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Pseudo-obstruction


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#1 KarenL

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Posted 12 August 2008 - 04:39 AM

Well, I was in the hospital ER yet again last Thursday night. I looked like a pregnant lady and was even having "contractions" that were amazingly labor-like. I hadn't had a bowel movement in 38 hours and for me, since I have no colon at all, is unheard of. I usually "go" about 8 times a day.

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.

Karen :(

#2 Peggy

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Posted 12 August 2008 - 06:53 AM

I am so, so sorry for what you had to go through. I can't imagine being in the pain you were and then to have to fight the nursing staff for simple little things like using your port. I know in our hospital or certain nurses can draw from a port so they would probably be the same way. I'm glad you had your husband there to fight on your behalf.

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.

Warm hugs,

Peggy

#3 Margaret

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Posted 12 August 2008 - 07:15 AM

Hi Karen ,

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.
Margaret

#4 Karenlee

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Posted 12 August 2008 - 08:27 AM

Oh Karen, I'm so sorry for your pain and trauma at the ER. I can't begin to imagine what you are going thru, and I have no advice other than to follow up with your Rhumetologist and new GI. I hope it doesn't happen again. I'm glad your hubby was right there with you to help at the hospital. Sometimes we need an extra voice when no one will listen to us.
I suppose in the meantime, just be careful what you eat and try to rest.

Please keep us posted.

(((hugs)))
Karen

#5 truman

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Posted 12 August 2008 - 08:38 AM

Karen:

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.
Tru

It is what it is...........

#6 Michelle2

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Posted 12 August 2008 - 11:31 AM

Oh Karen my heart goes out to you. I can't imagine the pain you must be feeling. I sure hope things work out for the best very quickly.
Take care and stay warm,

Michelle

#7 janey

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Posted 12 August 2008 - 11:46 AM

Karen,
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!

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#8 Snowbird

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Posted 12 August 2008 - 01:37 PM

Hey Karen

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!!
Sending good wishes your way!

#9 razz

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Posted 12 August 2008 - 01:58 PM

Karen,

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!!


Still Standing,
Razz
Live well, Laugh often, Love much

#10 Joel

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Posted 12 August 2008 - 03:21 PM

Before I was diagnosed with SSc I went to an emergency room with the same symptoms. They got my bowel calmed down and it flared up again while still in the hospital. They decided that it was a bowel obstruction. The surgeon went through every inch of my bowel and found nothing wrong.

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.

#11 KarenL

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Posted 13 August 2008 - 04:25 AM

Thanks everyone for your kind thoughts and understanding. My doctor says the bacterial overgrowth would be unlikely to happen to me since I usually go 8 times a day. I don't have a colon at all, the whole thing was removed 13 years ago due to severe Ulcerative Colitis. I have a reconstruction called a J-Pouch formed from the lower end of the small intestine.

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!

Karen

#12 Peggy

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Posted 13 August 2008 - 05:56 AM

Sorry you are having a "sclero" day but I can relate. So go ahead and have one. We all need one now and then with what we have to deal with. Tomorrow will be a better day and hopefully you will feel better. I had a terrible stomach problem on Monday and spent the day in bed. I'm still not able to eat and I worry about what's happening with my insides. You sound like you have had to endure so much already you definetly are due a break. I hope you get to feeling better.

Warm hugs,

Peggy

#13 Sweet

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Posted 16 August 2008 - 02:01 PM

Oh my Karen, how horrible! My heart goes out to you! I've never had THAT problem, but I certainly have problems moving my bowels and look to be pregnant all the time. I know the uncomfortableness that comes with that and so I'm so sorry to hear what you've been through.

What did your rheumatologist suggest? Just to wait and see if it happens again?
Warm and gentle hugs,

Pamela
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International Scleroderma Network (ISN)

#14 smurfette

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Posted 16 August 2008 - 07:02 PM

Hi Karen,
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.
Smurfette

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#15 KarenL

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Posted 18 August 2008 - 09:16 AM

Thank you Sweet and Smurfette! I guess the frustration also comes from trying to be happy and carefree for my family and then feeling like I have to reassure them that I'm ok, or that I'm not on my bad days. I know, it sounds confusing. I guess it's just that I am a very happy positive person most of the time. I hardly ever think of myself as "sick" and then something happens, even something small, like a flight of stairs at a concert or I can't eat at the Chinese restaurant everyone else loves becaus eof celiac, and then I feel like everyones looking at me and thinking either, "oh poor Karen", which I HATE, or I think they are frustrated with me, which I also hate.

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..
Peace all.
KAren