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WRNING: Sorry for spelling up front, very hard to concentrate, so much pain.
It's been a long time since I have posted here; but always come here all the time. In fact, some of you, I feel like I personally know you, lol. It has been a long road for me. I had my 2 surgeries back in 2009 and had problems ever since. In 2010, I was forced to go on disability and was bed ridden ever since. After 3 hospitals, continuation going to the ER with no real help: I finally said I would go to the best and get an appointment with Dr. Shen @ the Cleveland Clinic. Thank goodness, I now have Medicare, lol.

After my appointment with Dr. Shen (what a great doctor); he stated that my jpouch was wrong from the beginning. He told me to take a picture, as he drew on the blackboard. Boy, what problems I had. All the small town doctors didn't even know what a jpouch was. They always asked for me to show them my "j-tube", "j-bag", etc. Always explaining to them, it is inside me. Anyway...as I babble on... Here is what Dr. Shen says was wrong:
1. Long cuff/rectum: Dr. Shibato @ Moffit Cancer Center in Tampa, kept too much of a rectum for a FAP patient
2. Leak sinus
3. Prolapse
4. Dilated pouch: Had to dilate 3x this year alone
5. Low grade dysplasia
Also, had C diff.

He said that the only way was to remove my jpouch and choose between going for perm end loop; new jpouch, or kpouch. Originally, I was interested in Kpouch because I was tired of jpouch and the misery, but Dr. Dietz recommended new jpouch and said that Kpouch has a 20% failure rate. He was really determined for me to try jpouch again. Dr. Shen wanted to do 3-part surgery, while Dr. Dietz thinks he can do it in 2-part.

Now just trying to survive until next week. Had to go to local ER 2 weeks ago, and they basically threw me out within a few hours. That is another story by itself. CC told me I should have gone there for ER, which is 12 hours away. I have been in so much pain, the worse ever. My stomach is always makes this extremely loud sound like a lion growling. Every time it does it, my abdominal hurts so bad that even starts giving me back pain. When I went to the ER, I had been up for 3 days straight because of the pain, and took me 7 days before I could have a bowl movement.

Anyway to make a long story short (ironic, lol) I am off to CC on 7/9 (day after my birthday). I am hoping that this is my birthday present, and after 4 years, that I will have a successful 1st surgery on 7/12. Hopefully, I will be able to work again and want be stuck on a bed for the rest of my life. Any one ever had a successful civil lawsuit on a situation like this? This has caused so much problems for many of my family members. We have had so much financial issues that it has caused to family members bankruptcy. I'm sure many could relate.

Kinda scared about doing surgery again, but figured this might be a piece of cake from so much pain I have gone through. I have read many of your stories and especially followed Vanessa's story and blog. I hope I meet some of you when I am there again. I will be staying at the Guest House.

Any advice will be helpful. I am having a jpouch removed and temp ileo for first surgery. How is traveling after surgery? One thing that I do love is how I fell in love with Ohio. Amish country; German restauants. Cleveland has such a melting pot of food. Love the Korean and Asian markets there. The restaruants at the Intercontal Hotel is awesome too. Risotto on their buffet, yum.
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Deleted your other post, Marius, no problem.

I am so sorry that you have been having such a difficult time with your j-pouch. I am sure it is no consolation to be in the minority who have failed pouches. But, you could not be in better hands, I think, and it seems that Dr. Shen got to the bottom of your chronic issues very quickly. I hope that all goes well with the redo and you can begin to live your life again.

Jan Smiler
I would just put all those past issues behind and pretend this is the first time you are having surgery to create your jpouch and go into it with a positive attitude. I've seeked legal advise for the terrible treatment I received in the hospital and even the radiologist not following my surgeons orders to keep a drain in for my infection and he removed it so I had to get a repeat procedure to leave a drain in the next time around. They even fired the staff the day after. I also had pictures of how unsanitary the place was and all the pain and suffering I went through due to the incompetence of the staff. The lawyer advised me that this stuff happens all the time and even gave me examples of cases that were worse than mine that he thought would be a slam dunk that they lost. The the lawyers I'm speaking of are the best around my area. These Drs and hospitals are so protected that you have no chance because a while ago people sued the hell out of them for medical malpractice like crazy. I'm not trying to discourage you but I went to this lawyer with what I thought was enough firepower to put the hospital out of business and was told he wouldn't even risk putting down the money to take the case. You can certainly try if you think you have a case but just don't go into it with high hopes because that's what I did.

Anyway it seems like you have been through a lot of uncomfortable days in the past years and now is your time to get better and enjoy life like you originally planned. Believe and things will fall into place. Good luck my friend. You will be just fine I'm sure.
Thank you everyone for the great advice and encouragements!! I hope everyone had a great 4th. I feel conformable being in the hands of the Cleveland Clinic. The staff is great there. Dr. Bo Shen is so down to the earth and boosts with confidence. Dr. Dietz is great and directly to the point. Haha, I'm making up my naughty food lists to eat now over the weekend, since I know I will be even more restrictive for a little bit soon. Even if I endure a little pain, lol.

