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Total Colectomy Part 37

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Posted 9/18/2010 6:07 PM (GMT 0)

  

Sarah - Thank you so much for the information, and for telling me about your experience. I know an ileo won't be a cure (nothing will, unfortunately), but I do feel that it will make a big difference with the pain, bloating/distention, and nausea. Eating will always be a challenge, but if an ileo will make life even a little easier and allow me have a little bit of a life, I am all for it. If you come across any articles, that would be great, but I know you have a lot going on yourself...how are you feeling? Any updates or news from your doctors?

 

My gastroenterologist had a cancellation, so I was able to see him on Thursday. Given that biofeedback made me worse, and there are no medications, he told me to go ahead and make another appointment at Mayo. He is a wonderful doctor, and he knows that Mayo is where I need to go, as I am not a normal case. He will gladly write Dr. Camilleri update letters and send all of my current information and test results. My parents and I have to discuss when a trip can happen, but hopefully it won't be too long.

 

Hodaya - I am so glad to hear that you are feeling so much better! I understand that the chances that they will remove my rectum are low, but I really hope they will because my rectum goes far beyond being non-functional. It is very painful, to the point where I have times when I cannot walk or stand upright. When I wake up in the morning, the first thing I feel are the rectal spasms, and they have even woken me up on occasion. I do not, under and circumstance, want a loop ileo. I want the connection between my small intestine and rectum to be completely severed because my body does not tolerate anything inserted rectally, like an enema, for example. My heart rate goes through the roof, I alternate between sweats and chills, extreme nausea, and near-vomiting. I know they won't remove my rectum and do an end ileo in the same surgery because they will want to give me the option of being reconnected. I just want an end ileo now, and hopefully they will agree to remove my rectum later.

 

Emotionally, I think I am beyond ready for it. I have done my research, and I have been around ostomies. I have hit the point where an ileo could not possibly be worse than how I feel now. It's my parents that need to emotionally get ready for this!

 

Leslie - I am so sorry to hear of this new development. Praying for you, and please keep us posted!

 

Marisa - My heart breaks for you and your family...so many prayers.

 

Gilda - I would have your pelvic floor checked, but as far as treating any dysfunction, biofeedback only works in less than 50% of cases. Your doctors may require that you try a round before they do anything, but it does sound like an ileo would give you some freedom. Another thing you might try is grapefruit seed extract (health food stores will have it). It will wipe out any intestinal yeast infection or bacterial overgrowth without the additional side effects that prescription drugs can cause. Get it in tablet form (they're little), and you can take one before breakfast, lunch, and dinner, although you may want to start at a low dose and work your way up. You may feel kind of icky initially as the yeast and bacteria are killed off, but that will pass.

 

Love and prayers to you all...hope everyone has a great weekend!

 

Allie   

 

Posted 9/19/2010 3:02 AM (GMT 0)
Leslie,
I think they took out the rest of Gilda's colon after they did the sub-total colectomy so she is working with only her small intestine and small amount of her rectum now. I think that's her situation anyway. Unless I'm wrong.

Gilda, YES a yeast infection in the small intestine can give you diarrhea. take that Diflucan then eliminate sugar as much as possible as that is what reactivates yeast. See if this helps you. ALSO, have them test your "poop" for the presence of Lactobasillis and other healthy bacteria (healthy bacteria that you need). If you don't have any healthy bacteria, they should start you on a course of PRObiotics. You may simply have an imbalance in gut flora that's giving you the diarrhea.

As far as testing your rectum to see if it functions, I'd say yeah it does if you are going this much. Poop has no trouble escaping from you. BUT, prior to getting an ileostomy, why not have the rectal test? The ileo should be a last resort. BUT, if you go through these steps as I've suggested and other things your doc may think of and cause of your diarrhea cannot be found, then an ileostomy won't cure the diarrhea BUT it will save you the burning rectal pain. You will still have to use the bathroom frequently, but you will be more "portable" and it may borrow you some time before having to rush to the bathroom. Your situation sounds like it's high speed function of the small intestine, but if no cause or cure can be found, then it's possible an ileo may allow you to leave the house for longer than you can now. That would free you and allow you to resume some sort of social and family life that we all so desperately need. Remember you do have to empty an ileostomy bag when it's 1/3 full but otherwise, you choose when to empty. So perhaps more time between bathroom visits?

