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Probiotics after a total colectomy?

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Posted 4/27/2010 12:05 AM (GMT 0)
I am not on a gluten-free diet in general and I also use wheat. However, bread made from gluten is not agood choice for me. I also can't handle rice and potatoes..I don't eat these things at all.. I don't eat a real warm meal (what people would consider as full meal taken one time a day)..do you?

When I went one time on a gluten-free diet I was worse than before as well. I don't think that I have celiac.

If your TSH is low than you have indeed hyperthyroidism/overactive hyperthyroid...so this might be the cause that you can't gain weight easiliy. You should be treated for this since untreated hyperthyroidism can also cause severe problems beside the weight thing like heart dysrythmia etc.
Have you ever had your fT3/fT4 level checked since they are much more sensitive and reflect the situation better? If you you should ask for this.

Are your familiy member hypo- or hyperthyroid?

I think you may be hyperthyroid which usually means a fast metabolism and experience hypothyroid symptoms at the same time subsequently to the malnutrition. So these symptoms are not caused by actual hypothyroidism. Paradoxially you could start to experience less hypothyroid symptoms with a therapy for hyperthyroidism since the absorption and nutritional condition could be improved this way by correcting the overactive metabolism.

Lately I have also hugh troubles with fatigue which makes me very angry and frustrated. I don't know what is going on...i will go to an endocrinilogist to check for a possible autoimmune-disease that could be responsible for the severe fatigue...addison disease.
Posted 4/27/2010 11:33 PM (GMT 0)
No, I don't really eat complete meals. I have to split meals into parts because it's too much to eat in one sitting. So, instead of three normal meals a day, I find that I eat smaller amounts throughout the day. Room temperature foods tend to go down better.

My TSH is not actually low, but it is on the lower end of the normal range. My TSH is 0.97, and the normal range is from 0.5-5.0. My T3 is 31 (normal is from 22-35), and my T4 is 8 (normal is from 4.5-12.5). Because my numbers all fall within the normal ranges, doctors won't treat my thyroid. My mom and my brother are both on medication for hypothyroid. My mom just has hypothyroid; my brother is also hypo, but he has Hashimoto's Thyroiditis, which is an autoimmune disease that attacks the thyroid. They both take Synthroid, and do great with it.

Are you on any medication for your thyroid? Before my brother was put on thyroid medication, he could not stay awake. He was extremely tired all the time, and would fall asleep on the kitchen table during breakfast. That all changed as soon as they put him on Synthroid. So, if you're not taking any medication for your hypothyroid, it could definitely help with the fatigue.

I think the fatigue can also be attributed to the incredible amount of stress that our bodies are under. Our bodies have to work so much harder than anyone with normal digestion, and we are constantly fighting to get our GI tracts to function properly. Sub-optimal nutrition doesn't help, either. For me, the pain often doesn't let me sleep, so between studying for exams and pain, I often don't get enough sleep.

If you can, go see a rheumatologist, and have them run a full autoimmune panel. Tell them to test for every autoimmune disease that they can- Scleroderma, Sjogren's, Lupus, etc. Make sure they do a full ANA titer. That will show if you have any antibodies that are aimed at self-destruction.

Just so you know...I am going up to Michigan this Thursday through Monday (April 29 - May 3) for my brother's college graduation. I don't know how much Internet access I will have while we are there because I'm not taking my laptop with me. I'm sure the hotel has computers, but if it takes me a little while to respond to posts, that is why.
Posted 4/30/2010 12:05 AM (GMT 0)
ok, good to know.. i have very sressful days myself...have to coordinate and plan my upcoming hospital staying next week (bladder re-testing etc)
hopefully you have a good time and have not too much pain..
SArah
Posted 5/4/2010 1:09 AM (GMT 0)
I am so disappointed and frustrated...again the staying has to be postponed due to a UTI. I have been afriad of this, so I went three times to different docs to get my urine tested especially as I was symptomatic. But they only did a fast test which only includes searching for white/red blood cells and they did no urine culture which should show growth of bacteria even after some time and there are less bacteria. Well finally in the third fast test a UTI was quite likely by increased white blood cells.
I can feel the symptoms/UTI arise even before it can be officially confirmed since most of my UTI begin with the urethra and the bacteria take some time before they go up into the bladder and catheter.

Well, they can't do the tests when I have a UTI since this can falsify my test results. I did contact the facility I am planned to get admitted and the doc suggested an antibiosis. Since the last fast test was already done on Friday there was no chance to get a urine culture done which could specify the sensitive antibiotics. I did take some antibiotics according to the last sensitive report from back in January and apparently I have been developing many resistences in the meantime, probably subsequently to the recurrent iv-antibiotics due to the lhickman cather infection.
I doubt if there is something beside iv-antiniotics that is still sensitive.
Anyway the urine is not clear, so the testing must be postponed, it will take place next week but I am almost sure that another thing will counteract this plan. I am so fed up an frustrated. The bladder issue and the infections therefore become a very seroius issue leaving me probably with no other choice than iv-antibiosis to prevent spreading and a new infection of my hickman catheter.

