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chronic pseduo intestinal obstruction

Juliettesue77
0 Recommendations

I am in the process of going to a new doctor. (Actually the University of Iowa). When I eat anything solid I won't go to the bathroom for 5-10 days, ( stool). If I drink protein shakes and pureed food I go but get real bad cramps , nausea, and then followed by diaherrah. So it doesn't matter what I eat I'm sick. Does anyone out there have Chronic Pseduo Obstruction? I am wondering if I am not paralyzed from my throat all the way down to my bowels. I am having problems swallowing foods and medicines now. Hopefully the doctors will call this week with an appointment date. Does anyone else have these problems? I am even on constipation medicine which is not helping ( amitiza). Miralax works but it still takes days for the food to get out of my bowel.
Any advise on these would be great.

Thanks

Jen

Explore topics in this discussion:

MiraLax Surgery Gastroparesis Zelnorm Anxiety Constipation Intestinal obstruction Pain Pacemaker Fibromyalgia Mental health Colonic inertia Depression Diarrhea

21 replies

Juliettesue77

Plus , I would like to add the doctors that I have been with look at me like I am crazy and I just want to find a doctor that believes what I am saying.


Is there a test that tells you how much function you have in your bowels and stomach? Does anyone know? I asked my last doctor and he laughed at me.

Jen

msc

This all sounds familiar to me.
Your not crazy!
Your upcoming appointment at U of I should yield what testing can be done to further define the transit problem.
What GI specialist are you seeing?

Bruc

Juliettesue77

Not sure yet. Still waiting for the call. If they don't call tomorrow I am going to call them. (or my old doctors office). Are you from this area? I have seen 3 or 4 doctors now and they all look at me like I'm crazy. My last doctor said it was my nerves and to just calm down and eat. What a joke.

Jen

msc

Im in Illinois.
Been dealing with this for 15 years.
You have to be proactive and most of all educate yourself. Considering going to U of I.
They have an excellent motility specialist named
Dr. Satish Rao.

Keep me updated as to who your assigned to, what they do and there conclusions.

Good luck.

dalalf

I have Chronic Pseudo Obstruction for short CIP and you can read a lot about it on the AGMD website and Mary-Angela the founder wrote several articles about it. It took me 30 years to find out seeing the best doctors between USA and UK. A good GI would do several tests first starting with a manometry test and then several others including a biopsy to decide if it's the muscles or the nerves of your digestive system. Me too somtimes food or medicines get stuck in my throat. For many years doctors tried to make me believe its psychological asking silly questions about my relationship with my husband and family while I was in severe pain. I wish you would find the right GI and best of luck.

GGCPTEACH

Amazing that so many people have their doctors suggest that it is their mental health that may be causing this condition. I had a conversation with my mom's doctor at her last visit. She has a history of depression and anxiety so he suggested that her psychiatrist needed to get her anxiety under control. I brought to his attention that basically it is like a cat chasing its tail. The more her GI symptoms are out of control, the more anxious she feels. Which I understand negatively affects her GP. I pointed out that one directly affects the other and since he was the GI doctor, he might want to get her symptoms under better control so that she isn't so sick all the time. Then her anxiety might improve which would in the end help her mental health and her GI.
I think because this disorder has no easy cure, it is difficult for the doctors to say that they are unsure how to help. I would rather doctors be honest and say that this is a tricky disorder to treat and that we will have to try many different things before we find the right combination. It is frustrating, but better than leaving their patients with the impression that it is all in their heads.
Hope things improve for you soon.

msc

Any word from them yet?

Juliettesue77

I got an appointment an the University of Iowa in November. I am going to see Dr. Schultz. Hopefully he can help.


Jen

msc

Good luck.
Going to my primary couple of weeks.
See if he will give me a referral there too.
3 hour drive for me.
Did they give you any idea of what to expect on the first visit?

Sidani

Hi Jen,

I'm so sorry you're in this situation, too. I have GP and Neuropathic Pseudo Obstruction which causes chronic nausea, vomiting and constipation. Mine came on me immediately following my second back surgery when they had to go in from the front and move all of my organs out of the way. That was July '06.

