Total Colectomy Part 38

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answers4me2
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Date Joined Dec 2008
Total Posts : 1325
   Posted 10/5/2010 9:18 AM (GMT -6)   
Hodaya, please call me Sunday. I will be home.

I see my doctor next week, so we will see what he says. I don't mean my vaginal discharge smells exactly like my output, but a hint like it. LOL Didn't mean to freak you out Hodaya.

As far as the lump above my stoma....it doesn't hurt much at all and I can definitely live with it if need be. It only hurts when I exercise too hard or walk too fast???? But, this could also be normal feelings only being 3 months out from surgery? I still have not ordered a hernia belt because I would like to get my doctors opinion on the safety of wearing one and ask him if it really helps!

2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 10/5/2010 1:03 PM (GMT -6)   
oh that's ok lol, glad its not as smelly as i thought :) but in any case, you should still mention that to your dr. gosh i already pictured in my head that you're in constant pain.. so glad it's not like that. i don't think it's normal, i don't have anything like it, no lump and nothing hurts even when i exercise. i hope your dr can help you with it. does any hernia, even a small one must be operated? i just don't like the thought you be needing more surgery.

i went to the gyn woman. she sent me to a U.S of my vagina... YUCK i hate having more tests :(((( anyway, i guess i should also make an appt to the surgeon. i just hope that maybe if it stopped the last 5-6 days, it means that it has sorted it self out on it's own??? don't know much about fistulas, is it possible a small fistula can be closed on it's own???
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 10/5/2010 5:33 PM (GMT -6)   
Yes Hodaya, I have read that very small ones do close on their own. This is what the vaginal ultrasound will show.

Better today, no fever, throat better, did a ton of packing and laundry. Going to bed early and keeping on resting. Rosemary

2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 10/5/2010 5:58 PM (GMT -6)   
that is great news you're feeling better, Rosemary. so glad to hear that!

thanks so much for your reply about small fistulas, you're truly the best with tons on knowlege! thanks for helping all of us! that is so encouraging to know it could be it's closing on it's own, cause that's how it feels like to me, like the simptoms are getting less and less as time goes by from the surgery. oh i'd be so grateful not having to have any further surgical procedures.

take good care of your self and feel good!
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 10/5/2010 11:33 PM (GMT -6)   
Glad I could help Hodaya. Yeah, I have knowledge I NEVER WANTED! lol

Rosemary

2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 10/6/2010 11:49 AM (GMT -6)   
hey all, finally starting my new job tomorrow :) and am so glad to start. 3 mons at home have been enough for me and im ready to go out there working. it's an engeneering of pipe systems office and only a 10 mins walk from my home!!! is that awesome or what?? wish me luck :))
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 10/6/2010 9:13 PM (GMT -6)   
Hodaya,

Congratulations! I'm so happy for you, hope you love your new job!!

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 10/7/2010 9:52 AM (GMT -6)   
thanks Janie!! i'm back from work now. it was good, but took a lot out of me. but i sure am glad to work again.
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 10/7/2010 5:35 PM (GMT -6)   
Hodaya,

Congrats! I posted on your other thread but wanted to be sure you got my YEAH FOR YOU message. KNew you could do this.

Rosemary

tinkerbell2
Regular Member


Date Joined Jun 2009
Total Posts : 418
   Posted 10/8/2010 5:44 AM (GMT -6)   
Hodaya, congrats on your new job!!

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 10/8/2010 7:30 AM (GMT -6)   
thanks so much Rosemary and Jenise :))

Jenise, good to hear from you, hope you're doing ok. are you having surgery soon? i don't know what's going on with me, but looks like i have a recto-vaginal fistula. i have a vaginal U.S on the 24th of this month, so will see what this tells. i need to see my surgeon too. hope you're feeling well hon!

