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Posted 4/8/2010 11:20 PM (GMT 0)
Judy  Hey girl, ya I ment before the surgery about the constipation...Your right I am not going to just eat what I want I will stick to the low-residue diet like you said...  I have had it with stuff going wrong so won't jepordize it...peace and good health to you too honey..

Leslie

Posted 4/8/2010 11:52 PM (GMT 0)
Re: Food Obstruction behind stoma. I had a food obstruction 2 years after getting my ileostomy. Mashed potato was the culprit. It's never too late to get one. I melted it down with LOTS of hot tea and walking. If I were you I would just go bland. Who wants to chance all this obstruction business. Just my opinion. Everyone is different.

Lizzie,

Peltz could be right. Your pouch issues may be from your systemic swelling likely the RA. Once that is under control maybe your pouch will continue to function well as it did for so many weeks post surgery. I talked to my hair dresser, a young woman who got hit with RA at 29 right out of the blue just like you. She had IV's of Remicaid every 6-8 weeks and her RA is very well controlled. It is $2,000 per infusion but insurance covers it. You should ask your doc about this and give it a try. You can't be put off as you have these 2 issues to deal with. They can't just ignore you this time as you will obstruct if you can't intubate. If the RA is the culprit then why would they not want their internal pouch to be a success. If you get any grief from them, lay this logic on them.
Good luck, Rosemary
Posted 4/9/2010 12:03 AM (GMT 0)
Judy, I haven't posted in awhile.  I have been hospitalized for depression, and I'm really scared about my upcoming surgery.

 

Anyhow, I read one of your posts and you spoke about stents and I wondered if you could tell me a bit more about them.  When my colorectal surgeon redoes my ileostomy surgery, he said that he will have a urologist in the surgery with him to put stents in.  I am unsure what this means for me.  I've never read or heard about it until I saw your posting. 

 

I would really appreciate anything that you can tell me.

 

Lori

Posted 4/9/2010 12:20 AM (GMT 0)
UPDATE:

I can barely type this....my worst fesr came true. My valve has slipped and although I knew it  was a great possibility I did not expect it and have been crying for over 6 hours. I am scheduled for surgery admite for pre-op May 6 and open major surgery May 7. He has no idea why it happened, but believes I am still a good candidate and does not think going for the ileo is what I need to do yet. We will see what happend with this valve and go from there. I knew I had a 25% chance, but I did not think it was it....I cried the whole time....he scoped me after I got the tube in when he couldnt and the pouch looks great and then he pulled up to the valve and in less than 30 sec said "Its a slipped valve" and immediately tears flooded down my face. I cannot stop crying. For now they put a huge tube in with a ballon to keep it open until my surgery....it was very painful and I am just trying to get comfotable and trying not to lose it.....I feel a nervous breakdown coming after just feeling ok. He was confident in trying again and said there was no reason it happened or not or if it will again, but fifth open surgery....same intensity he said just without the rectum removal thank God. I do not know where to go with my emotions....

On top of this my parents are gone and my older sister has suffered with frug addiction for over fifteen yrs, just this week her best guy friend OD on her couch and she found him dead. She had just gotten custody of her son who is almost three after a yr of proving to the court she was clean and had a stable home. CPS was called by the parents of her dead friend and poor Charlie is with a foster family until we can ger him or my parents get back. She has attempted suicide and instead of going to the hearing yesterday to get him back clean and ready she went in 45 min late after the hearing was over (my youger sister was there trying to get Charlie as Adam and I were in CC and my parents in FL) and she showed up messed up. She tried to use a baloon of piss and the nurse hear dit pop so they testd her and she was pos. for coke, meth, and serious level of benzo's/ She will never get her son back now.....poor guy has to be so scared. She took 30 ambien today and is blamng everyone but herself. Its been a horrible week....I do not know how much more I can handle.....i think I am on the verge of being admitted for insanity.

Just wanted you to know....love you.

Lizzie

Posted 4/9/2010 12:30 AM (GMT 0)
Butterfly,

Sooooo sorry about your depression. Judy can fill you in on the stents. BUT in the meantime, have you spoken to your ileostomy surgeon who wrote the doom and gloom letter and told him you had to be hospitalized for depression following the receipt of his letter? There has got to be a way to resolve this before you enter into that surgery. If you go in depressed this won't be good. I never did believe in the mind body connection, but it is there and it surpasses all of us. It's a strong force beyond what we realize.

