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Posted 3/18/2011 8:04 AM (GMT 0)
confused

Good Morning. Brand new on this informative forum and so glad i found it, but not new to digestive problems. i am 60 years young and have had problems since i was around 16 years old and STILL looking for answers and releif. I have always alternating between diareha and constipation, mostly c. unless i eat something that i have a reaction to and get explosive d with some blood. But the biggest problem is being underweight. always been bpney thin all my life but since i went post menopause i have REALLY WENT BONEY SCARY SKINNY. I have had all the digestive tests done and all blood work. the only test i have not have done is the colonscopy. I have asked several drs over the last ten years to give me a prep that does not cause me to be so violently ill and no dr can do that. have had the endoscopes (3) and the last dr said that he thinks it might be food intolerances or crohns!!! had the 72 hr stool test 2 weeks ago and waiting results. i eat at least 3000 calories or more a day and dont gain an ounce and scared out of my mind. to put it bluntly i think i am dying a slow death. i dont think i will be here much longer. i cannot get no dr to help me and listen. I am going to University of Michigan hospital for all these tests and you would think they would find something. I will be preparing a will or trust soon for i dont think i will be here much longer. i have NO FAT ON ME AT ALL AND ALL BONES ARE STICKING OUT. I am 5'6 and weigh 100 pounds and no muscles mass. please, if it is crohns or ibs, ibd is this normal to be so skelaton thin. this forum is my last stop or i give up. i have been looking for an answer since 2004. i am half the size i use to be. shrinking over the whole body...went from a size 12 to size 2. i pray every night for god to help me find answers. thank you

*Gave your post a title*

Post Edited By Moderator (Nanners) : 3/18/2011 7:35:30 AM (GMT-6)

Posted 3/18/2011 8:36 AM (GMT 0)
Hello and welcome

I can't answer many of your questions but I can say that with crohn's(if that is what it is) you can be either severly underweight or overweight and you can suffer either with constipation or diahorrea. DS was 5'5 and weighed 93lb when he was diagnosed(constipation as opposed to diahorrea), since diagnosis and treatment he has gained approx 42lb!

I don't know enough about all the various tests(sure someone will be along to advise soon) but I believe that a lot are diagnosed after colonoscopies/biopsies.
Hope you get a diagnosis and more importantly some treatment soon.
Posted 3/18/2011 9:03 AM (GMT 0)
THANK YOU THANK YOU for the quick reply!!! that in itself has brought alot of relief. i know the colonscope is the answer...just need a different prep. i was told that dulcolax and miralax would not make me so sick...and i can take the prep for 2 days instead of the one day. and i need to be knock out completely. how did your DS gain the weight back. i just need some hope for the future and to know that i will gain this back and look normal and not some bag of bones. it looks so ghastly and scary to look and feel like this. just need to know i will get thru this..how long did it take DS to gain the 42 lbs back. hopefully get test results back next week for the 72 hrs fecal test and see if i am absorbing or not. yes i do need treatment very soon!!!!!!! like yesterday.
Posted 3/18/2011 9:44 AM (GMT 0)
When I had my colonoscopy to dx the CD, I was very ill with the bowel prep. Very explosive reaction both ends (sorry ITMI) but think sometimes you have to bite the bullet and think it is only for day or so and that after you will hopefully have some answers as don't think any doctor would be willing to dx Crohn's without a scope of some sort and most will require pretty full on bowel prep so they can see bowel and take biopsys.
Posted 3/18/2011 11:23 AM (GMT 0)
I guess that gaining back the weight was down to a diagnosis and trial and error with different medication. He was on total enteral nutrition(liquid feed) for some 7 1/2 weeks to try and stop the flaring but that in itself didn't happen and he moved onto the drugs. If I recall correctly he gained about 1- 2 lb whilst on enteral nutrition, then maybe another couple of pound during the next few months (nothing major at all) then probably about the 8 month mark had started to gain in excess of 5 lb and from there it has steadily increased(diagnosed 16 months ago)
I think initially the body had become so starved of nutrition that everything he was eating was being used up and now that he has 'caught up' the food that he eats can be stored.
Obviously they need to find out why you can't absorb what you are eating, find treatment that will allow your system to become efficient in utilising nutrients and then you can start fattening up ;)
Some people find that particular foods are not good for them and steer clear, equally what one person can eat is an absolute no no for another. Some stick to low residue or SCD eating,others may need to avoid fatty or high sugar foods. Son basically ate as much as he wanted of whatever he wanted, burgers, fries, crisps,pasta,pizza,eggs,fish. Not overly 'healthy' for a 'normal' person but dietician wanted him to gain the lbs by whatever means posiible.
Fingers crossed for you
Posted 3/18/2011 12:03 PM (GMT 0)
It took several months for me to get the correct diagnosis back in 1989, and when they finally did, I was hospitalized for 2-3 weeks, mostly due to malnourishment. I had an IV feeding into my chest and was given IV steriods. I checked into the hospital at 90 pounds, and within a couple of months I was up to 150-160 pounds.