Yes, I figure as much about a lawsuit. Thanks for the advice. I knew it probably wouldn't go anywhere. I'm probably just going to double check on a consultation and probably not pursue any further.

I hope everyone has a great weekend!!
Well, I had the surgery, but I even shocked Dr. Dietz. All he could do was open me up and and then sew me back up. Find out more tomorrow; but it's too late for chemo or radiation. FAP has a brother and I have a massive tumor growing in around the back area and in small intestine. They are not sure if it is cancer, but Dr. Dietz says that for them to do any type of surgery, that I wouldn't make it. I will find out what time table I have left, but looking at a few short weeks left to live. I should have more information tomorrow. We are all in shock. I feel at peace and I am trying to comfort my family. I'm bleeding a lot in my small intestine. The NG Tube was nothing but blood coming out.

All we need now is a miracle. I'm just going to spend as much time as I can with my son. I pray that there will be a change tomorrow and maybe a miracle. Just wanted to give everyone an update.
Oh my gosh, what a terrible turn of events this is! It sounds like an aggressive desmoid, every FAP patient's nightmare. For Dr. Dietz and Dr. Shen to be caught completely off guard, there must not have been any indications.

I am so sorry that you not only could not have your planned surgery, but that you also recieved this awful news. I will pray and send as much healing vibes to you that I can muster. My heart goes out to you and your family.

Jan Frowner
Hi everyone!!

Wanted to give everyone an update. Also, thanks for all the prayers and positive energy waves sent my way. What is funny, is all the doctors,nurses, and staff know all about me here at the Cleveland Clinic. I am they're big star. Main thing is because they still do not know what type of tumor that it is or still if it is a desmoid tumor. It is an alien, lol. By the way, I am a Christian, and I am OK with everything. I am at peace, have a positive attitude (most of the time) and have lived a great life, regardless of whatever the outcome is. Thank you again everyone; you all are the best!!

OK, so let me give a better explanation of what is going on and hopefully it will make more sense:

So originally on July 12; Dr. Deitz was supposed to give me just an ileo bag for stage 1 and allow the old j-pouch to stay in place and just let the obstruction and other issues hopefully settle down. Stage 2 was supposed to have the old jpouch removed and new jpouch be made and put in and hooked up, unless it needed to be a stage 3. That was the original plan...

Instead what happened was... he made an incession that went from my belly button to my waist line and had to sew me back up. What he found was a large and hard tumor that was about a couple inches from my spinal back area. He said it posssible could be a desmoid tumor. The problem was that he could not do a biopsy because it was too big and other organs(possibly small intestines was wrapped around this tumor). They did a ct scan to see if there was anyway that they could get to this tumor. They called on Dr. Church and still didn't know what to do. They were all puzzled. They said that radiation couldn't be done and possibly chemo originally. But with the council of other doctors they confirmed that with organs wrapped around this tumor that trying to go for a biopsy I would bleed to death. Doing chemo would risk making the organs wrapped around this tumor go bad. Hope that makes somewhat sense. All the doctors said they have never had this happened before, never have seen a tumor like this.

So this is what they have done and with my decision on it. They have given me a PEG (feeding tube) that hooks up to my stomach. I am feeding on TPN which the dietitian said would be a long time. I can have liquid and such, but nothing solid, of course. Last night they have placed a Hickman in me because all my veins kept blowing up because of all the TPN going in my veins. I should be leaving later this week going to a skilled nursing facility that does TPN, so I can be close to my son. Case management is helping me with that. That will be somewhere in Orlando, FL. Good news is that my insurance with Medicare being secondary pays for all of this 100%. All my deductibles and out of pocket has been met. So that is a true blessing. If it comes down to a hospice then that is paid for too.

In the meantime, hopefully the tumor possibly could shrink(we hope); especially if it is not a desmoid, and finally can get a biopsy. The old jpouch is still there and maybe the 4 old obstructions will go away. And with CT scans, they might be able to do surgery. Until then, I will just have to live with the feeding tube and adjust. It is much easier to clean than an ileo, lol. Worst case scenario is if the tumor causes the arteries to bust, because it is close to them and it did grow to the point to why I have been having so much back pain. It is kind of like a black hole and sucks everything to it. I do believe in miracles and have faith, so I am praying that this can all be turned around and I will have a huge testimony.

Sorry for this being so long, but wanted to explain it better in detail and I hope this makes more sense. Thank you everyone!!

Sean
Appreciate the update Sean. Sorry you are still in somewhat of a limbo situation, but one day at a time, eh?

With all the collective energy of everyone here and your supportive family and network of medical practitioners all your bases are covered. It sounds like you have a good plan for now.

Best wishes for you and your family,

Jan Smiler

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