Anyway! Here's a list of the tests they've given me in San Francisco to discover my true problems.

1st - "Colon Transit Study with SITZ Markers" - You swallow a capsule that has dozens of teeny markers in it and you go back every day for an x-ray to see how they are progressing through your colon. Using this, they discovered a section of my intestines where the markers actually moved backwards for a time. They let me do this test locally so I didn't have to drive 3 hours each way to get the x-ray.

Delayed Stomach Emptying Test - 4 hr w/x-ray every 45 minutes, Upper GI Endoscopy, Colonoscopy, Anorectal Manometry, Pudendal Nerve Latency Test, Electrogastrogram, CT Abdominal WO/W Contrast.

They did one more test that I can't find the paperwork for that lasted 8 hours with me lying there with a tube in my mouth going all the way down through the pyloric sphincter into my small bowel to measure it's contractions.

Medications prescribed for me: Octreotide Injections daily and Zelnorm (compassionate use since it was taken off the market and is only available for women under 55.)

I hope this list will help a bit. Maybe you can write down some of it and take it in with you. If you go in there armed with knowledge, it may actually help them find your problem sooner. I wish you all the best. I wouldn't wish this condition on my worst enemy.

I will give you my doctor's info to take with you if you like, in case your doctor has any questions.

California Pacific Medical Center
William Snape, M.D.
Medical Director
CPMC Center for Neurogastroenterology & Motility
415-600-1138
415-600-1122 - Fax
snapew@sutterhealth.org

Wishing you all the best. This is a long and rocky road, but if we each extend a hand to someone in need, we can get through it. {{{hugs}}}

~Shirl Ann

Juliettesue77

just a 15 minute consult. Then we will go from there

Delila

Hi, i wanted to tell you that what you have is EXACTLY what my colon Dr told me i had, i can't believe it, i thought i was the only one in the world that had that dianostic. After suffering for years and years of not being able to have BM, and pain and stomach swollen like i was 9 months PG, i finally had to have my colon removed, just 2 1/2 months ago. I lived in such pain in my stomach and tried EVERY medicine the Dr could think of. I really feel for you. I know exactly how you feel. I have fibromyalgia on top of that, so i am always in pain and never have any energy. You might as well get prepared to have your colon removed. I was scared to death, but had to do it. It has helped, my stomach pain is just alittle, and it's so great to have a BM. I do not have to ware that bag, either. If you have any questions, i am happy to help you. Good luck!

Debbie

suzieb

Hi Shirl ann, I have been reading the discussion posts concerning CIP, GP, etc... You mentioned using the octreatide injections to aid motility. In 1992 I had a 24 hour small bowel motility study which entailed swallowing wires that the tech then using a magnetic device moves the wires and attaches them to each of the areas of bowel to study contractions, MMCs. They injected the octreatide at certain intervals and measured the effect it had on the motility. Anyway, long story short, I continued the octreatide injections for a few weeks after discharge, however I found it really effected the antral activity. My vomiting was worse.
I had my studies done at Shands, Univ of Florida.
I also tried zelnorm, with no improvement. The motility study was like an EEG of the small bowel. They found that the contractions were either too few, not strong enough or there were none. That study was done a long time ago, but I have been chronic for so long. Did you have the same test as I did? I have never known anyone who has. That's what I appreciate about our online community. Take Care one and all. Sara

msc

There is definitely a semantics problem when a patient presents with functional constipation and a subsequent diagnosis is made.