Hospitalizations, colonoscopies, etc aren't much fun, but the short-term inconvenience/discomfort/etc are well-well worth the long-term benefits of getting a diagnosis, putting the weight back on, and feeling much better.
Posted 3/18/2011 1:08 PM (GMT 0)
It took me five years of actively seeking a diagnosis (after many years of avoiding doctors) to get a diagnosis--which only happened because I needed emergency surgery. One way to minimize the horrible colonoscopy prep is to go on a clear liquid diet for several days before the procedure. If you can do that, then you have almost nothing left in your system, so you can do a very very minimal prep. I've done that for my past two colonoscopies, with no complaints from the doctor doing the procedure. You'll be weak and hungry, but you'll avoid drinking gallons of gross prep solution or huge handfuls of horse-sized pills.

You'll be in my thoughts. I hope that you get a diagnosis and that something can be done to make you feel better and gain some weight.
Posted 3/18/2011 1:39 PM (GMT 0)
Hi Islandgirl1 and welcome to Healingwell. You really need to get a colonoscopy to help with a Crohns diagnosis. All of us have a hard time with the prep, so you are not alone. I have heard folks say that the Miralax prep is pretty simple.

But...you really need to get thru the prep in order to find out whats going on with you. When I was first diagnosed, I too spent over a week in the hospital because of malnutrition.

Once you get a diagnosis and get on the right treatment, the weight will start to come back. You can also add in some Ensure or Boost into your diet to help supplement some.

Good luck with your scope and I hope it provides the answers you are seeking. Hugs!
Posted 3/18/2011 1:59 PM (GMT 0)

hey girl. so darn sorry, really. I'm 60 as well. You have to try to get thru that colonosc. cd can cause severe weight lose. If it was me, I would try to fast, then only drink 1/2 that prep. but you need to fast at least 36hr's prior to starting prep. You have to be your own advocate at this point, please,please don't be a statistic. Do you have loved ones around?

AG

Posted 3/18/2011 3:25 PM (GMT 0)
I agree with the others that you really need to just plug through the prep and get the C-scope done. But I didn't notice in your post if you have had a pill cam done? It might be another thing to consider and one that they might be able to piggy back onto your C-scope since it can see areas that the scope can't and some doctors do want a prep for that test too. I have had it done several times and sometimes with prep, sometimes without.

As for putting the weight back on, it is just a matter of letting your insides heal so that you can absorb nutrition. If you have degraded enough the doctors might want to put you into the hospital for some TPN or other form of nutritional support to give you an initial boost. But once you have healed the weight will gradually come back. Unfortunately there is no easy fix.
Posted 3/18/2011 4:53 PM (GMT 0)
Hi. I'm sorry you are feeling so poorly. When my husband was initially diagnosed he lost 50 lbs, and went from 175 pounds to 125 lbs when I brought him home from the hospital (he's 5 feet 11 inches). He had developed foot drop from losing so much weight and damaging his peroneal nerve bundle in his leg. When he first came home, his resting heart rate was 100 bpm, and if he moved around it went to 150. Taking a shower for him was so very exhausting. In fact for a couple of weeks, I needed to get in the shower with him and help him, so that he didn't fall over.

The diagnosis for most people is the most trying time. I agree with others that you just have to push yourself through the prep, so that they can do a colonoscopy, get some biopsies and find some answers for you. Once they know what you have, they can begin treating you for it, and hopefully with the right combination of meds, you'll begin to feel more normal and start absorbing food and get to a better nutritional status.

For my husband, when he came home from the hospital, he was on high doses of steroids, which in itself increases appetite, and makes you put on weight. He went back to 175 lbs in about 5 months - but the weight didn't go in all the right places. He used to be muscular and very strong, and the weight just went around his belly for the most part. Over the past couple of years, with a good exercise regimen, he's managed to redistribute the weight so that he isn't flabby.

So, once you start feeling better, be sure to do some strengthening exercises to build muscle mass in addition to just gaining weight. I hope you get some answers soon, and start feeling better.

PV
Posted 3/21/2011 2:28 AM (GMT 0)
My wife has had 4 (maybe 5?) colonoscopies in recent years and the prep is usually pretty bad. She's found ways to down the drink (8,500 gallons of Moviprep, it seems) and actually has learned to pre-prepare a couple of days in advance to make the prep a bit more tolerable. I think this last time (Feb) was more bearable due to this.

