Posted 12 August 2008 - 04:39 AM
They diagnosed me with a bowel obstruction after x-rays and gave me two heavy doses of pain medication.
(an aside here, I hate going to the ER!! They don't know anything about you and to get them to listen is a nightmare. They didn't want to use my port, insisting that they COULD get an IV in me, even though millions before them have failed. I finally convinced them to use the port with hubby's male-growling help. He'd watched as 12 times they tried before when I was having a heart attack!...then they wanted to insert an NG tube even though I wasn't vomiting--I also opted to wait on that...blech)
So...after three or four hours of severe cramping and a medication induced doze, I finally passed tremendous amounts of watery stool and gas gas gas. They pronounced me fixed and the next day sent me home. They said it was probably adhesions and told me I'd need surgery, go home and call my doctor. I still can't eat much and it still hurts. I am horribly aware of movement through my gut and still distended, although not as bad. Liquid diet with some mashed potatoes.
Enter my amazing lovable joyful Rheumatologist! I had a call into his office because he's supposed to be finding me a new GI, my present one is brain dead. He called me at 9:30 last night and springs into a dialogue about something very rare, but for us scleroderma folks, a reality--pseudo-obstruction. Apparantly sometimes our guts don't know how to move food along the intestines and we get this dismotility thing. Of course with me, it isn't quite that straightforward, having had major bowel resection, it could also be adhesions pulling on the intestines causing a kink that needs to be corrected.
Sooooo, what to do? Wait and see if it happens again? Do a barium swallow which may cause the thing to happen severly again? I know you guys can't tell me, I'm just pondering aloud here.
Anyone else have this thing? Let me know. Peace to all...hope you are well and not on a search engine looking for rare problems that no one knows about...sigh. All I want to do is hide my head and sleep.
Posted 12 August 2008 - 06:53 AM
I don't have the severe problem you do but I was in bed all day yesterday with terrible stomach problems and hurt. I'm not able to eat much and when I do I get so nauseated I have to take compazine and that usually helps but now it's to the point that I don't want to even try eating. I had decided if it wasn't better today I would go in and to be honest it isn't as bad as it was yesterday. If it keeps up I'll go in and I suppose it will mean a trip to my gastro doctor, which I hate as it means traveling again. I get so sick of going from doctor to doctor. I have no choice though as my general doctor doesn't know much about sclero so sometimes it's even a waste of time to go see him.
I really hope that you are getting better and don't have to endure this again.
Posted 12 August 2008 - 07:15 AM
OUCH........That sounds horriably painful. Please keep that appt with the gastro doctor to r/o anything serious......other than giving birth to 'gas'.
I will keep you in my thoughts.
Take care, Everyone.
Posted 12 August 2008 - 08:27 AM
I suppose in the meantime, just be careful what you eat and try to rest.
Please keep us posted.
Posted 12 August 2008 - 08:38 AM
So sorry to hear you had such a time of things. Just when one thing gets under control, another takes over. Hope things calm down fast and you're back to normal this week. Must have been a terrible feeling. Get better soon.
It is what it is...........
Posted 12 August 2008 - 11:31 AM
Posted 12 August 2008 - 11:46 AM
What a nightmare Darlin'! I'm so sorry you had to go through all this and the solution is "Wait and See?" UGH! Did you rheumatologist get you a new GI. Sounds like an immediate need if you ask me. I'd keep buggin until you get a name and number, then more buggin' until you get an appointment.
We do have a small section on Intestinal Pseudo Obstruction. Apparently, it is real rather than pseudo. Maybe you'll find something in there to help out.
Please, please keep us informed on how you are doing!
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Posted 12 August 2008 - 01:37 PM
I feel for you, you poor thing!! I have IBS and ended up in the hospital for a couple of days way back when with severe pain...and no doubt, your's was even worse.....indescribable...it hurts so much!! I sure hope you are feeling better and soon!!
Posted 12 August 2008 - 01:58 PM
My heart goes out to you. Stomach pain is the worst thing to deal with because you're never sure what it is. I hope you get a good G.I. specialist who can get to the root of the problem ASAP. Your husband is an angel to stand by your side and make sure you get the proper treatment. I'm so glad you have someone who looks out for you!
Get better soon!!
Posted 12 August 2008 - 03:21 PM
After getting out of the hospital I continued with the same symptoms and they finally diagnosed me with a bacterial overgrowth in the small bowel. This is common in SSc patients, since their bowels have slowed down due to harding from the disease. Anyway, Antibiotics like augmentin, cipro, flagyl seem to keep me on an even keel. Reglan can help push food through faster.
Posted 13 August 2008 - 04:25 AM
My rheumatologist thinks it was a pure pseudo-obstruction, which he describes as a sort of 'charlie horse' in the gut. The small intestine opens and closes to push food along. In scleroderma, for some unknown reason (GRRRR again with the 'unknown reason!) the guy closes and fails to re-open causing a build up of gas, digested food and bile to build up behind it. Since I responded relatively quickly to pain medication, he thinks that was the cause.
I'm so tired of scleroderma. It seems like none of our body systems are free from fear of attack. One thing gets better another starts up. I have just gotten my finger under control, (it started to turn black last winter) the nail is dead and ready to fall off, and already the weather is getting cooler at night and another winter is impending.
I know the saying "I may have scleroderma, but Scleroderma doesn't have me" but today, it feels like a burden. Sorry to be negative I know positive thoughts will help. I'll be better soon, I'll be back to my happy self. Just another set-back.
Peace, and thank you for being there!
Posted 13 August 2008 - 05:56 AM
Posted 16 August 2008 - 02:01 PM
What did your rheumatologist suggest? Just to wait and see if it happens again?
Posted 16 August 2008 - 07:02 PM
It sounds like you were in terrible excruciating pain and had to fight with the nursing staff at the same time. You were in an absolutely impossible situation. It is so fortunate that your husband was there to help get your needs met. The fact that you could not get the help you needed the way you needed it only added stress to your already painful situation. I fully understand that you hate scler. You have every reason to hate it. You are not having an easy time.
Some days none of us have the fight in us. We need to take a deep breath and try to regroup and gather our strength, both emotionally and physically. This disease wages a war of attrition and sometimes I know that I have to pull in my horns a bit and refocus. But not until I am out of pain. When I am suffering with an extremely powerful bout of pain I need to direct my attention to getting to a doctor to help me find the genesis of the pain and work on getting rid of as much of it as I can. After the immediate crisis of the extreme pain is managed then I can deal with getting my spirit back. In your case you also need to get in touch with a new rheumatologist who can help solve the mystery of why you had such an awful episode so it does not happen again. No wonder you are frustrated - you have such a nightmare of an attack of pain and you have no answers as to why it happened and how to prevent it.
I hope that you are feeling better and that things are under control. I hope that you find a doctor that you feel comfortable working with soon. Take care and go easy on yourself. Your body has had a shocking and painful time of it and needs time to heal. We all have our days - we all share your hatred of this ugly disease. We also are here for you to vent any time you need it. Feel better - I hope you recover quickly.
Chocolate, It isn't just for breakfast anymore!
Posted 18 August 2008 - 09:16 AM
I am very very lucky my hubby is awesome, but he gets tired too. Then he feels bad if he feels sick or tired or something, because he says "well, it's nothing like what you go through". I don't want to be a sick person! Anyway, thanks for listening...I don't know what I'd do if there wasn't this site..