I'm back from Cleveland Clinic

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lasbutterfly
Regular Member


Date Joined Nov 2007
Total Posts : 281
   Posted 12/2/2009 1:41 PM (GMT -6)   
I saw Dr. Wexner on Monday and he felt my abdomen and said that my small intestines were still in a knotted mass and need time to heal.
 
I am supposed to do 4 tests and see him again in March.  The imagery tests are:
  • fistulagram through tube
  • gastrograffin enema
  • upper gi small bowel follow through and
  • ct scan abdomen and pelvis with oral & iv & rectal contrast.

Depending on my rate of healing, I may be able to have surgery for my ileostomy in June (1 year from previous surgery), if ever.

I was very discouraged, because I was under the impression that I may be ready for surgery.  Every 2 weeks my sutures have been coming out and I've had to have them resutured to my abdomen and the tube.  It's very uncomfortable and I've been taking pain pills to withstand the pain.  It's going to be very difficult to wait through another 6 months of this.

butterfly


Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 12/3/2009 9:23 AM (GMT -6)   
Lori,
I'm SO sory to hear this.  I know you must be so disappointed.  Did Dr. Wexler have any idea what made your intestines go into a knot in the first place?  You were doing well for so long; it just seems so strange to me that would happen after a year or more.
 
As disappointing as this is, did he feel like you would most likely be able to have it changed?  I've never even heard of an iliestomy like you have and I know it must be so miserable.  I'm so sorry!
 
Hugs,
Janie

XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 12/3/2009 4:01 PM (GMT -6)   

Lori-

I am so sorry honey.....I know you were hoping for better news, we all were. I cannot understand why your small intestine is so knotted? and how could he just feel this with palpation? I cant imagine having to go through the pain anf frustration and my prayers are with you. Its hard enough adjusting to a standard ileostomy. I am thinking of you. Are you not having any of these test suntil March???

Keep me posted. Love you.

Lizzie


Chronic Lifetime Constipation, Dx IBS-C for 7 yrs
Diagnosed Colonic Inertia-Oct 2007
Total Colectomy with ileorectal anastamosis- Jan 28, 2008
Ileus with suspected leak- Feb 1, 2008, ended with four abdomal abscessses and 2 drains
Diagnosed with small bowel Fistula- March 6 2008
Drains removed- End of March 2008
Continued Constipation- biofeedback for 3 mo Aug 2008, Dx Rectal Inertia (Anismus)
Admitted with Small Bowel Obstruction April 4, 2009 and emergency ileostomy 4/13
Re-admitted with abdominal abscess. Released 4/24
Cleveland Clinic twice for 3/4th referral. Anismus undetected (no medical explanation)
Retracted stoma-infection/skin breakdown.
Ileostomy Reversal- Oct 8, 2009. Ileus/Dehydration 10/13. New rectal dysynergia-biofeedback-11-19
 
"The Greatest Healing Therapy is Friendship and Love"


lasbutterfly
Regular Member


Date Joined Nov 2007
Total Posts : 281
   Posted 12/3/2009 6:23 PM (GMT -6)   
Janie and Lizzie, thank you so much for your thoughtful replies. I feel like giving you each a hug. I am a mess today. All of this news is spinning me into a depression. My intestines became knotted after my ileostomy surgery in May, and are still healing. Dr. Wexner was able to tell this right away from pressing on my abdomen. My surgeon in Tallahassee is setting me up to have the tests in January, after the holidays, but Dr. Wexner doesn't want to see me until March. I am so afraid of what my life will be like if my intestines don't straighten out. I cannot go on living this way. I am not even making it full days at work. 6 hours and I'm exhausted. The nurses at Cleveland Clinic had never seen my type of ileostomy, either.

butterfly

XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 12/3/2009 6:56 PM (GMT -6)   

Lori-

If I could hug you right now I would and let out all your frustration. I can imagine it is spinning you down. Going through what you have already would have had me all in a mess. That is crazy that even the nurses had not seen an ileostomy like yours. Do they know why this happened back when you had your surgery to your small bowel. I know its so hard to play the waiting game and March probably seems like forever away, but at the same time I am glad they are being cautious with you. He, from what I have heard, is a great surgeon, and CC is where you are going to get the answers you need. He is being cautious with you for a reason. I KNOW how hard that is....but to be honest at this point where I am having be reversed...and cleared through CC only to not be able to go again its better to be sure and healed completely before you have another surgery.

I head to CC in Ohio a week from today. I remember leaving there in tears last year....your time will come sweetie and you deserve a better quality of life. It gets hard to understand why these things happen. I will be praying for you every night and day. I will pray that you can face this with all your strength. I have started talking to someone to cope with the complications and its not a cure all but it helps. I can imagine you are exhausted...you have never fully healed and having continued pain and complications with sutures just makes it all worse. Please know I am here anytime you need to talk.