Can you hire or enlist the help of friends, neighbors, attorneys, people to help you wade through all the disability applications you were working on? Also ask at the medical center if there is a patient advocate (there is as all the centers have one). Tell her of your issue and upcoming surgery and what you have been through since receiving that STUPID letter your surgeon-to-be wrote you. (I am sorry to be so blunt, but the guy was covering his a-- but he severely set you up for depression.) Can you have a team meeting with you, your husband, the advocate, the surgeon, your depression doctor, and anyone else you can recruit? And really get at the bottom of that letter. Had I received that I would have simply walked. You are in a situation where you are feeling trapped and that there is no way out, that was what happened and threw you into the depression. To stay out of that, and pull yourself up, you have got to become pro-active rather than be the passive recipient of the doom letter. This I know is easier said than done when you are obviously not at your strongest and are dependent on that surgeon. BUT my idea is to help you enter that surgery more confidently.

Please, please forgive me if I am out of line, here. This just pisses me off soooooooooo much. These docs (even America's BEST) will stop at nothing to cover their's without regard as to what it does to you. I KNOW my ileo surgeon HAD to have been skeptical going into surgery to remove the dense adhesions off my small intestine and make me an ileostomy. BUT in no way did he express anything except, "Here's what needs to be done and I can help you." In his own mind he was likely thinking God help us both, but he certainly did not say it. Keep in mind 10 other of america's top colorectal docs had chalked my case off as too dangerous to deal with when my ileo surgeon stepped in. So, risky surgery by the right doc who is CONFIDENT in what he is doing, can be done without throwing the patient into depression. I entered surgery very happy and excited about having my life saved, survived a month of post-op ileus, and am now booking my 8th cruise and sending the ileo doc post cards. There are no guarantees for any of us, but I strongly believe your pre-op information could have been handled much better and that it needs to be reframed before you enter surgery. You were given a raw deal and I am praying for you to stay strong, get proactive, and do well.

Sincerely, Rosemary
Posted 4/9/2010 12:41 AM (GMT 0)
Lizzie,

OMG! I FEEL SO BAD FOR YOU!!!!!!!!!!! So do you have RA AND the slipped valve? If surgeon does not know why it slipped, does he know what to do to prevent another slippage? I do not mean to be adding to your worries at all, however, you need to ask him this. I'm so worried for you. Even though you have youth on your side there is a limit to human endurance. Regardless of what HE thinks, do YOU feel that you want to try the pouch/valve again or are you ready to surrender to a correctly made ileostomy stoma, regain strength, and just be on with your life? A correctly made ileo is not the end of the world.

I know you just posted and likely don't need me barraging you with more questions, but how much more do you personally think you can stand of this? It sounds from your post that what you have done HAS to work as you are quite understandably at the end of your rope.

Butterfly is in similar emotions as you. I hope I did not over-step my bounds on either of my replies, but I just want you guys to be well and free of all this garbage and able to move on with life however you have to do it.

All my prayers to you and your family. I feel so bad for you. And "poor" me just can't eat mashed potatoes anymore. I gotta suck it up and count my blessings I'm as well as I am.

My heart goes out to you. Love, Rosemary (Mother Hen)
Posted 4/9/2010 2:31 AM (GMT 0)
Lizzie  My dear, that is just awful what you have had to go through and are still going through.  My prayers are with you.  As for the addicted one, they have to help thereselves first and want help, its a up-hill battle...  Just try and concentrate on yourself and getting better, you don't need to be stressing about other people's problems, you health depends on it..  please take care..  Praying for all of you.

Leslie

Posted 4/9/2010 2:51 AM (GMT 0)
Lizzie,

What Leslie said about the addicted one is so true. I understand why this adds to your stress as there is a child involved, but Leslie is right, you need all of your energy now for you. Rosemary
Posted 4/9/2010 1:39 PM (GMT 0)
Lizzie, dear one, please concentrate on yourself as Leslie and Rosemary have encouraged you. I am surely praying for you. I know nothing about slipped valves but will do some reading so that I can better understand what you are suffering.

Butterfly - My husband is bipolar and has had terrible episodes of depression so I understand just a little bit what you are going through. By no means do I know what that terrible depression actually feels like but have seen it's effects. Praying for you too as well as all the others here.