Rosemary, are you out to sea yet?? as i recall, you're supposed to be on the sheap already.. have a great time and make it safe back home :) will miss you lots here!!
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 10/8/2010 7:51 AM (GMT -6)   
I had another appointment with a new urologist and his chief pediatric urologist.
He was pretty kind, but I guess that I don't trust in docs any more just because they seem to be quite kind at first. Most of them turn out to play a false game.
Anyway, the pediatric unit is specialized on malformations in the urinary tract, and since some of those kids also have concommitant bowel issues they seem to know at least a bit about motility problems short gut syndrome etc.

While they feel a urinary diversion have to bee done they want to exclude the option that the bladder can serve as a urine reservoir which would be drained be a catherizable stoma through the abdomen. At the moment, my bladder can't store any volume exceeding 100 ml; everything above this level causes pain and spasms.
Since I suffer from chronic urinary infections they want to try to get me clean from UTI by repeated intravesical flushing: this way, they want to check if this alters the situation and if my bladder can store more urine.
Of course this will mean another in-patient staying and again some very uncomfortable procedures I am just sick of. I have not decided yet whether or not to go this route as this will also depend on how the chief urologist from the last clinic I visit (who wanted to rethink over my case and his decision to do surgery) will decide himself. Unfortunately I have not heard anything back from him despite my request. I am really frustrated.

all in all the new urologists seem to be quite knowledgable and cautious since they know that I am a very complicated case. It would be nice to stay in a pediatric unit where they also have yound adults as I was always the youngest patients at the normal units.
I know that this option they prefer at the moment won't work but I understand that they have to make their own picture by redoing some tests etc. And they said they won't preserve the bladder at all cost when it failed to work completely even as a reservoir.

As far as my endocrine issues are concerned I am even more frustrated. I went to the endocrine oncologist again since I was told that the liver and vein alterations are not due to heart problems and must stem from liver and/or adjectant vein issues. Well, the appointment lasted 5 min in which he hold me that he has no expertise in liver issues and I would have to go back to the gastroenterologists. I had been there before (my GI doc was not there) and they sent me to the oncologist.
I was a bit angry - not because he had no expertise in liver issues and not so much because he did not see a possible connection with a neuroendocrine tumto (I have made the experience before that, in special issues, I do know more than the docs) but because he tend to talk down my new symptoms of tachycardia etc and the liver/vein findings just because he could not explain them by himself. He said I probably had nothing there but if I'd like to I could have my liver levels checked.
I hoped to get an imaging of my liver/vena cava done and that's what I got.
He said that if there is something going on we will follow it in my in-patient stay at the endocrinological unit. In the meantime I should not worry since there would be no risk of harm. However, my tachycardia continue to worsen...and I guess that if the initial values they will draw are normal they won't do anything more. And it is not that easy to diagnose caricnoid tumors; there are many patients out there who failed in the blood tests but did have a histologically proven tumor.


Like so often, I feel mistreated and not treated like every other patient. I see patients getting work-up, imaging etc only because they have one abnormal blodd panel or they have some new but minor symptoms. And me? I do wait before I will tell anybody about a problem..but when I tell them I would like to be taken seriously especially as I try to get knowledge not only from patient forums but mostly from scientific journals etc.

And a (partial) obstruction of the vena cava the current findings point to is potentially dangerous. It can cause (acute) liver failure etc.
I will have to go to a liver specialist and I hope that my GI doc will help me. I have an appointment with him next week.
I felt before that although the endocrine oncologist is quite ok all in all (compared to the rest of the endocrinologists) I will need to sees this GI doc who is also into neuroendocrine tumors of the gut and into liver diseases.

XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 10/8/2010 5:04 PM (GMT -6)   
Just a Quick Update:
 
I really need to read through and catch up on everyone......
 
