. But they took it off the market except in controlled cases. I was able to take it as long as I went to a doctor authorized to prescribe. After my surgery, I couldn't find another doctor authorized for it. So I stopped taking it. Now I find that I can get back on it. So I am going to try that as well as the liquid Imodium. Thank you for these suggestions.
I also appreciate the information about physical therapy. I am definitely going to look into that. Right now I am going to PT for my knee, so I will ask my therapist if he knows something about that or knows someone who does. Right now I am doing pretty much pool therapy.
Thanks to all who have answered. I really appreciate the feedback and it makes me feel hopeful and not alone.
God bless you all.
Joyce

OMG, so sorry. I had a big letter here for you, joyful, and I bloody lost it. Grrrrrr... I did have in it to see if you can get a STN (Stomal Therapy Nurse) to teach you how to irrigate. I have a friend at NY Association who has IBS and she still does after her colostomy. I'm sorry you're going through so much crap. I really get pissed off to hear that you're suffering after going through all this shite. Sorry, language. Oops... I have Crohn's and ileo, so I'm only going on who I know and what they do and where I volunteer. So, I do get a lot of info and ask a few too many questions. I'm interested to know so much of ostomy's information where I volunteer my time. It's good to know. So, Nancy, my friend, she does suffer but sounds nothing like you. I'm really interested in this pouch, or is that meaning something else?? Please, honey, I'm getting a second opinion on something else. I know once we've been cut up a bunch of times, they don't want to know us anymore. That's how I have begun to see things, anyway, like old meat (my buddy said). Joyful, please keep us up to date as I'm interested in your health, 'cause hey, we never know what shite's gonna come our way (hope not). I have 2 hernias as well and some other issues. I really hope you can find... Oh, before I go, yeah, you think gastro specialist did know pretty much all they should. As soon as they are hit with something, they can easily walk away. Worst thing, we can't walk away from ourselves. I tried to run. I must have caught up with myself in my sleep. Hahaha, sorry. I always need a crazy lol at myself or I might fall down... Please think about irrigating. Sorry, I didn't read the other posts but was reading your question and jumped in head first. Oops... Irrigate, maybe leave pouch off. Let your poor skin breathe a little. Grrrrrrr, makes me so angry we have to put up with anything lesser than THE BEST. Okay, maybe I live in fantasy land, but please keep us informed. I will be taking a look. XXX, Mooza, Australia. XX. FYI, 78500 Hollister deodorant. This will help for no pancaking around the stoma, just in case. Also great for smells.

Just wanted to say thank you for the advice. I am also working with a therapist and I think I am actually seeing some improvement in my tummy area. The "Softball" seems to be decreasing in size and maybe now it is more like a normal "baseball" - who knows, next it could be a tennis ball and then a ping-pong, HaHa.
I was very encouraged by all the answers I received on this site and I am trying them all. I did go to another doctor and actually changed doctors. I have been trying the suggested "Lotrimin liquid form" and it seems to be working as well.
Thanks all of you fellow members of this site.
It is nice to know there are others who care.
Sincerely,
Joyce

I too have IBS and I have to take 2 tablets of Imodium before each meal, and sometimes that doesn't help. I may add another tablet when I have an in-between snack. I go 2-3 days with runny stool, then all of a sudden I will have somewhat thickened stool. I believe the Imodium helps. Maybe it can help you.

I also have problems with my colostomy. At first, I had granulation tissue built up on the bottom. They excised it and now I have a raw, sometimes bleeding area there which will not heal, even using Aquicel. I also have developed a raw, bleeding area at the top of my stoma which I am in the process of trying to heal. My stoma opening, for some reason, is placed at the very right lower corner so stool runs out onto my raw area and thus washing the Aquicel out. They are sending me samples of Coloplast pouches in hopes to force the opening up and over. I will believe it when I see it. The only other option is another surgery to reposition my stoma opening, which my surgeon is reluctant to do as I am a great risk. So what does one do? Go for a second opinion? Put up with the pain and burning discomfort? If anyone has a better solution, please let me know. rodnreel

I've had extreme IBS before after my colostomy..what a pain!! I eat cheese, marshmallows, yogurts and I cut out my caffeine drinks. Helps sometimes.