Ask your doc about all my ideas and his additional ones, then try them. Do everything you can medically prior to having an ileostomy.
Good luck, Rosemary
Posted 9/19/2010 8:13 AM (GMT 0)
Allie,

I think the acrticle which meantioned the ileo as th best option to treat panenteric dysmotility is called something like 44 pediatric cases with chronic intestinal pseucoobstruction.

I have a very hard time since my general doc who is convinced that i don't have any endocrine problem talked with my GI doc and apparently he told him very unpleasant things which are of course not true.
Anyway, my GI doc is very modest and now feels that the endocrine problem is beyond his expertise and that I should go to the endocrinologists which I don't think would get me any step forward at this time. So he does not want to perform the tests any longer. I can actually understand him, but was frustrated and desperate anyway.

However, I asked for an uabdominal ultrasound because of my new flank pain among other things that should be clarfied as good as possible with an ultrasound.
He agreed and I had it yesterday. The examiner was a young doc and very kind, explained everything to me. Basically, I have an enlarged non-fatty liver with congestion of the blood flow through the hepatic veins and the vena cava inferior, the vein, that drains to the heart.
He said that a heart ultrasound should be done soon since these chanigings can be a result of heart dysfunction especially as I have developed heart racing.
He also said that he could see the stomach which is usually a sign for delayed gastric emptying (and I had not eaten anything in 12 hours) and that the small bowel loops were dilated. But since this was not an ultrasound of the gut these casual findings are not reported in the final report, unfortunately as I need every evidence taht I don't have an eating disorder etc.
This finding makes it unlikely that my altered stomal output even if I don't have an episode of bacterial overgrowth like now is due to better motility. In fact it seemed to have worsened. Diarrhea is a common clinical finding in carcinoid and other gastrointestinal neuroendocrine tumors.

When I asked him what could be the underling cause of this and if it could be related to a neuroendocrine tumor he suddenly was very reluctant to say anything and was obviously uncomfortable.
A certain neuro-endocrine tumor called carcinoid can damage to the heart leaves by excessive release of serotonine and other hormones.Moreover an enlarged liver in the absence of fatty liver can be associated with liver metastases from tumors elsewhere in the body.

In addition I could finally convince my GI doc that an appointment with the endos is not a good idea at this time and that I also need someone with a gastroenterological background. He then ordered me to get an appointment with the neuro-endocrine oncologist. I will go there on Thursday. So please pray for me that they will take me more seriously than the endocrinologists and my general doc in whom I have no trust any more.
I hope that the report from the ultrasound will alert them to clarify my symptoms. I have no date for the heart ultrasound yet since I was told that this should be done by the oncologists.
Moreover I hope that there will also be the gastroenterolgical oncologist since this would be important with my underlying condition and the option of having a gastroointestinal carcinoid.

I am so drained, but i strongly feel that something is wrong beside the CIP and that it is more serious than just general unwellness secondary to the CIP. I am very concerned that the oncologists will not take me seriously when they don't accept the fact that my panels were grossly altered and still seems to be not returned to the previous levels.

Post Edited (pelztier86) : 9/19/2010 2:30:07 AM (GMT-6)

Posted 9/19/2010 12:10 PM (GMT 0)
Anne - welcome to the board. The ladies on here are very helpful and supportive. At the moment, I'm still on the laxative route, but we now know that this is not going to work so on to plan B, laxatives and biofeedback. If it wasn't for other health problems, I definitely would have gone for the Total Colectomy, as first choice.

Hodaya - Thanks for explaining your experience. It was really helpful and interesting.

Leslie - I'm so sorry to hear of your diagnosis. I hope your MRI appointment as it will give a much more detailed picture than a CT scan. When you say you have black outs, do you go into a full convulsion? Also, can you remember if the Neurologist mentioned your temporal lobes? I can empathise with you about having one health problem after another. It's awful when recovery is going well with one illness only for you to be kicked in the face with another. You are in my prayers.