That said, I will join the chorus of "push through the prep and get the colonoscopy" since it will help your doctor out a whole lot in diagnosing you, setting a baseline for where you are today, as compared to future colonoscopies (yes, did I mention that this won't be your last?) to help monitor how you are doing.

And from an academic perspective, if he takes photos of your insides, it's kinda neat to be able to see what he sees, where the inflammation is and stuff like that. Unless, of course, you're squeamish about such things, in which case, it's better to just think of puppies and bunnies frolicking in a meadow. :)

--J

P.S. Can't wait for my first colonoscopy when I turn 40. Whee!! (I'm just kidding. I'm not that excited, but my better half says she reserves the right to laugh her a** off when I do my prep.)
Posted 3/21/2011 6:12 AM (GMT 0)
smilewinkgrin
Good Morning


A Big Thank you for all the kind replys and wonderful advice. It does ease some of the anxiety of not knowing!!! Ha my drs. office call and asked if i would like to come in this tuesday instead of April 5 !!!!!!!!!! I said sure .......i want this done and over with..cause then i get the results of the 72-hr fecal test,to check for malabsorption and other things i hope. Also results from the endoscope last month which I Bleed out of my nose and rectum that night......grrrrrr!!!!!which they literally choked me and had to use a pediatric scope and took a biopsy for celiac....which for the last 2 years this is what i thought it was. grrrrrrrrr..... just want the dr. to give me some pills to stop the inflamation so i can gain 50 pounds or so. i know this sounds to easy right?? ha ha

HI Nanners, Thank you for the warm welcome. It great to know I have somewhere to go and chat with everyone who knows what is going on!!! yes I do need to get that scope and soon. The Dr. did mention he might put me in the hospital for a couple days to do the colonoscopy I need to be on a IV drip of cortisol ( steroids) before the scope. I also have adrenal insufffiency..had my right adrenal gland taken out last year, so i am still recovering from that. Surgeon said all my organs are laying on top of each other cause there is no muscle mass to support them. When i go see the dr. tuesday i will tell him i need TPN or something else to bring me back up around. like my husband said i i am at the brink of starvation. i dont think a scope is good right now until i can get some strength and weight and muscle. My body has already used all fat and muscles so all that is left are organs.

Dr. said there is lots of reasons why i would not be absorbing......but what he dont understand is that there is no time to try and go thru all reasons. i hope and pray i can get him too do something Now.

When and if i get to take the test i will eat lightly and only take half of the prep...that is the only way i see doing it too. unless i do have to go in the hospital for a couple days which sounds like the safest thing to do.

THANKS AGAIN EVERYONE smilewinkgrin I am still in shock i got so many replys!!!! yeah yeah Hope i made sense with all this. trying to prepare for tuedays appt. with lots of questions and need answers

Peace
Islandgirl1
Posted 3/21/2011 2:00 PM (GMT 0)
Good luck! And know that you'll be in our thoughts on Tuesday. Let us know when you get a diagnosis and some treatment recommendations, ok?
Posted 3/22/2011 5:22 AM (GMT 0)
Hey nawlinscate, thanks.....cant wait until the appt is over with!!! The drs. office did call today and gave me the results of the 72- hr fecal test and it was normal..for the malabsorption at least. So there has to be another reason for not gaining the weight. crohns, ibs.... My idea is to take some pills for the inflamation, give me TPN, THEN the colon test finally. but i bet the dr will not agree with this.... they never do. So i dont know what to say to him...if only they would listen we could cut to the chase rather than wait a few more months which i think would not be advisable. sad nono

I will post tomorrow night about what the docs next plan is. I am so hoping and praying that he will know what to do. its gonna be a long day I know. long trip to hosp. and i always get lost confused rolleyes nite!!
Posted 3/25/2011 4:31 AM (GMT 0)
Hello Everyone!!!!!

Well just a report on how the Drs appt. went on Tuesday. It was a complete waste of my time and any hope to get better ever. I was basically blown off by my dear dr. He said the 72 hr fecal test was good and i did not have malabsorption and for me to start back at my primary dr. He did not know why i am sick and lost all this weight. He did not even seem concerned that i needed to get a colonoscope and it was a emergency that i get some weight on. I mentioned maybe tube feeding and he said NO its to dangerous!!!!!!!!!!!!!!!!! Is it? I am so mad at him i feel like going to the Chief of Medicine at the hosp and report this guy. He did not even try to help or suggest what to do next. there are lots of ways to find out why a person is not gaining weight. I tried to get some meds for inflamation of the intestines and he said NO again that i dont need it. Blood tests were all normal except vitamin d, calcium and i have high vitamin b-12..probably from all the protein i ate trying to gain so the absorption test might be right.

