I need some good thoughts and prayers, please.

I just got out of the hospital, after a long week of agony.   

Honestly, I don't even know where to begin.  This was a week from hell.

As some of you know, I've had major problems with my stomach (intestines) for a long time, but things have definitely gotten worse.  Some of these things are kinda gross, so I'll refrain from giving some of the details, but I went into the hospital with severe pain and blood coming out of my rectum on Monday and just got out last night.

So, they gave me all these horrible tests, and it turns out that I definitely need some of my intestines taken out, and my rectum needs to be fixed.  They didn't give me good news about it, though, and I am very upset.  They told me that I need to think really hard about what I'll be able to live with, and talk with the surgeon about it.  They want me to have a few more tests, and then I will be back to see the surgeon.

I don't have very good options.  I was crying all week about it.  I have a rectal prolapse, so the surgeon said that it may be serving as a "cork" because I have no muscle left in my rectum.  So, if the prolapse is corrected, then I may end up being incontinent, where I have no bowel control what-so-ever. All I heard was him saying that I'd need to wear a diaper, and I almost passed out.   My intestines are redundant, and they are all over the place, so some of them need to be removed.  The only other option that I have, if I have the rectum fixed and want more control of my  bowels, is to have a permanent colostomy.  I am not happy about this.  I'm so sick about it.  I talked to another surgeon who said that he may just take some of the intestines out, and see how I feel after that, and maybe we can leave the rectum alone for now so that I will have bowel control.  If that doesn't work, then I will have to have the rectum fixed and have no control of my bowels ever again.   

Please everyone, I beg you, please think good thoughts and say some prayers for me, if possible.  I'd really appreciate it, with all my heart.  I'm only 30 years old, and have already gone though so much.  This is a very depressing time in my life, and I don't know how I'm going to deal with this.  I will give updates as to when I'm having surgery, and what the plan is.  Thanks, you guys. 

Dearest Danielle

I don't know what to say, i am so sorry to hear about all what you are passing through.  i know this is a very difficult situation, but i am sure that things will definetly change to better . Remember that you are strong and a fighter and have passed through very difficult situations and this will pass too.

A very important thing is that you have to visit several doctors and have many points of views as much as you can. Also this option[quote  I talked to another surgeon who said that he may just take some of the intestines out, and see how I feel after that, and maybe we can leave the rectum alone for now so that I will have bowel control.  [/quote][/i] is a good one and seems a conservative option that i would choose if i were you.

Please, try  to calm down and be sure that God does the best for us, it could have been something worse. Danielle, you are truely in my thoughts and prayers and i am sure that things will change to what will be suitable for you. Please keep us updated and i will do every possible research about this case. Wish i could be there beside you, please take care
Manal

{{{Danielle}}}  I'm so sorry you're having to go through this.  My mother in law had a redundant colon and had part of it removed when she had colon cancer.  She, too, was advised that she might come out of surgery with a colostomy, but that did not happen.  Her cancer and part of her redundant colon were removed and she has had no further issues.

I hope you fair as well as she did.  I agree with Manal; if it were me, I would go with the more conservative approach of the second surgeon.

Good luck and hugs to you.

Dear Danielle,
Im so sorry to hear of your health problems,you will be in my thought & prayers.I know you are a strong person & u are young u can get through this!
we are all here for you.Thinking of you.take care.

Danielle sweetheart,

plz be sure we all are with you,all our prayers are with you,i can't explain what i am feeling for you,i wish i knew english better,i always fail to express my emotions  ,plz be sure of urself and be strong,i know it's terrible,but remember morning always comes after night's darknss,you have kept your sanity while you were going through all this, this is the proof that you are a very strong person,i may have ended somewhere worst if i were you,but you are the best, i wish i can do something more then words,words can't heal what you are going through, but you are so far and away,i feel so helpless ,but i'll pray for you, this is the least i can do.and i am sorry for that.

 

ZAINI.

Oh, my sweet Danielle -   

I am so very sorry to hear of this development.  Be sure to know that you are in my prayers day and night - you have been such a HUGE support for me.  I wish I could sit down over coffee with you and just let you vent - I know how difficult the feelings are, when surgeons don't give you much options, etc.

That having been said, I am very upset that this is all the options that the docs in NYC are giving you.  There is a WONDERFUL doc/surgeon here in Syracuse named Dr. Jaswant Bal - he trained first in India (he is familiar with thal and the degenerating effects on the organs) and he is an OB/GYN and reproductive/ureter and colon surgeon.  He fixes bladders, colons, vaginal prolapses, rectal prolapses...you name it.  He helped a family friend of mine with a v. prolapse and bladder prolapse, and what he did so she maintained her bladder continence was: he took a piece of skin inside and actually "anchored" the bladder and v. canal into place.  She has perfect continence now, 6 mos post op.  Would you like his number? It wouldn't hurt to see if he might be able to anchor the colon to allow it to focus on maintaining continence rather than holding itself in place with its limited muscular capabilities.  Would you like his number? PM me if you'd like it.

All our love,
Courtenay, Karol, and Mychael

HI Danielle,

I agree completely with Courtenay that you should seek another opinion. There are other doctors that can do advanced procedures and you shouldn't be limited to your local surgeons if they aren't familiar with the newer techniques. Definitely check into it. Syracuse is not so far to travel and if the doctor there can keep your functions intact it is well worth the trip.