Allie - thanks for the update on Lizzie, still praying for her. Sorry you're not feeling well and have had to discontinue biofeedback. That's great news about getting a referal to Mayo. Praying the appointment comes through really soon and the docs are able to help you. I know how you feel regarding having to live at home. It can be very frustrating at times! Thankfully, my father doesn't have the attitude 'as long as you live under my roof you do what I say' and neither did my mother. However, it can still be very difficult, as we are both adults so have our own opinions. Really hope you can get them on your side.

Jenise - Really sorry to hear that your brother's killer has been released. The so called justice system you have absolutely stinks!

Gilda - I would definitely advise you to have the different tests to find out some information about how your rectum is working.

Sarah - I'm so sorry to hear your news. I'm not surprised you are drained with everything you are having to go though. Praying you soon get the appointments and the doctors are able to help.

Last wednesday, I went to see my Gastroenterologist, and things didn't go to well. To be honest I wasn't surprised, so had already emotionally prepared myself. Regarding this new drug Prucalopride I managed 2 bms in 3 weeks. He explained that in the research trials, it was classed a successful outcome if a patient had 3 bms in one week. So not a resounding success for me! I also explained to him that this drug regime is making the Anismus symptoms worse as the laxatives are causing me to strain more. Now we are on to plan B, and I'm being referred for biofeedback. Will be seeing him again in a few weeks, but at the rate he works I'll be surprised if I've heard about my first appointment re: biofeedback.
Posted 9/19/2010 5:02 PM (GMT 0)
Rosemary  So then Gilda is just hooked back up then No appliances?  My daughter keeps telling me that the Depakote makes my eyes look like I am high?  Did this do anyting like that to anyone of you who took it?  I know that some mornings I am super grogery...this morn not too bad.  I just kind of have a tummy ache as I ate all night before I went to bed.  Took some of my Lactaid so I could eat a bowl of Icecream, but I think I ate too much...wow it makes for really stinky gas....lol..

Leslie

Posted 9/19/2010 5:38 PM (GMT 0)
Leslie,

Yes Gilda is currently hooked up small intestine to rectum. She is trying to decide if having the small intestine bought out through abdomen and made into ileostomy stoma with a bag would give her more freedom from being tied to the bathroom as she has such diarrhea throughout the day. I think it would buy her time, but if she still had the diarrhea she would still have to be going to the bathroom to empty the bag frequently. But at least she would not have to hit the bathroom immediately and the bag would buy her some time. That's my understanding of her situation anyway. I know personally if I was hooked small intestine to rectum I would be in her same situation as my small bowel transit is very fast. I really feel for her as I do for us all.

Have never heard of Depakote, so can't opin on this. Sorry. Good luck.

Rosemary
Posted 9/19/2010 6:21 PM (GMT 0)
Rosemary  I am not sure how long ago her surgery was, but for me I had lots of bm's in the beginning then it slowed way down.  Sometimes it feels as though you wont make it to the bathroom, and sometimes I can wait a good amount of time before going.  It just all depends on what I eat I think or just the fact that food really goes through me fast sometimes...  I can even go a day w/o bm, very rarely wake up in the middle of the night to go, so its a crap shoot, I never know.

But have been feeling really well this week, and the Depakote is a sezieur drug.  So have to hit the shower as my daughter and her husband are coming over.  He came up from Calif, this weekend to see if they can work things out to save their marriage...I hope so, less stress on me....LOL

Have a wonderful day...time to sing in the shower...

Leslie

Posted 9/19/2010 6:26 PM (GMT 0)
Good Les, Glad you are having a good day. Hope things work out with their marriage and lessen your stress. Rosemary
Posted 9/19/2010 6:31 PM (GMT 0)
Allie   Your right about the bio-feed back, does not help the majority.  So your considering a ilieo?  I guess we all come to a point when we have to make a hard choice for our health  For me I am happy with my Total Colectomy, although I have had a few bumps in the road.  I feel really good in between the bumps...lol

 

Now with this new problem with my brain I am very anxious to get the MRI over and done with to see if it will tell us what is going on with me...