Marisa and Judy....hope to hear from you soon and Hodaya and everyone thanks for all the prayers. I a\had a fistulogram today on my stoma and it was a fistula that has close, but even so I personally got a phonecall from Dr. Stocchi and he feels horrible as the way I am living and I will be having another major operation in about 4.5-5 weeks. It should be mid November sometime, but I will not know for about two weeks. I am still having leaking everyday if not up to four times a day and it is truly miserable. I will at least be in decent shape for this surgery. I have lost some weight, but maintained a good portion since I always seem to lose and with moving it to other side I am going to also try and have a plastic urgeon in on the case and see if things cannot be figured out on the right side and my 24 cm midline inscision. I am very scared for another surgery...it will yet again just be 3 mo post-op and 7TH!!!!!!!!! surgery in 2.5 years and FOURTH since JAN 2010. I just cannot believe what my body has gone through and wonder what it can go through at times. I am very nervoud as its an early time to be re-opened, but cannot wait to Feb. I also was told its quite a large operation and I will have multiple sites healing...meaning multiple sites for infection. I am still running anemic and sure I will need blood. I still have horrible spasms and am still weaning off pain meds. All the surgeries combined have made recovering pain wise much harder and my surgeon is worried about this as well.
 
I leave Monday am to go visit Allie in Texas for 8 days!!!!! I am so excited....nervous for the flight, leaking and such but SOOOOOOOOO happy to be spending time with her again. I love and miss all of you guys and need your prayers for this upcoming surgery as with each surgery my body gets weaker and each recovery gets harder.
 
Lizzie

esoR
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Date Joined Jan 2007
Total Posts : 4147
   Posted 10/8/2010 6:40 PM (GMT -6)   
Lizzie,

You sure got my prayers coming your way. Yeah, moving a stoma I hear is no small op, as you say, you have the other site healing. Great idea to get a plastic surgeon in on it. When I had my adhesion take down and ileostomy there was a plastic surgeon in on my case to help with the adhesion issue. That was a great idea on my docs part. Glad you don't have to wait until Feb. and glad that you can go see Allie. You so deserve some social time. Good luck on that flight. Your skin must be something with all that leaking. ouch! Prayers coming your way.

Peltz,

I never know what to say other than I am praying for you too. And you are soooo young. At some point they have to get you to a point where you can have an outside life. Keep fighting the fight.

Rosemary ps out to sea day is oct 12. wish me luck.

Gilda
Regular Member


Date Joined May 2009
Total Posts : 194
   Posted 10/9/2010 12:46 AM (GMT -6)   
Hodaya,  I am so happy that you got another job and feel you can do it!  I keep wanting to do just everyday things, for starters, like being able to do a couple loads of laundry and then maybe run 2 errands.  Somedays I can do this and other days I have to keep lieing back down because I feel so weak!  I was hopeful that either the Xifaxan or the Diflucan were going to be the answer; they take care of the diarrhea but lately they have been causing severe constipation . . . . then I get the pain I had for years prior to my April 2009 SubTotal Colectomy!  Sometimes I get so darned discouraged!  It seems that my friends have really "faded away" and even my husband can't stand to hear about these types of problems most days.
 
Lizzie, I am so glad that you are going to visit Allie!  I really don't know much about the history of your friendship.  Have you known each other for long; did the friendship develop thru this website?  Do you have to travel far to see her?  Anyway, I think it is great if you can have some time with a good friend before having another surgery.  I really hope that both of you start doing better!
 
As for me, somedays I think I am getting better; other days I feel i should try an Ostomy.
 
Hodaya, are you still pretty happy with your Ostomy?  Any major problems?
 
Thanks,
Gilda

pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 10/9/2010 3:18 AM (GMT -6)   
Allie,
how are you doing? and what's about your surgeon - is he now willing to perform an ileostomy?

Did the article I sent you helped a bit?

I am glad Lizzi will visit you and will give you some distraction from this ordeal we have to deal with on a daily basis. For me, I feel so drained I can't say it and tha's mostly due to the ignorance and inhumanity of many docs.

