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Posted 9/1/2009 7:41 PM (GMT 0)
Hi everyone.  This may sound a little all over the place, but I really need help in understanding some of these medical terms and what you guys think is taking place etc.. until I'm able to speak to my doctor next.  I have my CT scan here and what the Dr's wrote from my last 2 ER visits this last month, so please help me if you can.  AND YES, I know you are NOT doctors!  I'm only asking opinions.  Thank you- 

First, 3 weeks ago I was shown to have PNEUMATOSIS in my colon wall on a ct done in the ER.  Initially the doctor said I had shown Illeus, and they wanted to keep me overnight for bowel rest and then I explained to them I have chronic illeus every night as one of my major health problems, along with many others... so they let me go home and told me to stay on liquid diet.  The next morning, ER called and said they just found i had pneumatosis and if i got bad i should come back to the hospital, and this was very serious.  They said they would NOT have discharged me, but it was their fault.

This weekend,  I had THE MOST MOST AWFUL pain I ever had in my life.  I really thought I was going to die.  I thought my colon finally burst and this was it.  My family carried me screaming and crying into the ER with about 80 people waiting and they took me right away and did another CT in 10 mins.  They could not get the contrast because they couldn't get to my veins, but they still did one.  This CT showed worsening of illeus PLUS WORSENING OF AIR IN MY COLON--PNEUMATOSIS AGAIN and they said it has gotten worse, yet they couldn't do a surgery because nothing "ruptured" or bursted yet.... They would not let me go home and kept me overnight ONLY TO SEE A SURGEON THE NEXT MORNING.  Next morning, another dr. comes in my room and says you are inoperable anyways because nothing is completely tore, therefore you don't need to see a surgeon.!!  What??  So they released me again and said how serious this was and to go back..  So now, I'm like a walking ticking time bomb waiting to explode and i'm stuck.

I wanted to know if you guys understood these terms also...I can't find them on the internet. 

What does ---"ab is moderately protuberant WITH TIMPANI?"

Also, has anyone heard of ---CHRONIC-IDOPATHIC INTESTINAL PSUEDO-OBSTRUCTION SYNDROME?

what is pneumoperitoneum and pneumatosis coli?

- To have multiple air-fluid levels in small colon and bowel w/ abundant stool in colon?

- Distended moderately urinary bladder

-Pelvic Ascites

I know these are tons of questions, but please, any of you who can help me and hopefully answer some of these and help me figure out what the heck to do in regards to me having air in my colon.. how serious is this?  My GI still doesn't think I'm a canditate for surgery unless I blow-up pretty much.

THANK YOU TO ANYONE AND EVERYONE WHO CAN HELP ME.  I'M SO SCARED AND LOST!!

 

Posted 9/1/2009 8:06 PM (GMT 0)
Can I just try to interpret what is said rather than get into all the terms. What I read is that there is an obstruction but they don't actually see the cause. It is possible that your bowel is receiving mixed (electrical) signals and is having problems. If I had to guess its because of electrolyte imbalance. (Electrolytes are like salt and calcium and potassium, and these are having problems). I don't know what is high or low so they should do a blood test to see. ok. There is evidence of bloating/gas and your bowel is swollen.
Posted 9/1/2009 8:32 PM (GMT 0)
thank you for your help. yes, i am low in my salts, carbon dioxide, hemoglobin and red and white cell counts. do you think this is serious?
Posted 9/1/2009 8:56 PM (GMT 0)
Also, a couple more things..

what does TIMPANI mean? I can't find that anywhere! And does anyone know what could cause PAIN LEVEL 10 like that for hours? Is that the gas leakage? If you have air in your colon.. how bad must you get before they do something? Isn't it bad to just be walking around with a perforation like this? My doctors and ALL THE HOPSITAL docs and ER docs have no clue what to do with me... this is so frustrating.. sorry, guys-- i'm just lost!
Posted 9/1/2009 8:57 PM (GMT 0)
gut leakage is common in crohns and it is serious if the leak becomes perforated to the point where the stool enters the abdomen. The body fights the leakage and so your white cells are high. You need to slow down your intake so you don't put more pressure on it from eating, so liquids only for now if the doctor said it was ok to have some liquid. If you are in really bad pain you need to go to ER to make sure its not perforated. For the future you also need to consider a celiac type diet. You can look that up ..its basically no foods that have gluten so that takes alot of carbs oot of your diet, no pizza no breads. here is the forbidden list:
http://www.celiac.com/articles/182/1/Unsafe-Gluten-Free-Food-List-Unsafe-Ingredients/Page1.html
so dont even consider eating any of these foods.
Posted 9/1/2009 9:01 PM (GMT 0)
MEDCHRT-

