Question for Mike

[Snowden1]

Hi Mike,
I know the other thread was getting long and I really wanted to see how you were doing? I don't want to bother you, but I am wondering if you are having any pain that has developed like some other people have in your stoma? (Although, I am praying you have not). Hope all is well. Just need to hear something positive right now.

Mary,
I didn't mean to stop your reply in the last thread. I am really weighing the odds on this bladder removal thing. Pain meds have not worked for me, as they interacted with my antidepressant, caused allergic reactions and urinary retention. I am seeing the pain management Dr. again tomorrow, but the nurse told me that she is not sure what they can do considering I have had reactions (some severe) to every single one. They have really tried by changing doses and meds. The ones I have been through are: Tramadol -bad kidney reaction and sedation, Fentynl (not sure of spelling) severe muscle contraction in my chest, Vicodin - gastro pain and acid reflux, Subcutex (also not sure of spelling) - ended up in ER vomiting, dizzy and breathing issues, Morphine -unable to urinate and felt irritable, Dilaudid (had high hopes for this one) - severe reaction with my antidepressant and also urinary retention. I have also tried vaginal injections to help the pain, but had so much more pain afterwards. I have tried home instills as well as all the other standard IC treatments.

So, does anyone know what you do after bladder removal surgery if you can't take any pain meds? I would think surgery would be out of question for me at this point. The only thing I can take short term is Vicodin. If I take it longer than a few days, I have gastro/intestinal reactions.

[Judith56]

Teresa,
It is possible that there may be a doctor out there who will do the surgery, but in general they do not usually do it for pain. Not only is it up to the doctor but also the insurance company who ultimately pays for most of it in most scenarios. The other thing you need to bear in mind is that removal does not always cure the pain. The surgery tends to see the best results in those who have diminished bladder capacity and frequency, though some people do get relief from pain once the bladder and urethra are totally removed. I am sorry that nothing has really worked long term for you.

[Snowden1]

Thanks for your post Judith. I really just don't know where to go from here. It seems I wouldn't be a good candidate for removal either.

[maryla]

Teresa,

I can't tolerate many narcotics either. But while I was in the hospital and afterwards. I took nauesa meds right along with the pain meds, as well as a stomach med and continued those while at home too.

So, don't count yourself out on that matter.

It really makes me sad for you that you just haven't found anything to help. But I know I did everything and then some to try and heal my bladder. And nothing helped.
Whatever, you decide, I'm here for you.

Please keep us posted.

Many hugs and blessings,

[Snowden1]

Mary,
Thanks for your response. I have typed and lost both messages I tried to post here. Maybe it's a sign. I am simply done. I don't see any hope to this. I can't describe what I have gone through lately. I don't have family support. I can't do this by myself anymore. I am done trying. So, I guess I will just have this crappy disease until it kills me. I can't eat hardly anything because I don't want the pain. Pain meds interact with the Lexapro that I need for frequency and sanity. I have had to go off of Lexapro totally because of the horrible reaction it has with the pain med. Now I must withdraw from the pain meds. I have tried and tried. I have good capacity and my frequency and urgency is better with Lexapro. This disease has just caused so many other issues like Upper GI problems, intestinal issues, nerve pain in my shoulder's, chest and neck. I constantly have something else to deal with. There is just nothing left to try at this point with yet another move in the summer.

[Judith56]

Teresa, never give hope that there may be something out there for you or something on the horizon. When conventional things don't work, some people turn to alternative stuff and have good success with it. I am thinking more along the lines of biofeedback,acupuncture, hypnosis, etc.

[Snowden1]

Thank you Judith, I do appreciate that you care. I have tried acupunture many times with limited results. I have also paid for bio-feedback and I still practice this. I have not tried hypnosis, but would be willing to do it. I am really frustrated at the amount of money I have spent just on acupuncture alone. Thank you, for the suggestions.

[suzannes]

Teresa,
I tried to send you a PM, I've been taking Low Dose Naltrexone since October and my pain has gotten so much better. I too tried many things and just wanted to feel better. I think my IC is an auto immune problem. There is a lot of info out there on LDN and auto immune diseases. If you have any questions you can PM me.