If I should ever go to the U.S. (maybe I will have to go for medical reasons some day, who knows?) I would like to meet you, really.

tinkerbell2
Regular Member


Date Joined Jun 2009
Total Posts : 418
   Posted 10/9/2010 7:19 AM (GMT -6)   
Hodaya, I was just catching and reading about your issue.. gosh, I hope everything works out - enough is enough! My next procedure is Nov. 2nd, just 2 days after we return from our cruise vacation!

Lizzie, oh you poor thing.. you've been through so much! I totally have been counting my surgeries too.. I'll be having my NINTH (9th) in under 2 yrs! Thankfully only 5 (which is still way too many!!) in regards to my pelvic and bowels.. the others have been on my poor little foot! Our bodies are amazing. I know that my tummy is all messed up with the scaring and surgeries, so I hope that a plastic surgeon can help you! I'll be praying for you girlfriend! Oh, and 8 days in Texas with Allie - how exciting! What a wonderful friendship you two have going.. give Allie a big hug from us all here!

Rosemary, hope you have a wonderful time on your cruise ( I know you will) and dance all the nights away.. LOL

Peltz, I'm like Rosemary, just have to pray for you, as you have so much going on at such a young age. Hope you have lots of family support.

Glida, hard to know what to do, isn't it. I'd say as long as you have mixed feelings, keep trying the medications and hope that time improves. If it doesn't you'll reach the point to know it's the right thing to do.
~Jenise~


Chronic Constipation - last 20+ yrs.
Stage lll Pelvic Floor Prolapse ( rectocele, rectal, vaginal, bladder) Rectopexy, Sacral Colpopexy, TVT Sling - 8+ hr surgery - March 2009
Constipation increased, could not move bowels without excessive straining or laxatives - March 2009
TVT Sling Released - April 2009
Redundant, Twisted, Prolapsed colon found - causing mechanical obstruction Oct. 2009
Rectosigmoid Colectomy w/low anterior Anastomosis & Revised Rectopexy - Dec. 2009
Perineorrhaphy & Posterior Colporrhaphy (rectocele repair) - Dec. 2009
Today - using MiraLax daily,but still struggle to have a BM :(

** update: Surgery to fix rectocele and other pelvic issues 07/26/2010)**

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 10/9/2010 10:41 AM (GMT -6)   
Jenise,

Good thing for you you are not an internal small bowel scar tissue former or you would have major small bowel obstructions by now. Good for you for NOT having this issue. You have a major good thing going for you. Good luck with your ninth surgery.

Gilda, Keep a log (as though you already likely have been doing that) write down every med, every food and beverage combination you have been taking in. See if there is ANY way to strike a balance that allows you some semblance of normal life as the years are going by here. If you can find no balance and come to the end of your rope, then an ileostomy with stoma made correctly IS do-able. Oct. 12 if all stays well with me I'm off on my 9th cruise in 3 years. I'm not saying it's easy, but I'm doing it. Plus ballroom dancing. Having an ostomy in and of itself is not scary. The only issue I have hanging over my head is possible adhesion reobstruction, but those were removed during the ileostomy surgery which was necessitated by the 2006 unneeded overdone surgery for which I am in litigation. And so far I've been fine, so I'm seizing the day. Like Jenise said, YOU WILL KNOW, when the time is right for an ostomy. I had no choice. The ostomy was needed to save my life. So for me it was a no-brainer. For you, it is a major choice, but you will know when and if.

Lizzie, Have fun at Allie's. You deserve it.

Rosemary

evans18
Regular Member


Date Joined Apr 2009
Total Posts : 195
   Posted 10/9/2010 11:48 AM (GMT -6)   
Hey gals, I am doing a little better these days. Just takin one day at a time. Counseling has been great and has been helping me get through these difficult times. At least for the most part I have been feeling well. Lost six pounds in 2 days because of all the stress, but I think my belly needed a break anyway. Want you all to know that I think of you all daily and never forget you! You are some of the closest friends I have and have never met! LOL! Maybe one day we can make it happen, who knows!

