I'm so sorry you're having problems. I know having constipation again is my biggest fear. I have pelvic floor dysfunction and a slow small intestine, but I'm just praying it's not too slow.
Have you tried milk of magnesia? I know someone posted that they had to use mom every couple days and it helped. I know you hate the thought of laxatives again, but maybe it's something you could try. Will enemas work? My doctor said I could use enemas if I needed to.
There was a girl who used to post named Amey who had the same problem you're having. Also of course, poor Lizzie had constipations problems again. I have no idea if you can get constipated after an ilieostomy, but I'm sure someone will answer. I'd like to know myself.
I hope and pray things turn around for you soon. I've heard such good things about the Cleveland Clinic; didn't they have any other suggestions for you? I'm sure they must have seen this before.
Good luck Lori, and keep us posted.
I know I have posted to you before about all of my struggled post colectomy. I did miralax as well, it did not work for me and then I switched to MOM every day about three times a day, but never felt empty. I have sever pelvic floor dysfunction called anismus.
I ended up as you can see having emergency surgery almost 3 weeks ago and have a loop ileostomy. NO I have not been constipated since. I have had a heap of toher issues, infection and pain and nause, but these are all symptoms that not everyone gets......I am not going to lie....since it being emergent aftera 7 day long obstruction with no resolution I have had a very hard time emotionally, but if you were prepared I think you would deal better. Its amazing what would be inside of me and I am not eating very much at all.....and all of it would be stuck inside me.
I am going to Cleveland Clinic as a new pt to get consulted for a k-pouch....its internalizing like a j-pouch, but for people who do not have control of their rectum or cannot use theirs like me. I go May 27. I like, you had a scop with no problems, more laxatives, biofeedback, and botox all of which I think you have.......
I had an open surgery and spent 16 days inpatient, but I had complications. I wish you the best and I know how you feel. Its scary to think of an ileostomy, but as they told me, without it I would not be alive right now.
Any other questions, let me know.
A j-ppouch, i believe is a two to three surgical procedure, but you have to have function of your rectum muscles. I beliebe its firsta temp ileo, then either creation of puch and recconect to rectum or otherwise a third step. I go to Cleveland on May 27 for a consultation with Dr. Remzi, ans understudy of Dr. FAzio, whom I have geard was the best but is unfortunately sick.
I am getting a consulatation for a conversion of my loop ileostomy to k-pouch (aka kock, or koch pouch). With this they take about two feet of your small intestine and create an internal resevoir to hold the waste. Then after time (i believe is a 13-21) day hospital stay with an indwelling catheter in pouch. They close the stoma, like mine and make a button hole stoma or inscision that is flush with skin (does not stick out at all) and then after the pouch is stretched ( i think about 6 weeks) and you are healed you empty with a catheter 2-4 times a day with some irrigation. All you have to keep over the opening is a small adhesive bandage and they can place this very low. They create a valve, also out of your small intestine which is how the stool does not leak....just natural mucous and this acts as a lubricant for catheter. The biggest complication is a slipped valve, but i believe its about 10%.
I am so sad and scared for you and am praying everyday. I wish you the best,
I hope you can get some peace out of this decision or porobable one and get an appt soon. Having an ileostomy is a life change, but you will not have constipation and just like any other surgery the pain eventually goes away. I wish you the best in all your decisions....I will pray for you....and I am thinking of you.
I wish I could give you a hug right now :( I am so sorry you are going through all of this. I understand the never wanting to deal with constipation as well as the insurance battles. Right now I am only approved for the surgery consult and then they will re-evaluate based on CC's decision. Just curious have you looked into the k-pouch. Yes, an ileostomy will give you a life of no constipation. I am only 3 weeks post-op, but besides my pain and nausea issues I have stool coming out all the time. For me, being emergent and having no time to process it I did not handle well. I have always had body image issues and this has made it ten fold, but I have to realize the surgery saved my life. I still want another opinion to see if I am a candiate for k-pouch, but that me and a lot of people can be ok and truly accept the "bag".
The surgery for me, was harder than the TC, but I had been in for almost a week prior with a major obstruction. I now have an open inscision and that was more painful to me than my lap TC. I told my hisband about you and he feels so bad....I never wnated this to happen to anyone else. I wish your TC would have been sucessful. You now, are the only one I can think of on here like me, but you had two years of good times....I had three months so I can imagine its even more frustrating for you.
If you do not want to fight with your insurance, dont, but I know you could get it approved and your doctor from CC could call as well. I had mine with my original surgeon who did my TC and he is local and amazing. Just make sure whomever does it is a colorectal surgeon if you stay within network. I was approved for consult within 1 week and did not have to fight too much this time.....but I know how tiring that is as well. I am praying for you and if you ever need anything email me personally, just tell me and I will get it to you somehow.
Hope you can sleep tonight,
I met my surgeon today, and he seems very knowledgable and really nice. He spent over a half an hour with my husband and I. He doesn't want to do an ileostomy just yet, because he says that I will still have constipation if my small intestine doesn't work. So, he's ordering a test to make sure that my small intestine still works. If it works, he said he'll schedule surgery for any day that I'm ready, but if my small intestine isn't working, he said we'd cross that bridge, but we'll try to know something before Friday afternoon. Needless to say, I cried for the poor man. Whenever I hear constipation, it just hits a nerve with me and I'm really frightened, too, to say the least. So, I'll wait some more, but I think that I'm in really good hands. My husband reassured me, too, that he felt that I had a really super doctor.
I emailed you.....I had a small bowel follow through....? not sure what they will do for you?