Is the diagnosis functional constipation, colonic inertia or CIP chronic pseudo intestinal obstruction

Functional constipation can be subdivided into:
1. Normal Transit
2. Outlet Obstruction
3. Slow Transit Constipation
http://www.wjgnet.com/1007-9327/12/4609.pdf

Colonic Inertia
http://www.wjgnet.com/1007-9327/10/2465.pdf

CIP
http://74.125.95.132/search?q=cache:AygVgOGIQ4MJ:emedicine.medscape.com/art icle/179937-overview+anorectal+motility+disorders&cd=9&hl=en&ct=clnk&gl=us& client=firefox-a

Based on literature search and reading case reports, some CIP could be classified as slow transit. The author is very specific on a CIP diagnosis:
"the criteria for diagnosis should include definite symptoms and signs of obstruction, with documentation of an ileus or air-fluid levels on plain radiographs of the abdomen or a dilated duodenum, small intestine, or colon on barium radiographs".

The terminology is definitely confusing but these articles should clear up things to a degree.

Beware.
Simply removing the colon does not necessarily equate to symptomatic relief. As the first article on STC stated, the abnormalities can be systemic involving the esophagus, stomach, small bowel, and gallbladder. If systemic disease is present then very
careful consideration should be given to the risk/reward ratio of removing the colon.
http://www.ncbi.nlm.nih.gov/pubmed/14719156?ordinalpos=157&itool=EntrezSyst em2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVD ocSum

Another interesting finding is the high frequency of these diseases in women when compared to men often attributed to some type of trauma.
Im in the minority.

GI_dysmotility

Hi Shirl Ann,

Why are you on Octreotide? It's an anti-diarrheal med.

"Octreotide (ok-TREE-oh-tide) is used to treat the severe diarrhea and other symptoms that occur with certain intestinal tumors. It does not cure the tumor but it helps the patient live a more normal life."

Becky

Sidani

Wow, I don't know, Becky. I mean, I didn't know it was an anit-diarrhea medicine. I have to go back to SanFran on Tuesday to see my doctor, I will ask. I wish they'd take me off of it but they think it is helping my intestinal motility issues. I will certainly be asking!

msc had it right, my test was a small bowel manometry test lasting 8 hours.

Sara, maybe the small bowel manometry test is the current test they run like the one you had so long ago. I know it measures contractions.

Sidani

Wow, I don't know, Becky. I mean, I didn't know it was an anit-diarrhea medicine. I have to go back to SanFran on Tuesday to see my doctor, I will ask. I wish they'd take me off of it but they think it is helping my intestinal motility issues. I will certainly be asking!

msc had it right, my test was a small bowel manometry test lasting 8 hours.

Sara, maybe the small bowel manometry test is the current test they run like the one you had so long ago. I know it measures contractions.

Sidani

I spoke with my doctor about the octreotide and she said that although it is an anti-diarrhea medication, it is also a stimulator in the intestinal tract. Since I have nerve damage in my intestinal tract, I don't know if I will ever come off of octreotide. It does seem to be working. It's either that or the beer. lol

I go tomorrow (if I'm able) to my last test before they decide if they're going to implant the pacemaker on my stomach. If I'm still going to have nausea afterward, I'm not really clear on the advantage except to reduce the vomiting.

Sidani

Well, I got great news, no pacemaker. I have improved 10% over last year's gastric emptying test results. The pseudo obstruction will always be a problem for me as it's severed nerves, but the gastroparesis just may get gradually better as time goes on. I pray that it will continue to get better... wish it was faster, though.

I just wanted to share that here since I mentioned it in my last post.

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gimotility: RE: 2009 AGMD Digest.Motility Symp. "Hirschsprung's dis., most common cause of lower intest. obstruct. in neonates," Rodriguez MD.

gimotility: RE: 2009 AGMD Digest. Motility Symp."IBS accounts for 30% of all health related costs in gastroenterology" www.agmd-gimotility.org

gimotility: From 2009 AGMD Motility Symp.: "IBS is the most common chronic med. cond. worldwide" Pimentel, MD, http://www.agmd-gimotility.org

gimotility: AGMD Digestive Motility Symposium-Much Information & Insight. Stay Tuned For Highlights. AGMD: http://www.agmd-gimotility.org

gimotility: Hurry And Register For Extraordinary Symposium Featuring Renowned Experts In Digestive Motility. http://www.agmd-gimotility.org

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