    * Marisa

    * 1999-Appendectomy with Cecopexy

    * 2001-Ruptured ovarian cyst

    * 2004- Emergency hysterectomy

    * Lifetime Chronic Constipation

    * 6-1-09 Total open colectomy with illiorectal anastomosis


* 3/24/10 Gall bladder removed

* 4/3/10 Feeling great for first time in a very long time!!

Trust in the Lord with all thine heart: and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths. Proverbs 3:5-6.

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 10/9/2010 12:17 PM (GMT -6)   
Sarah, praying the drs finally find a way to help you, you need a break.

Lizzie, i'm glad they moved the surgery earlier, praying you make this through smoothly, have a great time at Allie's :)

Gilda, i'm so disappointed to hear the diflucan is not working, i was so hoping it would be your answer.. you can't seem to have it mid way and that's frustrating for sure. working is good for me. the first day was pretty hard for me, then was the weekend and tomorrow is my second day. i took only a part time job - 8:00 - 14:00, so its not that bad. i can't work a full day, too hard for me, at least for now. i have a meeting at the social security about disability. will see. i'm so sorry you're having such a hard time. i'm kinda isolated and depressed too, i don't feel much like going out and stuff. that's why i want to volunteer, it can fullfill my empty heart with new possitive feelings. it should do me good, i just hope i'm able to (physically).

i'm very happy with my ostomy, i feel the best i have in 17 yrs. i'm doing pretty good, no major problems. it's not perfect, but it's the best i can get and i'm very happy i could have it. i hope you're able to make the right dicision for you.

Jenise, wow.. 9th! poor girl, i hope things works out best for you too. enjoy the cruise, it should also give you time to relax before the surgery. all of these surgeries in such a short while.. Lizzie and you are so strong and i pray its your both last surgery. i don't want to have more surgery either and i've heard fistulas are problematic and don't go away easily :( even with surgery, so i'm really frustrated with this fistula. i have too much secretion from my vagina b/c of it and when i get my cycle, blood is going from the vagina to the rectum. sorry to be so graphic.. i just hate it that when i finally think everything is starting to work out, something new comes up.. :(((( anoying!
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 10/9/2010 12:47 PM (GMT -6)   
Thanks for all your prayers and support. I am still battling this nasty flu....it has been about a week now. Marisa....I am very worried for you. There are other ways to get ahold of me. If any of you have tried texting me I acidently threw my iphone in the wash :( and am trying a company to fix it. I have other numbers though and if any of you need to talk or anything I am always here for you. Marisa.....you did not have weight to lose sweetie and I cannot imagine what your going through, but I am always here for you.
 
Allie and I did form our friendship through here....she told me to call her I did and I feel like we have not had a day we have not talked. When I was in the hospital for almost eight weeks she would call at least four times a day or text and talk to me until I fell asleep. Meeting her in person after my last surgery and showing her some of Michigan even stregthened our bond. My hisband knew what I needed was a visit away to see her. She sends me packages that keep my spiritual life as amazing as it could be, daily scriptures, and just two dats ago an amazing boquet of my favorite flower gerber daisies in the most beautiful colors. If I could visit all of you I would, and some in oarticular that I feel so close to I would give anything to spend sometime with.....Gilda, I wish you would have stayed longer. Its one thing loving and caring for one another on here, but I can tell you meeting someone you feel so connected to is SOOOOO amazing and I hope more of us have the opportunity to meet. So many of you are close to my heart and in my thoughts everyday. I will give Allie a hug for all of you. She will find out next week her appt in Mayo and she got a copy of the letter her GI sent to Mayo and it sis suggest the idea of a end ileostomy which she was very greatful for......
 
You all are a piece of my heart in so many ways.....Some of you I have talked to foe over two years. Hodaya, Rosemary, Gilda, Janie, Judy, Jen, Tracy and Marisa are some just in particular that I have known in my heart for so long and believe me...meeting Allie and having her here right after surgery saved me and I believe she is going to try and do the same thing again after my next surgery, which I can be totally honest with just you all. I AM SOOOOOO scared. I hope all of you know how much I love every single one of you.
 