 

Love to All

 

Leslie

Posted 9/20/2010 12:03 AM (GMT 0)
So yes my brothers murderer was let free. Very devestating for me. He can also come back to the county just not Pocatello. But there are many outskirts of Pocatello just like Chubbuck where I live. I am very scared. Sick to my stomach infact. I have lost 7 pounds in two days because I am so stressed out. I do not know if I can get past this. It hurts too bad. My pastor is helping me tons but it is just eating me up. I Janie looked at the article already, but if anyone else wants to you can at thejhub.com.
Posted 9/20/2010 12:29 AM (GMT 0)
Oh Marisa, I am so sorry to hear this. This would be like my medmal case being tossed. It would devastate me. Plus you have the added feeling of being unsafe. I am just so sorry. Sometimes there is just no excuse, no earthly explanations. All I can say is I'm so sorry to hear this.

Rosemary
Posted 9/20/2010 1:42 AM (GMT 0)
Thank-You Rosemary, Leslie and cookie for all of your input regarding my situation. The surgery I had in April 2009 was called a Sub -Total Colectomy with ileo-sigmoid anastamosis but one doctor who looked at x-rays later said, "Really it's an ileo-rectal anastamosis. Then, last week when I saw my new surgeon at Scripps Hospital in San Diego; he said, "You do have some colon left but it is only about 2". He said that the gastro-gaffin small bowel series they did on Wed. showed everything to look good so he presumed the diarrhea problem was just due to me having a fast transit time. On Thursday my PCP called and said the stool tests results came back showing a have a pretty high yeast count thru-out my body. She put me on Diflucan 100 mg; once a day. I have now taken 4 pills and the diarrhea is lessening (more formed stools). The problem is; if I even eat 1/2 of a sandwich or a few bites of anything . . . .I will need to use the bathroom within the hour! It is so annoying. Like today; I kind of rested most of the morning and by 2:00 I really felt ready to "get out of the house." I ate one small bowl of oatmeat at about 8:00 a.m. but between 8 and 1:00 p.m. I had about 4 BM's. Then, finally I figure . . . I am o.k. now to leave the house for a while. My husband and I put our beautiful dog in the car and start heading for the beach. I had a very small quanity of food to eat in the car on the 30 min. drive to the beach. We hadn't walked on the beach for more than 10 minutes when I started feeling all the rectal pressure of needing to use the bathroom! This happens to me all of the time! Even though it is uncomfortable, I can hold out and wait until I get home to use the bathroom. I am so tired of always being afraid to eat anything unless I am at home where I feel comfortable using the bathroom. I always need to use wet wipes (aloe & E) and ointment afterwards because of the continued soreness and often bleeding! Here's what I would really like input on:

1. Do some of you wonder how you can have so much output when you eat very little?

2. How frequently do those of you who have bags, have to empty them? Do you ever end up in situations where you feel frantic about finding a bathroom that is private enough to do this?

3. Do any of you feel pretty weak and tired most of the time? I mean, can you plan a pretty normal day (activities that "intact" people would be able to do) and not have to stop to rest frequently?

I may try and go ahead and get the "rectal functioning" test done by a motility specialist. I really think my rectum works well it's just that maybe I don't empty completely and that's why I have to return to the bathroom several times (sometimes) within a one hour period! I am not sure what they could do about this anyway and I sure don't want them "stretching it out" or whatever and then having a problem with incontinence! I need to figure this all out rather quickly. We will have good insurance until the end of the year but then it could change. Plus, finally all of our co-pays and co-insurances are paid so if I need surgery, I want to get it done before that all starts over in Jan. 2011.

Thanks for all your time and caring!

Gilda

Post Edited (Gilda) : 9/19/2010 7:45:41 PM (GMT-6)

Posted 9/20/2010 2:14 AM (GMT 0)
Hey Gilda,

Good job getting the yeast test. Glad the Diflucan is helping. I knew yeast could give diarrhea. Regarding the multiple moves soon after eating, I do think that would indicate rectal emptying problem otherwise logically there would be one or two complete moves and you'd be done for awhile. There are several tests for rectal function; all tolerable. Defecogram (movie of you pooping out contrast), pudental nerve terminal latency test, anorectal manometry. Basically these test nerve, muscle, and pelvic floor movement issues as well as structural abnormalities of the anorectum area. Some can be fixed successfully, others cannot.