(((gentle hugs)))

val
Posted 4/9/2010 1:41 PM (GMT 0)
Who wants to go with me this morning? I need a backbone to face the doctor - I am going to ask him for a referral to see a surgeon. If he doesn't give me one I'll go back to my pcp and ask for a referral to another gastro doctor. At least those are my plans.
Posted 4/9/2010 2:30 PM (GMT 0)
Oh Lizzie, I am so sad for you. How could this be happening? And another BIG surgery? OMG, I don't know what to say. My doctor did tell me there is a 60% chance of having issues with the internal ileostomy. He told me he does not recommend that I have one??? But, he did tell me he thinks more people have issues with the bcir than the k-pouch. I just hope this surgery works and keeps on working. What did your husband say? How is your joint pain? And about your sister. WOW! Drug addiction is just terrible.

Valda, you need to see a colorectal surgeon....I don't think gastro doctors perform major surgeries.

I have my defogram scheduled for the 20th. UGH, I really dread this test, but am really hoping they can see what the problem is and that the problem can be "fixed" fairly easy. Is that too much to ask? I tried the senokot-s for several days....NOT GOOD! It caused intense stomach cramps, but, did not make me "go"> What is up with that?
Posted 4/9/2010 3:41 PM (GMT 0)

Val-Be strong and ask for the referral; know that it is your right to see a dr and if he doesn't give you one then get your records from him & get a referral from your PCP to see a surgeon.

I wish you the best and am praying for you!

Lizzie-So,so sad that you are facing another major surgery but if anyone can handle it girl, it's you!  You are the strongest person I know; you can and will get through this.  Keep up this fight and know that I am always praying for you and I love you.

I know this is bad to say but you really have to disconnect yourself from everything else that is going on right now, that is the only way you will be able to be strong enough to survive yet another surgery.

Lori-Did the dr tell you why you need stents and if you need more than one?  A stent is when they put a long plastic tube like structure into your ureter to keep the tube open so that urine flows through.  Most stents are about 12 inches long and have quarter size rings on each end, they vary grately in depth though.  If you have a small stent supposedly it won't bother you but I have talked to anyone that it hasn't bothered.  Did they say how long you would have to have the stents in?  They can and should give you spasm meds.  Let me know if you have any more questions.  You can also click on the first icon under my screen name to get my email address and email with any questions.

Peace and prayers to all,

Judy

Posted 4/9/2010 4:09 PM (GMT 0)
Val,

Here is your backbone to deal with these docs. Wish this had occurred to me LONG ago.

YOU ARE THEIR INCOME. YOU ARE THE PAYING CUSTOMER. YOU ARE HIRING THEM TO GIVE YOU WHAT YOU NEED. WIthout you and their other patients they are out of business.

Just reframing it in this way, hopefully will be of a help to you.

Hope my 2 cents helps.

Lizzie,

Hang in! If you are at the point where you cannot keep going on and on with this, say to your surgeon, "what can you do for me that has the BEST % chance of working so that I can take in food, absorb nutrients, and pass waste?" When phrased this way, it will occur to any doc that all you are demanding is basic life processes.

Good luck, Rosemary
Posted 4/9/2010 6:34 PM (GMT 0)
Thanks ladies!! Sending you big hugs! This morning the gastro doctor wanted me to try another med (something I had never heard of) but I told him I wanted and needed surgery. So he is referring me to Cedar Sinai in Los Angeles. That's maybe two and a half to three hours south of where we live. They will contact me with more information. Hey, having a back bone isn't as hard as I thought. :)
Posted 4/9/2010 7:53 PM (GMT 0)
Lizzie,

I know the internal pouch thing and the possible complications from my originally planned bladder suregry that has never been performed so far since the chief doc did not allow it fearing a damage to his excellent reputation in case of an only fair outcome I would still appreciate.

The method is the same as with the intestinal pouch.
I know that ther is a pretty high reoperation rate for valve problems due to incontince, slippages etc. However, after this correction most patients are very content and have no issues with the pouch at all afterwards.