 

Lizzie

 


Chronic Lifetime Constipation, Dx IBS-C for 7 yrs
Diagnosed Colonic Inertia-Oct 2007
Total Colectomy with ileorectal anastamosis- Jan 28, 2008
Ileus with suspected leak- Feb 1, 2008, ended with four abdomal abscessses and 2 drains
Diagnosed with small bowel Fistula- March 6 2008
Drains removed- End of March 2008
Continued Constipation- biofeedback for 3 mo Aug 2008, Dx Rectal Inertia (Anismus)
Admitted with Small Bowel Obstruction April 4, 2009 and emergency ileostomy 4/13
Re-admitted with abdominal abscess. Released 4/24
Cleveland Clinic twice for 3/4th referral. Anismus undetected (no medical explanation)
Retracted stoma-infection/skin breakdown.
Ileostomy Reversal- Oct 8, 2009. Ileus/Dehydration 10/13. New rectal dysynergia-biofeedback-11-19
 
"The Greatest Healing Therapy is Friendship and Love"


Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 12/3/2009 7:04 PM (GMT -6)   
Lori,
I've been thinking about you all day. I just feel so bad for you. Did Dr. Wexler say he had seen this before? I know this is probably a stupid question, but they can't surgically do anything to help straighten out the intestines?

I'm sure you're very upset today, but please think positively. Did Dr. Wexler give you any reason to think your intestines wouldn't straighten out over time?

If you get to the point where you can't deal, please ask your doctor for some ativan or something to help you cope. It's bad enough to have to go through this, but if you can take something to help with your nerves that would be a good thing.

Please keep us posted, and you know you can come here anytime and vent. Also, if you ever just want to talk, let me know and I'll send you my number.

Hugs,
Janie

lasbutterfly
Regular Member


Date Joined Nov 2007
Total Posts : 281
   Posted 12/3/2009 7:15 PM (GMT -6)   
Lizzie, I feel like you're the only one that understands what I'm going through right now. My husband is so frustrated by all of this and not being able to make it all better. He has gone through so much with me over the past few years. I know it's crazy, because he loves me so much, but I felt like I was a real burden to him today. We each had to come home at lunch, for the second day in a row, to flush out my tube. It was obstructed because I ate a recee's peanut butter cup and part of it must have had a nut crunch in it and I didn't know it. It stopped my ileostomy from draining. I am so afraid of eating something that will obstruct me and we won't be able to flush it out.

I, too, am seeing a counselor. I saw him yesterday and he wants to see me on a weekly basis for awhile. We're working on my fears that are unreasonable and not helping me, but it's hard to tell the unreasonable fears from the reasonable ones with what we're going through.

What are you hoping will happen during your appointment to Cleveland Clinic? If I could have anything in life, I would pray that we could reverse all of this and that we could both have functioning colons. It seems so unfair. It seems that there isn't a cure for constipation.

butterfly

lasbutterfly
Regular Member


Date Joined Nov 2007
Total Posts : 281
   Posted 12/3/2009 7:31 PM (GMT -6)   
Janie, there isn't anything that Dr. Wexner can do to straighten out my intestines until the imflammation goes away. When my surgeon worked on me in June, it tore my small intestine in places and I ended up with fistulas and 3 jp drains that were not any fun. There just isn't anything that anyone can do to help me right now and that's what is so frustrating. Another 6 months seems so far away.

I am seeing a counselor and maybe next week I will ask for some medicine that can help calm me down. I feel like I'm here, but am not feeling anymore. I am just so tired and want the real me back.

You've been such a good friend. Enough about me. How are you doing?

butterfly

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 12/6/2009 12:43 AM (GMT -6)   
Butterfly,

Why are your intestines in a knot? Is it adhesions (like mine were) or do you have an intestinal disease like Crohns? I missed your original post.

Anyway, I feel so bad for you and I wish you all the best. Rosemary

XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 12/6/2009 1:46 AM (GMT -6)   

Lori-

I do understand you....and I understand your feelings with your husband. I hae that I have had to put mine through the last two years. I am on xanax to help with my fears. we are going through the same type issues at counseling.I am facing my What If's?? I know six mo seems forever away, but we are here for you every second of the way.

I do not know what I expect out of CC...i just want some answers and an end to this struggle. Having functional problems of the rectum and intestines like you is just so frustrating. I will pray everyday for healinf of your intestines and for the swelling to go down.

Love you honey and thinking of you daily.

Lizzie


Chronic Lifetime Constipation, Dx IBS-C for 7 yrs
Diagnosed Colonic Inertia-Oct 2007
Total Colectomy with ileorectal anastamosis- Jan 28, 2008
Ileus with suspected leak- Feb 1, 2008, ended with four abdomal abscessses and 2 drains
Diagnosed with small bowel Fistula- March 6 2008
Drains removed- End of March 2008
Continued Constipation- biofeedback for 3 mo Aug 2008, Dx Rectal Inertia (Anismus)
Admitted with Small Bowel Obstruction April 4, 2009 and emergency ileostomy 4/13
Re-admitted with abdominal abscess. Released 4/24
Cleveland Clinic twice for 3/4th referral. Anismus undetected (no medical explanation)
Retracted stoma-infection/skin breakdown.
Ileostomy Reversal- Oct 8, 2009. Ileus/Dehydration 10/13. New rectal dysynergia-biofeedback-11-19
 
"The Greatest Healing Therapy is Friendship and Love"


lasbutterfly
Regular Member


Date Joined Nov 2007
Total Posts : 281
   Posted 12/6/2009 4:38 PM (GMT -6)   
Lizzie, I wish that we lived closer to one another as we go through these trials.  Having this forum is great for letting out true feelings.  I see my counselor, but sometimes it's hard for me to put into words what I'm going through.  Last week, I just cried out my heart. 
 