Suzanne

[mhwatters]

Teresa,

I am sorry I did not get to your question sooner. I started back to work Jan 3rd and have been very busy.

I am still feeling great, better than I have felt in 20 years. As far as my stoma goes, it gets a little tender at times but no pain so far. The one small problem I am having with it is that it tries to grow shut, so I keep having to pull it apart. If anyone knowns how to help keep this from happening, I would sure like to know. The doctor said as long as I keep the stoma hole large enough to cath that it would be okay.

I need to go get me some catheters today, I have used the same one for 9 weeks now and the tip is getting a little weak. It is the same catheter I started with.

It seems most people irrigate daily but my doctor is of the opinion that there is no great benefit to doing this. I have not irrigated for 8 weeks now. It is nice not to have that one more thing to have to worry about doing. Plus it is one more thing that could potentially introduce an infection. So, if it is not truly necessary, then I am glad I do not have to do it.

Sorry you have not been feeling good,

Mike

[maryla]

Mike,

I am so happy that you are back to work and are doing so well. WOW!

I no longer have bladder pain either, but there are other health issues cropping up. I would so love to be able to go back to work.
I haven't irrigated either for about the last 8 months ( I just hit my 1 yr anniversay the 7th) I noticed it made my bladder spasms a lot worse and those have actually almost stopped.

As far as catheters go, I use a new one everytime I cath because of infections. But hey if it's working for you that's great.

I would say as long as you can get your catheter in, your uros's right about your stoma size I really wouldn't worry about it.

I still have quite a bit of leakage even after a revision in Aug when I had my my hernia repaired and my stoma moved. He said the other day that the only way is to try and revise it again. I just looked at him and said no way, I'm done. And plus I had some trauma to my stoma back in Nov. So, I'm sure that it is still healing from that and I just think that it will get better with time.

Anyway congrats on your new life. We really appreciate your updates.

Many hugs and blessings,

[Judith56]

Mike I am so glad that things have worked out for you. We are all different when it comes to managing our pouches. I use my catheters till the tips get soft too. I buy them in boxes of 20 so I never have to worry about running out. I also do not irrigate. As for your stoma closing up,one thing comes to mind is that if it gets too bad, just sleep with a Foley in and clamp it so the pouch is still holding urine. I used to have to do that in the beginning because my tract was too narrow to get in the catheter through.. It really helped.

[Snowden1]

Hi Mike, Mary and Judith,

Could one of you tell me what it means to irrigate? Soo glad you are back to work, Mike. I want to go back to work so badly. That would be the ultimate, right after eating. But, like Mary, I am having other health issues come out. The latest, my bowels are going crazy. I go from having constipation to having diarrhea - hope this isn't TMI.

Mike, I know you had pain, but did you also have a small capacity bladder? My capacity has gotten worse, but it is still not horrible at this point. I do wish I could eat more without pain. I wish I was as brave as you all have done bladder removal. I just keep hoping something will work.

I don't know anything about how to keep a hole from closing up. Judith had good advise, I think. It may be similar to having your ears pierced, you have to keep an earring in there to keep the skin from closing up the hole.

I love reading your information and knowing that you doing so well. This is so inspiring!:woohoo:

[bob04951]

WOW Mike. So glad you are doing so very well. I read your post to Bob, we are still considering the removal, but not just yet. We really appreciate your updates, and are really, really happy for you. You are so lucky! Yay, there is hope out there and your doc deserves a huge pat on the back. Perhaps he/she will be the one to conquer this thing. Good for you and please post once in a while and let everyone know how you are. You go guy! Bob gets a lot of encouragement from you, it has been tough, but there are always alternatives. And :woohoo: back to work! Don't have the "proper" words to say about that. I will say in Hungarian Oyeeshtemum....OMG. Take care and stay well. Jill, wife of Bob

[Judith56]

Teresa, only people with continent pouches can irrigate. Think of it kind of like an enema. The pouch produces mucus that can build up and some times it does not come out when you drain the urine, so you need to flush it out with saline.Its like an instillation , but then you drain it all back out. Hope that answers it for you.

[Snowden1]

Yes, thanks Judith, all this stoma care etc sounds complicated.