I continue to see a possible connection between your RA/possible connective tissue disease/tissue swelling and the pouch problems. THis should be ruled out before you undergo the correction surgery. I don't think it is the pouch per se causing your issues though your RA does make you more prone to have such problems.
Posted 4/9/2010 9:07 PM (GMT 0)
Lizzie,

What if Peltz is right and the issue is the RA? Can you ask your doc if swelling from RA could mimic the signs of a valve slippage? It's a shot in the dark, but she could be right. Ask your doc. Rosemary
Posted 4/9/2010 9:19 PM (GMT 0)
Lizzie,
Honey I am so very sorry. I am sitting here almost in tears because I know how scared, frustrated and just sick and tired of all this you must be. In addition, now you have the worry of your sister and your nephew. I hope your parents get back soon and can be there for you and your nephew. Like everyone else has said, as much as you worry about your sis and her son, you have to concentrate on yourself right now. I hope that between now and May 7 you are able to get stronger for your surgery. Bless your heart, I'm so sorry sweetie!

Lori,
I can only imagine how down and scared you are as well. I don't think you've answered whether you have been able to talk to Dr. Wexler about his letter. While I agree with Rosemary completely about getting another opinion, I also understand that when you're already feeling weak and tired and scared you don't feel like making the effort to do that. If you haven't spoken with Dr. Wexler, I would definitely try to, and if you have and don't feel any better about things, I would get the help of my husband, friends, anyone at all who would help and get that second opinion. You definitely want a Dr. who has a positive attitude working on you.

Several years ago my best friend was diagnosed with pancreatic cancer and 2 years after surgery and chemo, it had spread to her liver. She went to several doctors who basically told her to get her affairs in order, but she felt good and wanted a liver transplant. Dr. after Dr. told her they don't do liver transplants on patients with mets to other organs, they would only do a transplant if the cancer had originated in the liver. My friend was 42 years old and wasn't ready to die. Finally she found a Dr. at Mayo Clinic in Jacksonville who agreed to give her a liver transplant. She died a few years ago, but she had an extra 5 years, enough to see her daughter graduate high school and her son get married.

I'm only telling you this as another example of how there are doctors out there who really want to help you, regardless of what the statistics are. Rosemary was fortunate enough to find one, and my friend was as well. It may take time and effort to find them, but they are out there. If you have a little time and don't have to have your surgery right away, you may feel much better about things by seeing some other doctors and getting more opinions. Another doctor may have a more positive attitude, which would give you a much more positive attitude. Whatever you do, I wish you the best.

Pelztier,
You are one smart girl and we all appreciate your knowledge. I'm sorry you had to spend Easter in the hospital, I hope you're feeling much better now.

Val, congratulations! I'm proud of you. Am anxious to hear what you find out next.

Everyone else.....hope everyone has a nice weekend.

Janie
Posted 4/10/2010 9:38 PM (GMT 0)
Hey girls?? I received a text from Lizzie about 12AM this morning. She wanted me to let you all know that she will most likely be flown to Cleveland. I am so worried about her. She looks so terribly thin. I am so tempted to get on a plane and go see her. I just feel so helpless. I have not even met her in person but I love her so much. Lets all please remember her in our prayers. She has always been there for us and I will always be here for her.

Today is my birthday! #33. I took my kids to the pro rodeo this afternoon and will be going back with my hubby this evening. So much fun. Then maybe out for some drinks which I have not had since my surgery. Any one know how that is on us?? Just do not want to get sick.

OH.........thanx Janie and Judy for accepting me. I just love you two so much. It is so weird that we have such a bond and have never met.

Val, I also had a doctor that wanted me to try so many meds. I finally just had enough of it and told him that I was not going to try any more. This went on for six months until he finally agreed to surgery. You have to be stern or they will not listen to you. My doctor said he only does 1-2 of these surgeries a year and he does not like to do them. But, that in my case there was absolutly no way around it. I go see him on Tuesday and hopefully I will be cleared to completly resume all of my reckless activities.

Please, please remember Lizzie in all of our church prayers and personal prayers!! Love you all
Posted 4/10/2010 9:42 PM (GMT 0)
Marisa  Hey girl thanks for the up-date on Lizzie, that poor woman has been through the ringer.  Hope she gets the help she needs so desperately..

And girl I am sure the doc will clear you to get into as much trouble as you want...LOL

HAPPY BIRTHDAY....YOUNGSTER....smilewinkgrin

Posted 4/10/2010 9:51 PM (GMT 0)
Marisa,

Thanks for the update on Lizzie. I was wondering how she was going to last until May 7th. She likely went on a medical plane that Cleveland Clinic has like the one I flew on to Mayo Clinic. It costs about $13,000 but she needs it and insurance covers it. Comes with nurses, emt's, NG tubes etc. THANK GOD they are taking her seriously and not making her wait a month. Hopefully they can also get that RA or antibiotic joint pain whichever it is under control. I will pray for her. Thanks again.