Lizzie

Post Edited (XtremeMisery) : 10/9/2010 12:54:11 PM (GMT-6)


Gilda
Regular Member


Date Joined May 2009
Total Posts : 194
   Posted 10/9/2010 2:21 PM (GMT -6)   
I just wanted to say that I think a great deal of all of you. I am so thankful that i found this website and have others to talk to about these types of problems! I really hope that everyone finds some things to be happy about this week! I am getting out a little bit; my husband and I are going out to see, "Little Shop of Horrors" tonight (musical comedy). I really like the theatre and we try to go out at least once a month. I really hope my "stomach" behaves so I can just relax and enjoy. One problem I would really like to solve is "gaining weight." Lizzie, I know I told you I gained a little when I was on the Diflucan; now I have lost again and I only weigh about 104 pounds and I am 5'4". I feel like a skeleton! I only have one pair of sized 4 jeans and even they, "fall off me"! do any of you have major problems maintaining your weight? I am hardly ever hungry and I know that food = problems for me; so it is very hard to eat. Really (and this probably isn't good), sometimes the only way I can get myself to eat is at night, after I have had a glass or two of wine. I am not sure why, but wine or beer make me hungry. Of course i don't do this every night and I do realize that alcohol can make things worse (but with me it doesn't follow a pattern). Take care everyone and let me know if you have any more input about weight gain/loss.
Gilda

I'd Rather Be Riding
Regular Member


Date Joined Apr 2010
Total Posts : 149
   Posted 10/9/2010 6:03 PM (GMT -6)   

Hi Ladies,

 

I hope you are all enjoying the weekend so far! I have been reading and keeping up to date on everyone, it's just with these classes, by the time I get my work done and have the chance to post here, I can't keep my eyes open. The pain hasn't been very good lately, and that "worn out" look is really showing on my face.

 

I am SO EXCITED for Lizzie to be coming for a visit!!!! I'm sure it will feel like summer to her, but 80 degrees also means that all the rose bushes, azaleas, and crape myrtles are still blooming! Having a super, super close friend physically there who completely understands, and has lived, this disease process makes all the difference in the world. My family knows I am sick, but as far grasping the pain (physical and emotional)...that is something they cannot do, and most of my friends have pulled away because I don't fit into their world anymore. I am so unbelievably thankful for Lizzie and for all of you. I thought a total colectomy was all that could be done for me...until I met all of you! Please, please, please pray tons for Lizzie's upcoming surgery. It is going to be another major surgery...and I am so worried about her. Pray for nothing less than perfection, and that this seventh surgery will be the last one and the one that gives her the life back that she so deserves!

 

Sarah, as always, I am praying for you and that the doctors will take initiative, that their curiosity would be sparked, and that they can quickly find what is wrong and what needs to be done to give you your life. I know the feeling of being trapped-- trapped inside a body that doesn't function correctly, trapped by a lack of progress in diagnosis and treatment, but every single day we just have to get up and continue to fight. Whenever you feel like you can't go on, just remember all the support you have here. While we are scattered all over the world, not a single one of us is ever alone. I hope you do come to the US someday, even if it is to see more doctors (the doctors at Mayo have been wonderful to me, and they hate to see young people suffer), and I will gladly meet you at the airport!! Would a contrast study of the veins in question be of any benefit? Could that possibly show the doctors anything?

 

Thank you so much for sending that article. It really has helped a lot. I talked with Mayo last week, and they confirmed that they had received all of my current test results as well as the letter written by my GI doctor here in Texas. Dr. Gupta (my Texas GI) really is a wonderful man, and he wrote a very detailed letter to Dr. Camilleri (Mayo) asking that he see me again. His letter also asked that I be considered for an end ileostomy (that made my day!), so when I see Dr. Camilleri again, he will already know that I want to discuss that option. I should be hearing back from Mayo this week to discuss appointment availability. I hope they can get me in soon because the rectal spasms continue to worsen, and I'm just ready for surgery. I hope I will not have to fight my parents to get it. I have been trying to deal with this since my total colectomy, which was three years ago.