I have waited so long for this staying since my surgery denial in January. I have lived with the hope to go there and to take a step forward.
It certainly begins promising- guess sarcasm and irony is all what is left and I need to survive emotionllay..nonetheless I am physically and emotionalyy so spent, I can't admit that often.

Sorry for venting, I hope you have/had a better time
Sarah

Post Edited (pelztier86) : 5/3/2010 7:30:56 PM (GMT-6)

Posted 5/11/2010 9:15 PM (GMT 0)

Hi Sarah,

 

I'm so sorry that I haven't replied sooner. I usually get e-mail notifications when you post something, but for some reason, I didn't this time.

 

I am so sorry to hear about your recurrent infections. Did they get you on any antibiotics? Did they help at all? NEVER apologize to me for venting!! I understand everything that you're going through, and I want you to be able to share everything that you want to. It is okay to vent and admit that you're exhausted (in every sense of the word), and I'm glad that you did. Please update me on how things are going- have they been able to do any tests yet?

 

The trip to Michigan for my brother's graduation was mixed. It was really good to see the school and the graduation ceremonies, but the GI pain was miserable. My temperamental gut really doesn't like to travel.

 

I saw the new gastroenterologist today, and after looking at all of my records and test results, and a physical exam, he is pretty confident that I do have a rectal dysmotility. We have another manometry scheduled, as well as a sigmoidoscopy to check on the anastomosis to make sure that nothing is wrong with it. Pending those results, he wants me to do about 10 weeks of biofeedback to see if the uncoordinated rectal movements can be controlled. I'm not sure what the next step is after that, but if it doesn't work, then we'll probably go back to Mayo. Hopefully I can keep this pain under control in the interim.

 

Hope you had a better day today. Big hug!

 

Allie

Posted 6/11/2010 10:43 PM (GMT 0)
Allie,   How are you doing girl?  Tell me again how long its been since your total colectomy?  Mine was in Feb 19,2010...what I was wondering is:  how are your bm's now and how often?  Do you get a lot of air in your sm. intestines?  I still am very low on energy, but I take my sub lingual vitamins, but probably not eating enough to give me good strength.  How is your strength doing?  I tire very easily...but oh well.   For the last 10 days I thought I had the flu, it was flu like symptoms with both ends going, and now just really nausiated.  So have you experienced anything like that?  I sweat and chill at the same time with usually no feaver.  Dont know if it is still my body adjusting to the new plumbing or maybe a infection in my intestine?  I just don't really know.  So let me know.  Hope your doing well..

Leslie

Posted 6/13/2010 12:01 AM (GMT 0)

Hi Leslie,

 

My total colectomy was almost three years ago...I was 21. I was going really well for the first eight months after surgery, but after that, things really slowed down again. So it's back to testing and trying some biofeedback. I'm at about two times a day, but I don't get the urge to go, so there's a lot of just sitting in the bathroom.

 

You're still a fresh post-op, so I'm not surprised that you're getting air in your intestines. Those gas pains and spasms are miserable. Do you have any Bentyl, Symax, or Levsin (all antispasmodics)? Levsin you can get as a sublingual if that seems to work for you. I think Bentyl works the best for me, but it also puts my brain to sleep, so I can't take it if I have any driving or thinking to do, or intelligent conversations to partake in!  Small bites of food, chew really well, don't gulp anything, don't chew gum, and stay away from anything carbonated. I didn't touch lettuce for a full two years after surgery, and even now I only have it on rare occasion. Apples, applesauce, and apple juice all cause gas issues for me (the ratios of the different sugars in apples can actually cause problems for some. From what I've read, white grape is the easiest juice to digest).

 

Do you feel like the air in your system is from food or maybe swallowing air, or does it just kinda happen? If you can't pinpoint anything you might be doing wrong, you might want to try a round of Xifaxan. It's an antibiotic that targets the gut, and can be used for SIBO. Most people who use it only get some relief the first time they use it. Subsequent rounds didn't help me.

 

My energy level hovered around zero for a good six months or so. I wore out very quickly (still do, to an extent, but that is in part due to continuing pain and sub-optimal nutrition). That's all normal. Stay hydrated, and try to keep up on your calories. Believe me, I know how hard that is!! Rest when you need to. Put your health first, and don't push beyond what you can handle. I didn't have any flu-like issues...do you think it was the flu or food poisoning, or do you feel like something is going wrong inside? I've had my share of nausea, but nothing flu-like. I do tend to run hot (with sweat)/cold, but more cold than hot.

 

Allie

 

Posted 6/13/2010 12:28 AM (GMT 0)
Allie,  thanks so much for replying.  Still feeling crapy but not too bad, able to eat and keep things down.  Guess I just have a bug but If I get any worse I will go to the ER.   I try to avoid

the hospital if at all possible.  For about a week my intestines burned and felt like I had drank acid, and that is not so bad right now.  All in all I can't complain, I eat and then when the bubbles move I poop.  I cant strain really and dont attempt it ....I get swollen sometimes after I eat but I just wait and when it ready it comes out.  I am the same way about the food I stay away..ate salad one week a few times and boy was that a mistake took me a week to get back to normal...very painful to pass lettuce is.