Rosemary
Posted 4/11/2010 12:42 AM (GMT 0)
i just wanted to add that it would be possible to have biopsies of the bowel tthtcan be tested for a possible occurence of a connective tissue disorder. if surgery should be performed there would be a good chance to collect tissue samples from the pouch. Full thickness biopies can also provide information about possiblenerval and/or muscle degenerations which can be the underlying cause for intestinal dysmotility.
Posted 4/11/2010 1:25 AM (GMT 0)
Yikes! Pooooor Lizzie. I hope they think to take the tissue samples. RJ
Posted 4/11/2010 2:12 AM (GMT 0)
UPDATE FROM LIZZIE:

I called Cleveland Clinic around dinner time to see how Lizzie was. They did connect me to her room, but she was busy, so they left her my number.

She just called me back. She naturally sounded quite weak and had just received pain killer, but was quite coherent and I thanked her for returning my call.

She said they had put contrast into the pouch to see if it had ruptured or if it had a leak and they found that neither of those things had happened. That was the good news.

The bad news is that it's now been 29 hours with no output and now the contrast is also in there and is apparently not coming out. They are just trying to keep her comfortable with dilaudid. Her surgeon is either out of the country or on his way out of the country. So in the morning, his associate is going to come in and talk about repairing the valve. This would involve a full open incision, but the actual repair of the valve itself, it sounded like would be do-able.

I asked if they thought they might just need to go to a straight ileostomy and I reminded her that with the stoma made correctly it is manageable. She said if they tried to fix the valve and it could not be fixed, she would be open to whatever had to be done. I could not really tell from our brief conversation what the timeline would be on all this and I don't think she knew.

I forgot to ask her about what they thought about the possible RA as she sounded pretty weak and I didn't want to tax her by keeping her on the phone. The poor girl sounded so tired. But it was so nice to speak with her. Tracy and I have been in touch and Lizzie text messages Tracy. So we will all update as we can. I told Liz all our prayers are with her. (Sure hope nothing bad happens to her tonight with all that stuff in her AND the contrast, but at least she is there at CC and not suffering at home.) So presumably if something happened they would recognize it and do what needed to be done.

I was talking to Tracy on the phone and we were saying how good it would be if we could all just go to CC and meet her and be there for her. But she knows we are thinking of her.

Rosemary (Mother Hen doing her mothering)
Posted 4/11/2010 2:17 AM (GMT 0)
Rosemary

  Thanks for the up-date.  Poor girl is so ill I am just happy that she is there and will be able to be taken care of instead of being home alone and scared...Many prayers for her to get what she needs and that she has a speedy recovery..  Good for you rosemary for calling...

Leslie

Posted 4/11/2010 2:29 AM (GMT 0)

Happy Birthday Marisa!!!smilewinkgrin Hope you had a great time and enjoyed yourself!!  I haven't been able to drink since my surgery but then again I was never one to drink anyway; hope you at least had one if you wanted.  This site has surely turned many of us extremely close that yes,  many of us are closer to the people on here than to our own family members; that's because we share such a close bond and we are truly always here for each other.  We all know what each other is truly going through and we are always here to support one another through our disappointments and our accomplishments. When people go through chronic physical and/or emotional turmoil, God gives them the strength to reach out to others to help nurture and pass on that strength and courage.  This is the only way we have all gotten as far as we have and how we have come to know and rely on each other.  I thank God everyday for all of you; that is, after I pray for your healing and strength.

Thank you for the update on Lizzie; I truly didn't know how she could wait until May.  I pray  that she is getting the right help and very soon!

I'll probably read again tomorrow to see what's going on with everyone, then it's back to work on Monday so I don't know when I will be back on.  I'm going to try to work but if it proves to be too much then I'm going to take leave without pay until the 29th when I get the stent removed.  I really hate the thoughts of that, it's not that we can't afford it, but I hate the thoughts of giving in to my body, but I don't know if I can handle this extra large stent with my extra needy class.  I hope I can stay working though because it really messes them up to have a sub for just a day, they love to have everything consistent. 

Peace and prayers to all,

Judy

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