 

Gilda, I don't have much of an appetite either, but I don't have a choice when it comes to eating. I have found that smoothies go down pretty well (not always great, but better than most things) and they taste so good. My body doesn't tolerate any dairy, so I use hemp protein powder. I know that sounds really strange, but it has a nutty taste that is really yummy when there is banana in the smoothie too. There are egg white protein powders, soy, rice, whey, pea...so you can use whatever works for you. However, with your diarrhea problem, you might want to make sure the protein isn't sweetened with any sugar alcohols like xylitol because those can cause diarrhea. You can mix whatever you like...after surgery I blended a can of peaches in 100% juice, a frozen banana, and protein powder. Now my usual is Bolthouse Berry Boost, frozen banana, maybe a few frozen cherries, and protein. You can add almond or peanut butter to them as well or flax oil for some Omega-3.

 

Rosemary, I hope you have a wonderful time on your cruise to Africa. Take lots of pictures and post them to an online album when you get home! It's not too difficult, and I can tell you how to do it if you want.

 

Hodaya, I am so happy for you and your new job! You deserve it!

 

Marisa, I cannot image what you are going through. While justice was not done here on earth, that man will be held accountable by someone infinitely more powerful than a judge in a courtroom. I know that doesn't take your pain away-- I know nothing can. John 16:33 says, "I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world."

 

Well team, I know they say there is strength in numbers, but I would like to add to that and suggest that there is sanity and solace in numbers as well. Much love and many prayers to you all!

 

Allie


Life-long GI problems.
- 2004: Motility problems completely took over my life (I was 18). Tons of doctors later... 
- July 2007: Diagnosed with colonic inertia, small bowel dysmotility, delayed gastric emptying, rectal dyssynergia at the Mayo Clinic
- November 2007: Total colectomy with ileorectal anastomosis; IV lipids, PICC TPN
- Post-op: Better, initially. Motility slowed again 8 months after surgery. I currently have chronic debilitating pain due to a small bowel dysmotility.
- September 2008: Barium study shows dilated small bowel loops (4.9cm), indicative of partial obstructions
- May 2010: Doctors suspect worsening rectal dysmotility; manometry inconclusive; rectal biopsies normal
- June 2010: Biofeedback (entire pelvic floor in full spasm...PT has quite the project on her hands!)
 
Currently trying to figure out what my physical abilities will allow me to do career-wise. Psalm 73:26 - My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
 
 

Gilda
Regular Member


Date Joined May 2009
Total Posts : 194
   Posted 10/10/2010 10:04 AM (GMT -6)   
Hi Allie, Thanks for all of your diet suggestions; have you been able to maintain your weight? It is interesting that you mentioned a Bolthouse Product; I love their products! Mostly I just drink their Chai Tea/Soy/vitamin drink. I heat it up and drink it in the morning instead of coffee (sometimes). I really need to start making more smoothies. Somedays I hardly even have enough energy to do this though! It's tough. Yesterday my husband made some food for me; it was great! It just felt good to be "babied" a little. Sometimes I am so weak that I really need this!

Allie, did the Bio-Feedback ever do anything for you? What were they trying to achieve, specifically thur Bio-Feedback? My doctors want me to try it but I sure don't think it will help with the diarrhea problem! I think maybe they suggest it because they don't know what else to do?

Have a great time with Lizzie! Tell her I said hi!

Gilda

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 10/10/2010 1:33 PM (GMT -6)   
Hodaya, sorry I missed your call.....please call me back if you have time and are still up. If not, can you call tomorrow, Monday? I am off tomorrow also.
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