Answers to your specific well-focused questions:

1. We generate a LOT of poop even if we eat very little. Everyone does that. Even the 13 months I was unable to eat due to on-going small bowel obstructions result of the 2006 unneeded disaster surgery, I lived on clear liquids and would build up quite a bit of stool by the end of the week, thus necessitating my use of a half gallon of bowel prep to get the poop down through my scarred-in colon and rectum. So we all generate tons of poop even if eating very little.

2. My bag emptying number of times depends totally on what I eat and drink. As a person that is now adapted to use of small intestine only I empty maybe 5 or 6 times per day. The only time I get into real trouble with severe volumes of frequent emptying due to horrific diarrhea is if I eat sugary stuff or fake sugar and have not also eaten real food. Then I need an immodium. BUt in general when I eat "normally" I empty 5 to 6 times per day. ANd I can choose when I wish to empty as long as the bag does not get too heavy. But I don't have to "rush to the bathroom."

3. I have felt weak and tired since going through my ordeal of being severely gut injured by the original surgeons and being unable to eat for the 13 months that followed. BUT that was not the ordinary scenario of most of us on this board. BUT even after I got the needed lysis of small bowel adhesions and the ileostomy (which thank god so far is working and I pray all stays well), I still feel chronic tiredness, I dehydrate easily, and I do not have my original stamina.

Two reasons: with an ileo the stoma is small and personally I cannot eat what I used to be able to eat without getting a food blockage. on ct enterography all was open, but i have to avoid mashed potato and other heavy vegetables. so i eat airy light things such as yogurt with protein powder, baby food meat with 10 grams of protein per jar, eggs, white breads, well cooked summer squash, bland, bland, bland. Others on this board with ileostomies are able to eat a much wider variety of food. I'm just citing what I can eat.

Another reason for the chronic fatigue is that without the colon to reabsorb water, electrolytes, and certain vitamins like vit. K and B12 we tend to feel lethargic. I have to get B12 injections once per month. Plus I take vitamin D, K, and a multivitamin daily. BUT I get 8-10 hours of sleep per night and am able to carry out plans for a day. BUT for unknown reasons I'm always a bit light headed. But I can go traveling, and sightseeing, socialize, walk on beaches, swim, ballroom dance, and have a "normal" life.

So that is my response. Have those rectal tests and get back to us with results. I'm sure others will chime in with feedback. And remember our bodies are all different, so there are no absolute "correct" answers. good luck.

Sincerely, Rosemary
Posted 9/20/2010 3:02 AM (GMT 0)
Rosemary, you are so knowlegable (can't spell) and so wonderful to have on this site! Thanks for your very thorough answer. I hope my insurance co. doesn't "balk" at me having more tests but time is of the essense; I need to make some very serious decisions soon. I guess if there is a problem with my rectum and they might be able to fix it, then I need to do that before deciding on an Ostomy.

Thanks again!
Gilda

If anyone else has anything to add I would definately be interested!
Posted 9/20/2010 3:08 AM (GMT 0)
Gilda,  Wow ya the yeast has got to go.  I sometimes wonder where all the suff comes from when i do not eat much.  But even when you do not eat you still continue to make poooo, saw that on one of my doctor shows...

Leslie<!-- Edit -->

Posted 9/20/2010 3:47 AM (GMT 0)
Gilda,

I just thought of something that I came across in all of my research when I put my case together.

Do go ahead and have all those rectal tests as those will tell the tale; and if your rectum can be fixed, I'd advise trying that prior to having an ostomy as there can be issues with that too.