Dr. thinks ,cause i dont have diareeha and have normal BM most of the time, that i am fine. Did not mention crohns, IBS, IBD, or colitis. The only time i do have diareeha is when i eat something that dont agree with my gut like spicy foods, or gluten foods. So far i have been to 2 gastro. 4 endos in the past year. I do have adrenal insuffiency and take steroids for that and dont gain weight either. and it looks like i am not celiac either according to the endoscope

SOOOOO I am back to square one now....dont know what to do from here. All i want is to gain weight so i can get that darn test done. Oh yeah he was also suppose to put me in the hosp for the scope but he change his mind.....!!!!!!!!!!! What???? what kind of dr tells a patient that they dont need the test or try and help find out why she is not gaining weight!!! All he said was that i am not EATING ENOUGH. LOL i told him that i eat 3000 calories a day and he said i was not ,according to my food journal i kept for the 72 fecal test. hmmmmm at my wits end. he said i added the calories wrong!!!!!!!!!! grrrrrrrr dont know if he is making up stories or if he is just plain stupid!!!


thanks for listening to my rant....still upset and this happened Tuesday. grrrrrrrrr
Ha i was right when i said he would not agree with me (look at previous post) .......i just knew it....will use my own intuition from now on.

shocked shocked shakehead shakehead nono
Posted 3/25/2011 12:37 PM (GMT 0)
I used to go with a girl named islandgirl, so I feel we have a bond already.

Also although I did not have the weight issues that you are dealing with I like many here did struggel to get a DX.

It seems that what you need is to no longer get the run around. And I am sure it must be extra extra tough to battle this yourself.

You need an advocate. Someone to speak for you. The following is for your consideration

1) Do you go to church and is there someone there who will support you and be your advocate. I know in my church if you asked for help you would get it

2) Can you reach out to family. You really need support, will they advocate for you, if only on the phone

3) Have you considered going to emergancy and letting them know you are not going home without help. My sister is a chaplin at a hospital. If you saw her and told her this story she would advocate for you. I think is some hospitals there are patient advocates, others know more than me.

3) Perhaps you should post what city you live in, and maybe someone here lives near by and can recommend a good GI. My doc was the third I saw. Even though the intial tests were inconclusive, some saying I 100%  for sure did not have Crohn's and others saying maybe, she kept at it. I had almost every test, but its was the last test, a pillcam that gave me the dx. I would not be being treated if she did not keep at it. Maybe someone here can recommend a good doc. I live in Atlanata, my doc might not be the best but if it is a GI issue, I would bet she would fnd it (even if it takes more time than you want)

Long post, but we are thinking of you and wish this to be turned around

((((hugs)))

Dave

 

Posted 3/25/2011 11:32 PM (GMT 0)
hey dfdavedf

Hi and thanks for the reply. LOL LOL yep there is a few Islandgirls around i found out. I adopted this name from going down to the caribbean islands. trying to get better so i can get back there...hopefully soon

Yes you are right,,, I am truly getting the run around from these drs for the past year. Keep thinking this is it and they will not find anything or try to DX before its too late

Oh yeah i do need an advocate. I do belong to a church but have not gone in awhile although i do pray and talk with our loving Father on a almost daily basis. He pulled thru that operation last year to remove the adrenal gland, I really believe he was with me always. not sure if church would help me or not. I doubt it though.

Nope no big family, just 3 sons that are grown and gone and a unsupportive hubbie that does not care. Parents are gone and siblings dont care either so yess i am basically in this alllllllll by myself.

Oh yeah this week i thought of going to the hospital and just stay there until i get answers. I will check out the advocates for my local hosp. next week for I have a physical therapy appt to try and straighten out my posture. and bone density test,,,and try to build some muscle with what i have left on me.

I do live in Michigan and went to University of Michigan hospital for all my tests and operation i had. they are suppose to be one of the TOP HOSPITAL IN THE NATION. I know there is a woman on this forum named GAIL that seen a GI at this hosp but dont know how to get a hold of her. wanted to find out who she went to and her experiences with this hosp. still trying to figure out how to find my way around this forum still and how it works.

just afraid that by the time i find a DX it will be to late. Have had a ct abdomen test,,barium follow thru,,3 endoscopes, which the last scope just about killed me. they had to use a pediatric scope to get a biopsy. all organs are laying on top of each other cause of no muscle to support them.

wondering about the pill cam!! how big is the pill???thought of this too but have swallowing problems, sometimes cannot even swallow food. I know i am a mess. it is so crazy that i cannot get a dr to help me. its like they want you to keep coming back so they can charge you more money.

again i think i will use my own intuition and do what i think is right and stop listeneing to these drs. I know they are not helping purposely for i do know what is going on somewhat for i have been researching for hrs everynight for the last 2 years i know they are lying or just dont care

thank you again for the post long post too lol lol just so frustrated

Islandgirl
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