I have Eosinophilic Colitis as well which makes me unable to eat mostly ALL FOODS. its a very rare, yet severe disease to where your body is basically allergic to all foods and the only way to control it is to stick to a diet of 3-4 foods, which I do. So i basically eat nothing the way it is. Can this get worse, you think? between the first CT 3 weeks ago to this weekend, CT showed worsening of pneumatosis. what would cause that pain?? That was worse than anything!!! Have you had this before?
Posted 9/1/2009 9:02 PM (GMT 0)
Mostly the pneumo- and timpani just mean that you are full of gas. The gas derives from bacterial action. The pseudo-obstruction syndrome is odd. Idiopathic just means no observed cause, but since it is a pseudo-obstruction, it is not an actual obstruction. The result is the same though - no peristalsis. It sounds like there is some problem with your peristalsis resulting in little or no movement of your bowels. The lack of bowel movement allows bacteria to overgrow, producing gas and bacterial toxins. This kind of bowel paralysis can be caused by pain (sounds like a fair possibility) or by nerve damage (as in diabetes or scleroderma).
Posted 9/1/2009 9:15 PM (GMT 0)
You said you're low in salts, can you be more specific...Is your potassium low? You might need to post your current meds. Are you on cipro? if so what dose. what else do you take.
Posted 9/1/2009 9:44 PM (GMT 0)
You left me hanging my friend..you could post your blood test numbers also so we dont give bad advice. glucose number also. good luck
Posted 9/1/2009 10:44 PM (GMT 0)
Oh, sorry.. my potassium is fine. Its just the sodium directly that was low along with my hemo and rbc/wbc.. they wanted to keep me to see if i needed a transusion since I was at an 8 level, but I was discharged with the intention of getting my labs redrawn again, and that was yesterday. i've already had 4 transfusions and me being anemic is normal.

i'm not on any meds besides pain and prevacid and sleep because i'm allergic to steroids and anything like remicade my docs are not wanting to put me on due to my many other GI issues and its too riskly with my health problems.
Posted 9/2/2009 12:26 AM (GMT 0)
ok I dont have much else perhaps dont overdo the prevacid... Having some acid is needed for digestion so that the food doesnt go undigested into colon. So if you have some blockage from undigested food you would want that to clear.
Posted 9/2/2009 5:57 AM (GMT 0)
You need to clear out your gut. The lack of movement and all the gas is creating a toxic bowel and a severe bacterial overgrowth. The eosinophils are being drawn to some source of immune system trigger and that could be food proteins, bacteria or allergens. Try a day or two of liquid diet with any foods as predigested as possible - clear broth only to start or water, followed by overcooked food, or better, an elemental diet (you would need to get help with this from your GI). You seem to be aware of the dietary angle and its central role in handling your symptoms. You might want to have a look at the info on this page: American Partnership for Eosinophilic Disorders
Posted 9/2/2009 4:07 PM (GMT 0)
Keeper, wow- you know a lot about eosinophilic disorders, it seems. Most people usually don't. I actually am on the elimination diet, thats why i cannot tolerate more than 4 foods. I'm already a member of the website you told me about, so thank you. I'm more worried about this air in my colon that the surgeons even in the ER are telling me how serious, yet they can't operate..... i mean, i'm confused, lost and stuck.... is this really not this serious you think? can food actually tear up the pneumatosis even more?
Posted 9/3/2009 5:36 AM (GMT 0)
The air in the gut wall (pneumatosis) is a problem - it is causing leakage of blood fluids into your abdominal cavity (the ascites they mentioned) and it may be interfering with the blood flow to your intestine which can be fatal. I can't believe that they sent you home with a diagnosis of ileus - basically saying that your small intestine is not passing bowel contents on to the large intestine, effectively a bowel blockage. Sure, emergency surgery to repair a rupture is not required, but they offered no treatment for the other problems? I would have thought that they should be doing tube feeding or IV nutrients to let the gut rest. You need to talk with whoever is directing your elimination diet and say that you are worried about the ER reports and want to consult about the need for enteral or parenteral nutrition for a time.
Posted 9/3/2009 4:30 PM (GMT 0)
in regards to TPN/Liquid diet/IV nutrition... my doctors DO NOT want to do this with me and have explained thoroghly to me why.. because of the complications that come with it are too much for me like electrolyte imbalances, infections, PIC lines that would blow my veins, since I have none plus a ton of other stuff. They do not feel it would help me in the long or short term and don't want to do this at all. They don't even want to do a colonoscopy..