However, in the meantime, Google "low anterior resection." That is when they leave not the whole rectum, but take off the top part of the rectum along with the colon. You said in your above post that what you had was an ileo-rectal anastomosis. Ask them flat out if they took off the top part of your rectum. The normal rectum is 6 to 8 inches long. A low anterior resection shortens the rectum to 4 or 5 inches or shorter. One side effect of a low anterior resection (shortened rectum) is smaller divided bowel moves (as opposed to a few full moves). Ask them flat out how long your rectum is. If it was shortened significantly then that may be the source of your rectal problem (those multiple moves).

But as I said, have the tests to be sure. The defecogram would detect if your rectum had been shortened. If it has, then the report should say something like "evidence of rectal resection found." Meaning less rectal volume than the average rectum.

(Thanks for your compliments on my knowledge of all this. This is the last thing I ever intended to be knowledgeable of, but glad I can use it to help others as long as I have had to acquire it.)

Rosemary
Posted 9/20/2010 4:09 AM (GMT 0)
Hello ladies.....
How i miss you all so much. I will be back posting soon, its just been so emotionally hard (except the wk Allie was here). I am having major major leaking issues. Had two stoma nurses and doctor look at growth and at first they thought it msy be some type of fistula, but they are concerned and they hope Cleveland will have an answer. My two inscisional infections have finally healed. The fast wt they put me on to have a safe surgery has made my indentation from old stoma much worse so i am starting diet tomorrow. We have tried three appliances and nothing makes a difference. We have used paste, eakin seals, barrier rings all to build up the indent. Stoma deformed stea is also a great difficulty. They do (stoma nurses or doctor here) have many other solutions and changing twice a day is really affecting my spirits and more than one has said moving stoma to other side msy have to be my best option and i am very muchin close agreement and if they do i may need some serious plastic surgery on my stomach. I promise i love you all and thank you for still remembering me. I just came home to my condo this evening and its bittersweet. I will post more often now. I need ti catch up.
Please please pray for Allie. Shebis suffering so much more than she lets on and she needs help very soon as i am afraid for her outcome. She is very thin and frail and psin is worse everyday. She will find out tomorrow when she can get into Mayo and hopefully have a much needed surgery. Pray her parents can see how sick she is and thst the wisdom of the doctors will help give her some relief. I am going to be flying out to be with her for ten days deoending on if i need more surgery or when she gets into Mayo. She has kept me fighting inthe end and speaking verses if Gods word and telling me i am beautiful when i feelso lucky so the least i can do is the same for her, for all of you.
I love you all Soo much and if we can get Allie some concrete info it msy help her moms fears and concerns and we need to pull together for her even if we had to write personal letters if the surgery is suggested.

Thanks for never giving up on me and pray that if a seventh surgery is the best option that my body will respond. I am very scared and nervous and Depressed. Love you.
Posted 9/20/2010 4:55 AM (GMT 0)
Lizzie,
Sooooo good to hear from you. I THINK what you had was refeeding syndrome (gaining much weight on very little food very soon) after not having eaten for so long. The same thing happened to me. Your metabolism slowed so that you could live that whole year you were unable to eat. Naturally the weight you gained has changed the contour of your skin and the stoma's placement in surrounding skin. Lose the weight you need to lose before even entertaining the thought of any more surgery as now you have a working ostomy. This is the miracle. The thing is FINALLY working. I fear that another surgery may cause you more complications. If you can eat and eliminate waste, then try losing the weight and go through catalog after catalog of ostomy supplies and consult multiple stoma nurses. each one knows what the other does not. You will not have to lose ALL the weight you gained but just enough to hopefully even out the weight distribution to compensate for the contour of your stomach. They let you go FAR too long before you got the ileo and naturally were likely skeletal thin by the time they made the stoma. You know well more than I of your appliance issues, but that would be my take on things.

You were blessed to have Allie come out to be with you. I pray her parents see the way and she can get fixed up the best that can be done.

You are truly a miracle and I pray for you that you can conquer your appliance issues without further surgery. Try every avenue you can before having another surgery.

Love you Liz as I do everyone else, Good night. Rosemary
Posted 9/22/2010 12:36 AM (GMT 0)

Sarah - Thank you so much for sending the article! That will be so helpful. My mom is a research nurse, so if any studies have been done, she is more receptive to information in that format.