You are so right when you say that you're worried about the what ifs.  I went to Cleveland Clinic and I was so disappointed that I have to wait until June for my surgery, that I didn't ask about the what ifs or risks.  I guess that I'll ask in March when I go back with my test results.
 
It sounds like we both have patient and kind husbands.  Sometimes I think that it is just as bad for my husband to watch me through this as it is for me to go through it.  Even thinking about the testing that I have to go though, worries me.  I think that I sort of got traumatized by being in the hospital for so long, and am truly nervous about going to them.
 
Thank you for all of your prayers.  You and everyone on this board are in mine, too.  I'm supposed to try redirecting my thoughts when I start thinking negatively about all of this, but it is so difficult to do.
 
butterfly

XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 12/6/2009 10:58 PM (GMT -6)   

Lori,

I wish we lived closer as well.....I cannot imagine what you are going through and how hard each day it must be for you to not think about the negatives that have happened and to have an emmense fear for the hospital. I pass the one I have been in with each surgery on a weekly basis and it makes me cringe. I know how you feel sweetie. I agree with you that it is just as hard for the husbands to eatch us go though the trials we have and they are amazing. "In sickness and in health"...sure got work out of this vow.

It is hard in counseling, but I have found that imine, even though he doesnt understand, is open to listening and sometimes speaking the words to someone besides your husband or friends can be so beneficial. So open up....let your counselor be thre for you and guide you through these months coming ahead. My What If's drag through my mind every night, leep me up, and break me down...but with time my counselor said I will become desensitized to the worst case scenarios and be ok with what "could" happen. I wish I could be closer for you and if I had more time off and even had time to visit I would. Please know we are all here for you...every day. No one can understand you like we do and you need to get your feelings out to those who can help. We care about you so much. Let me know how this week is going....praying for your peace of mind, rest, health, and healing.

Lizzie


Chronic Lifetime Constipation, Dx IBS-C for 7 yrs
Diagnosed Colonic Inertia-Oct 2007
Total Colectomy with ileorectal anastamosis- Jan 28, 2008
Ileus with suspected leak- Feb 1, 2008, ended with four abdomal abscessses and 2 drains
Diagnosed with small bowel Fistula- March 6 2008
Drains removed- End of March 2008
Continued Constipation- biofeedback for 3 mo Aug 2008, Dx Rectal Inertia (Anismus)
Admitted with Small Bowel Obstruction April 4, 2009 and emergency ileostomy 4/13
Re-admitted with abdominal abscess. Released 4/24
Cleveland Clinic twice for 3/4th referral. Anismus undetected (no medical explanation)
Retracted stoma-infection/skin breakdown.
Ileostomy Reversal- Oct 8, 2009. Ileus/Dehydration 10/13. New rectal dysynergia-biofeedback-11-19
 
"The Greatest Healing Therapy is Friendship and Love"


lasbutterfly
Regular Member


Date Joined Nov 2007
Total Posts : 281
   Posted 12/7/2009 4:35 PM (GMT -6)   
Lizzie, I've been working full-time for the past month, but have been taking lots of time off because I get so tired, and also have to leave to flush out my tube (which my husband has to help me with.)  I have had to take lots of leave without pay.  Today, I asked my surgeon if he would write a letter for me to work part-time and he agreed.  Now, I can work part-time and get paid as full-time because of our agency's sick leave pool.
 
I got a copy of a letter this weekend from Dr. Wexner that he wrote to my surgeon.  He thanked my surgeon for sending me to him for a consultation.  He also told him of the tests that I have to perform, my appointment in March, and possible surgery in June.  What scared me, is he said that he had discussed the risks of my upcoming surgery with my husband and me, but he didn't and unfortunately, I didn't think to ask.  I guess that I'll have to ask in March.
 
I am so full of what ifs that it's invading my sleep and daylife, too.  Tomorrow, I have an appointment with my counselor again and it is the highlight of my week.  I can go to his office and tell him how I really feel and cry without putting up a happy front like I tend to do with my co-workers.  My husband, my counselor, and this forum have kept me sane or I would have no one to speak with.  I don't tell my problems to alot of people (other than this forum).. Thankfully...
 
I hope that you get some answers at Cleveland Clinic, and that they don't break your heart.  Every doctor's appointment has started to chip away at my positiveness.  It's difficult to continue repeatedly going through all of our tragic news.
 
butterfly
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