the hospital did make a huge HUGE mistake on their end for even discharging me without a surgeon consult. that was the whole reason they kept me. Now i'm seeing one next week per my GI on an outpatient level, and until my situation becomes ACUTE, they will not operate on me. so i'm basically a ticking time bomb....
Posted 9/3/2009 8:47 PM (GMT 0)
Sorry to hear that you are so fragile. Surgery is always a last resort in my view. However, it does have its place. In regard to your veins - you should try drinking an electrolyte mixture in large amounts. The rationale is that you need to plump up your veins for several reasons and extra fluids will do that. Usually, shrunken veins is a sign of dehydration and it causes high blood pressure which results in kidney problems and a bunch of other bad effects. Look for an electrolyte mix that has dextrose rather than sucrose, because you would not absorb sucrose. Try phoning your pharmacy for suggestions. I wish that I had more to suggest, but the elimination diet is almost the only alternative to surgery.
Posted 9/3/2009 8:52 PM (GMT 0)
Hi keeper!
Thank you again for your suggestions. I am currently on the elimination diet and thats why I'm only able to stick with about 4 foods. I drink Pedialite, however..like its going out of business, so I do get my electrolytes that way. My blood pressure is always very low..usually 82/56.. something like that so I don't have to worry about kidney problems. Why is surgery a last resort? See, thats the part I don't get. I mean, if surgery can help you.. why not? I'm just totally all confused!
Posted 9/3/2009 9:43 PM (GMT 0)
Surgery in this case will be likely to result in the loss of some of your intestines. There are consequences from that due to reduced absorption, loss of sensory feedback (there are sensors in the gut that regulate peristalsis and losing them messes up digestion), scarring, deficiency-related problems and so on. Once you start that process, it often requires more surgeries.

Pedialyte looks fine for sodium and potassium, but you also need magnesium and calcium.

With that low blood pressure, I wondered if you have been tested for Addison's disease. One possible feature of Addison's is an increase of eosinophils. I don't know if this could be related, since just reading about it does not tell me about the distribution of the eosinophils.
Posted 9/4/2009 1:58 AM (GMT 0)
You are very intelligent in these matters... What health issues are you goign through? Have you had surgery yourself? Yes, I have heard once you get a surgery it will require more... why is that? And quite honest, everything you mentioned such as malabsorption, perisalisis and everything else, i already have and i've never had surgery so.. i dont know. Does it usually require a long time in a hospital? My blood pressure is very low because I just really ill and undernourished. Because I can't eat, the illues, pain and eos disease, elimination diet.. i'm struggling to maintain 80 lbs at my 5 ft 8 height.. so its a combo of a lot of things. Anyway, tahnk you for always getting back to me and shedding light on things. I meet with a surgeon next week, but i doubt they are going to do anything or say anything different. Basically, "until your on your deathbed, then we can't do anything..." just pain control.
anyways, hope to hear from you soon :)
Posted 9/4/2009 3:20 AM (GMT 0)
I've been really lucky. I'm not ill by anybody's standards. I get a few joint pains and a minor throat irritation and occasional fatigue and brain fog, but it is all trivial by comparison to almost everyone else here. My wife was a nurse, so I get her perspective and I have had university training as a chemist. I'm just really interested in health issues and I read a lot of technical stuff, so I know the jargon and some of the connections between the body's systems.

You might want to ask about Addison's. There may be nothing to it, but it would be a lot easier to treat than what you're going through. One more thing - maybe you are sensitive to one of the four foods in your diet? Have they done allergy testing? I believe that RAST testing might be worth asking about. I can't actually imagine that they would just pick four foods from a list without testing, but sometimes I wonder what they are thinking....
Posted 9/4/2009 4:06 PM (GMT 0)
Yes, I have tested negative on the 4 I'm currently eating and my eos cells have been almost gone in the last 2-4 months, although now my doc is calling me leukomatic or neutropenic, or both...and he thinks i know need to see a hematologist?? I'm not spinning my wheels any further here with that.... but i need to address my stomache issues since i feel something is incredibly wrong and i'm stuck..
what do you think the surgeon is going to say? i really dont think he's going to say i need surgery..
anyway... thank you again for your replies!
Posted 9/5/2009 5:33 AM (GMT 0)
Neutropenia pointed me in the direction of SLE (systemic lupus erythematosus) of the GI system. It can occur in conjunction with eosinophilic colitis and the symptoms are a good match for those that you discovered at the ER. It is uncommon for both to occur together, but not unheard of (see: PubMed). For a summary of Gastrointestinal SLE, see: Singapore Medical Journal

You will see under the table of Manifestations - dysmotility with pseudo-obstruction (referred to as Chronic Intestinal Pseudo Obstruction); Pneumatosis cystoides intestinalis (the same as the pneumatosis you were diagnosed with). In the body of the paper, it refers to "multiple fluid levels on plain abdominal X-rays and the exclusion of an organic obstruction by imaging or surgical procedure".

SLE can be a drug induced condition and if so, it may be reversible.
Posted 9/7/2009 10:11 PM (GMT 0)
How do you know so much about SLE and what exact drugs do you think can cause this? I've never heard of such...

the link will not come up for some raeson. I'm also a little confused on what you meant by the multiple fluid levels showing up. What can that mean? Sorry, I'm just really confused and lost..
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