 

I would ask your GI doc for another ultrasound, one that would officially document your dilated stomach and small bowel loops. That information would be beneficial in proving that your problems are not rooted in an eating disorder and that would certainly make your life easier whenever you have a consult with a new doctor. Have they drawn hormone levels on you? If you do have a carcinoid affecting hormone levels, I would hope that it would show up in bloodwork. When did you last have bloodwork done? What values are still affected by the immune therapy?

 

I will absolutely be praying for your appointment with the neuro-endocrine oncologist on Thursday. Please let us know what happens! Even though the finding is not officially documented, I think you should tell them that the doctor who performed your ultrasound did see that your stomach and small bowel were dilated. I know all of this is so draining, but you know your body, and if you feel like something else is wrong, keep fighting until someone takes you seriously and finds what the problem is. No giving up allowed! (And that goes for anyone else reading this too!)

 

cookie- Thanks for your understanding about living at home...things are better. I had a long talk with my mom (my dad can't stomach any medical/health-related discussions), and she is in agreement that I do need help, and that the way things are now cannot be classified as "having a life." I understand her reservations, but I will do whatever it takes to feel better.

 

Rosemary- Lizzie asked me to post a little reply...she was on TPN prior to surgery, so the weight gain occurred before the stoma was formed. Because of that, the contour of her skin has not changed post-op. The weight gain from TPN did not affect the indention of the scar from her first ileostomy, and the bump/growth on the stoma is unrelated. Because of the old scars, the appliances are not even adhering for 24 hours. Thankfully she has her follow up in Cleveland on Friday at 9:00 AM (please pray, everyone!)...they had better bring in an army to figure out what to do for her!

 

I am in the process of getting all of my post-op tests, reports, etc. organized and sent off to Mayo. Because it has been almost three and a half years since I have seen Dr. Camilleri, he needs to review all of my current information, and then an appointment will be scheduled.

 

Hope you all have a good night! Love and prayers to you all!

 

Allie

 

Posted 9/22/2010 1:03 AM (GMT 0)
Hi Allie,

Oh, I see. Thanks for clarifying the issue with Lizzie's situation regarding the fact that she was on TPN prior to the surgery, so weight gain occurred prior to the stoma being formed not after. I see.

I was just talking to Tracy and she said she is looking for an ad she saw in one of those ostomy catalogs that says they can actually make a molded shape of your stomal area and it sounded like could custom design an appliance if you have problems like Lizzie is now having. Tracy is back to work and is trying to locate that info when she has time. I will also contact my appliance company I order from (Byram Health Care) and see if that is something that could be done for Lizzie. Old scars would be an issue with an appliance and 24 hours sure isn't long for an appliance to adhere. Yeah, CC needs that army to figure this out.

Best wishes to you and your appt at Mayo.

Rosemary
Posted 9/22/2010 11:25 AM (GMT 0)
Allie,

the problem is that my hormone levels are altered and seem to be still affected by the immune reaction. The half life time of the immunoglobulins is about three weeks and since I received a high dosis there is still some amount of them left in my body. I am in my 8th week and I thought that after this time period the effect of the immune reaction would have already been decreased quite a bit but obviously this is not the case. Indeed, the levels seem to go up but they are still not the levels prior to the immune reaction. I have not had many hormone levels done yet since I could not convince my GI doc to check other levels beside cortisol and stress hromone levels. When he saw how high they actually were he agreed in doing more tests but unfortunately there was the immune reaction and the levels I had drawn this week are still in normal range. I am so afraid that they won't believe me becuase of these levels.

I may have to wait further three weeks. Then I will be in my 11th week, and then I might have unaltered levels again since then only one sixteenth of the immunoglobulins are left and that's very little. Hoever, we do not know if there might be an effect beyond the actual level of the immunoglobulins in the body. For example, Immune therapy is sometimes used to inhibit tumor growth, so this might be a possible explanation for the altered levels even after the end of the direct impact of the immune reaction.