I know my eating and nutrition is sub-par also but I take vitamins and stuff to help. 

You dont have any problems with Constipation do you?  I dont at all.  I am so thin that its funny just how aware we are of our intestines and really feel where stuff is at...verses to being heavy once before and never noticed my intestines.  That I am sure was due to when I was not symptomatic.  Well went to walmart and got 2 things and came right back home and too worn out, so cant even sit at the pc right now.  So keep me up-dated on how your doing and I will take any little bit of info you can give me on this new journey ....Much appreciated.

Leslie nono

Posted 7/10/2010 10:28 PM (GMT 0)
Rather be riding,
I am having a lot of the same problems you are. I had my total colectomy w/ileo-rectal anamastosis back in 2008. I also have food intolerances with gluten, wheat, lactose, MSG, and fructose, as well. I was doing okay for almost a year, then back in Feb. 2009, my diarrhea has gotten worse. I have lost even more weight than when I had the surgery itself. On top of all this, in September 2009, I was exposed and dxed with Lyme disease, but my G.I. issues were problematic for a year before I was exposed or diagnosed. I am currently going to a G.I. in Boston, because my current G.I. has no idea what is going on. I have been tested for every bacteria, celiac, and other things and nothing shows up. The Lyme did not really do anything, since it has been the same as it was before my exposure. Everything goes out as quickly as it came in. I also have a lot of G.I. pain, besides the other muscle and bone pains from Lyme. I have no physical energy, but due to my Asperger's, I live my life, but not to the fullest anymore. Well, good luck with everything.
Posted 7/10/2010 10:46 PM (GMT 0)
psygirl6
I too stay away from all those food and stuff.  I am not celliac but my son is and he is having intestinal problems as well.  Today is the best I have felt since the 22 of June.  So hope that it is just in a mood and will work itself out.  I cannot tollerate the heat as I get dehydrated to easily, and its been over a 100 every day.

Tomorrow I am going to my sons ranch and hope its cooler so we can take the horses out for some exercise.  So I would rather be riding too...LOL  Sorry that your having so my problems.  If you have diahrea have you tried some Imodium?  I am doing everything in my power to put on some weight but its not happening.  But my doc said I would not gain any..so there you go...I am in a size 8 and everyone tells me how good I look...oh well tht is with clothes on.  My body is a road map of scars from all my surgeries...so my body is no a Wonderland as the song goes.

Hope you feel better and keep in touch.

Leslie

Posted 7/10/2010 11:06 PM (GMT 0)
hi honestwoman,
Thanks for the advice. I tried everything immodium, bulk fiber and every liquid powder and other prescription. Unfortunately, I have trouble digesting any type of oral medications, which is also why I have to wait for my Lyme disease antibiotics to be IV given. It was even proven because when i first got Dxed, I was on both liquid for of dioxocyclin for the whole entire 10-14 days and nothing worked. That is why I have gotten worse. Pills I definitely cannot digest, nor capsule, as the whole thing gets passed out of my rectum. Now, every time I need medications, I got to the hospital and get them injected. I am probably thinking it is a muscle thing, where the muscles of both stomach and intestines may be moving too fast or damaged, if not by Lyme, but something else. But no one is checking that. I know because I have taken anatomy this past year in school (got an A in it), and know the whole system. The digestive system, besides the Histology (tissues of all the body parts, muscles, organs and bones) was my favorite part of anatomy. I was studying that stuff forever. I also am doing everything in my power to put weight on or to at least stop losing it. We are now talking about TPN, plus with all of my intolerances, it would not be a bad idea. Plus, the heat does not really bother me because I am always cold. Unfortunately this stomach issue happen no matter how cold or hot it gets. This is just been constant non-stop since Feb. 2009 and it is not getting better. Well, I hope everything goes well for you. Have fun at your son's ranch.
Posted 7/11/2010 1:17 AM (GMT 0)
psygirl6
My gosh that is just terrible.  Ya, I canno't digest pills either I have to have the liquid or a sub lingual tab...so most of mine are the sub .....I hope that they can help you and figure out just what is going on.  Its just horrible after you have had the operation to make you better that you are doing not very well.  I guess in the back of my head that is one of my fears, I had this surgery to give me back my life...  So far today I feel pretty good so hope that everything goes back to normal or as normal as I can  be with the surgery.

I will keep you in my prayers....much love sending your way...

Leslie yeah

Posted 7/12/2010 12:00 AM (GMT 0)
Thanks Honestwoman. Sending love your way, as well. It is one of those lesser of two evils. you could be constipated all your life and have stomach explode, or you could live with diarrhea. I am starting to think that I should have had the bag because I would not have to worry about wearing diapers because of diarrhea. Plus, I would not have to worry about rectal bleeding or feeling like passing out. Well, I hope you have a wonderful day.
Maya
Posted 7/14/2010 2:09 AM (GMT 0)
Maya  I just got out of the hospital again for 3 days...got endocardititis...laying down now/.
Posted 7/14/2010 2:47 PM (GMT 0)
Honestwoman,
I am sorry to hear about your hospitalization. I hope you get well soon. I will keep you in my thoughts and prayers.
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