Take care Danielle, and know you have a ton of friends here pulling for you. 

Please Danielle, have the opinion of Courtenay's doctor. It seems that there are other options. As Courtenay said, it wouldn't harm. Good Luck

Manal

Dear Danielle,

Our prayers are with you. We are very upset at the news. Please take care of yourself and remember that people around the world are praying for you. We are looking forward to a happy Danielle soon.

PS. Please pay attention to Andy's advise about another opinion.

Regards.

Danielle,

I am so sad to read what you are going through!  My prayers are with you and hope and pray that the best case scenerio will be the case for you.  I hope you get another opinion and that you are given more favorable options.  You help everyone throught so much and you give us all such courage.  You are an inspiration and my prayers and good thoughts go out to you.      Sharmin

Thank you guys so much.  I really appreciate the kind words and prayers. 

I've been getting as many opinions as I can.  I've had problems with my stomach for a long time now, and was told a long time ago that I would most-likely need some of my intestines removed.  I guess it has come to that time now, where I cannot wait any longer, because things have gotten much worse over the past couple of weeks. 

To be honest, and I know this sounds crazy, but I want them to take some of my intestines out.  I've been wanting this for a long time now, because it has been causing me excruciating pain.  I cannot go to the bathroom anymore, and it's so painful.  Now, the prolapse is a different story.  If they fix the prolapse, then I will most-likely be incontinent, because I have absolutely no muscle left in my rectum, so even with new technology, they cannot do anything other than what was told to me.  There is no way to fix the muscle.  I've spoken to many great colon/rectal surgeons here in New York, and they all give me the same scenario.  If they can just remove some of my large intestine, then I may not have to go through all the pain that I go through anymore.  I'd rather have that done, and then maybe wait on the prolapse and see what happens. I know that this is a very serious surgery, and I may not do very well, but unfortunately it needs to be done.  My intestines are extremely redundant, and they are twisting and strangulating, causing me severe pain.  Nothing else can be done in that area, except to remove some.  I've been seeing doctors for this for very long time now, so I don't want it to seem like this just all happened when I was hospitalized.  It just became so much worse when I was hospitalized, because of the agony that I was in, and the bleeding.  So, trust in me that I am doing everything that I can, and my family is right beside me, fighting for the best treatment.  My mother will not rest until I get the best care possible, and neither will I.

I really appreciate everyone's good thoughts and kind words.  I will keep you updated on the situation.  I just need a few more tests done, and then I will be back to see the surgeon for another consult.

Courtenay, you can never have too many opinions, so I would really appreciate that number that you have.   Thank you so much hun. 

I love you all.  Thank you for being there for me.  Sometimes I make the mistake of not filling you guys in on my life, because I just want to help everyone else, and not bother anyone with my problems.  So, when I finally post about something, it's usually when a severe situation has resulted, from an ongoing problem.  I have had so many things going on with me and my health, but I don't like burdening anyone.  I really appreciate all of you being there for me, though.  I will try to talk about things more.  I spoke with Andy about this a while ago.  He kept reminding me that we have such a great place here to vent and talk, that I should utilize, but I told him about the problem that I have with burdening others with my problems and it's hard for me.  For that, I'm truly sorry.  I just care about you guys so much, and I know you all have your own problems to deal with.   

I'll let you guys know what happens.  I love you all. 

Danielle,

You definitely need to get the excess intestines removed ASAP. See what happens after and how well things heal up. Wait awhile on the other decision until you've had some time to research it more and talk to other doctors. It's worth waiting to see if anything changes on its own after the surgery.

Danielle, we have such a wonderful, caring group of people here, who give so much of themselves even when confronted with huge problems themselves. Please don't ever feel that your burdening us with your troubles. It's why we're here. Knowing you have people makes so much difference.

From all of us 


You got my cell # so keep me updated as much as possible. We'll all be praying for you.

Hi Daniel,
It is sad to hear about your ordeal and it must be very painfull to be in your situation.I am so glad your parents are supporting you  and we are all wishing for an effective solution .
One of my option to you is to consider every aspect and possibities, before you opt for the removal of your large colon.
We are all here for you for support ,sometimes when we think we can't bare any more pain we surprise ourselves with our own strength."Having said that" I think you are the strongest of us all .
Don't Panic, you are young full of hopes and dreams  and you will get better,Keep faith .
I 'm Praying for you and all of us.
Kind thoughts 
Kathy

Please don't ever feel that your burdening us with your troubles. It's why we're here. Knowing you have people makes so much difference.

Manal

Hi Danielle,

We are all by your side.  You have been through so much as you have said, but this is yet another challenge.  Do not be disheartened.  Take courage and consult as many specialist doctors as possible before you take an informed decision.  May the decision that you take be the best one.

I believe that taking ladyfingers everyday may help you(ease your going to the bathroom).  But of course before taking these, ensure that you are not allergic to that vegetable and that it would not harm you.

Keep us posted.  Never think that you are burdening us.  Share your problems whenever you feel like it. We would be here for you.

Take care.
Jade