I am just so afraid....I wish I could explain this to the docs tomorrow and that they believe me...
Posted 9/23/2010 5:11 AM (GMT 0)

Sarah,

 

Praying for a great appointment and that the doctors truly listen to you, take all factors into consideration, that they are very understanding, and that they try their hardest to figure out what is going on. I hope so much that it goes well...please keep us posted!

 

Allie

Posted 9/23/2010 5:20 AM (GMT 0)
Sarah,

Good luck. I hope your docs understand your condition as well as you do. WOW! You have had to gain knowledge far beyond the knowledge I had to gain. Good luck in your presentation. What you said in your post was expressed clearly. If I was versed in your issue I would have understood it. So, assuming the docs are versed in this, just tell them what you said in your post and they should get what to do and when to measure certain levels. Best wishes, Rosemary
Posted 9/23/2010 11:27 AM (GMT 0)
ok, here a short info on how my appointment went... not excellent but not too bad either...

well, it was quite ok. However, I was quite a bit shocked when I saw that they had printed out the reports from the eating disorder unit I was once forced to stay . Unofrtunately, it is still in the pc system, and although there was no definitive diagnosis of an eating disorder it has still a vast impact on how docs tend to take your problems and your personality.

Moreover, it was not the doc who was oringinally planned for the appointment. I guess that was due to my complex issues since the original doc would have been an assistence doc and today, I had the appointment with the superior doc of the neuroendocrine department. Unfortunately, the GI doc colleague who specializes in neuroendocrine GI tumors was not there and I think that would have been better.
Anway, the endocrinologist was quite ok, but I don't have much trust in endos any more after all the negative things and horrible appointments.

A really good thing is that he believed in my explanations about the altered levels from the immune therapy. I can't judge what he really thinks at this point, if he only thinks: well, let's make us some tests to rule it out or if he truly considers my symptom as a result of a neuroendocrine tumor.
I think it is more the former, but I guess at this point this is all what I can expect.

Anway, I have to be in-patient for 2,3 days in which they will do dynamic hormone testing and draw blood to check the levels.
This will be in the end of October and hopefully the effect of the immune tehrapy will have subsided then.
However, it is onlyone stay to rule out such a complicated thing per se, and with me, it is even more complicated so I am afraid that a short in-patinet stay is not sufficient for me, especially since my body reacts and acts differently than normal ones which is part of the impact CIP has on me and I am sure it is the same case with you.

That's why I will try to convince my GI doc to determine the hormone lvels regularly before the in-patient stay to document the course and to enhance the chances of getting a true picture by follwing them some time. A spot light which will be the in-patient stay can actually miss something.
May be I will achieve to convince him to get some imaging done prior to admission. I will need some firm reports in my hands as this will increase my chances during the stay. It is not good when I will have to completely rely on the endocrinologists during in-patient stay.

I will get an heart ultrasound soon, but I was somewhat angry since I could have had it today or tomorrow if the secretary of the cardiologic ambulance would have believed that I was told to make an appointment for an heart echo.
Now, I will have to wait..Grrr.

Unfortunately, the endo unit where I will be in-patient is one of the two units I were already four times in-patient due to sepsis/catheter infection. Last time they accused me of contaminating my catheter intentionally since they could not explain the high frequency of infections I had.
I was pretty shocked when the endo doc today said that he knew me from the unit since I was afraid that he knew about these issues. I don't know what he knows and what he doesn't know but I have no other choice so I will see.

Post Edited (pelztier86) : 9/23/2010 7:43:38 AM (GMT-6)

Posted 9/23/2010 4:57 PM (GMT 0)
Peltz,

Glad this went OK and they at least have a plan. BUT, I learned the hard way, to see what a doc is REALLY thinking, get a copy of your office visit notes. I did not know this at the time, but on the way out of the office, you can just say to the secretary, "I'd like a copy of my office visit notes when they are done." You sign a release and you can then pick them up when they are ready. So often what a doc says to you is different than what they write in their notes.

If the office drags their feet on the records, just request them right from the records office if this doc's office is at a hospital.

AND if you have blood work done, you can just go right to the hospital records office and request results. you don't even have to go through the doc's office.

Good luck, Rosemary
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