I went to the doctor today for my recheck after upperscope. He said that I have severe gastroparesis and IBS with constipation. I am a little confused about this. He told me to relax and eat soft foods low in carbodrates, and write down what I eat in a diary. I can't eat anything I told him. Even cream of wheat or rice bothers me if I eat more than a couple of bites at a time. He didn't have much to say about that. I am down to 119lbs ( never been so thin). Also I haven't gone to the bathroom in 6 days. Sometimes its 14 days before I go to the bathroom. Told him, really no responce. Oh, and he said that he could refer me to the Mayo clinic or Iowa City University Hospital, but they would do a couple more intense test with the same results. I don't know what to do, I just know if I don't do something I will die from this.
Please help
Jen
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Went to doctor today
- By Juliettesue77
- Posted September 14, 2009 at 1:08 pm · 10 replies
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- By katbrow
- Posted September 15, 2009 at 8:27 am
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Jen:
It sounds like you need to move on to another doctor of facility. He has no answers for you and should be referred to someone else with more knowledge in the field. I was wondering if you have bezoar like I had but you had an EGD done, I guess that is what you mean by an upper, not just a barium swallow. Did they say your stomach was full of food? When I had the bezoar I could not eat but a bite or two and would get sick. I drank 5 root beers a day and just very small amounts of soft food for a week and was able to dissolve mine. That is a miserable feeling.
I hope you get the help you need soon. Will be praying for you.
Kat
- By prayer
- Posted September 15, 2009 at 10:27 am
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Juliette, I am so sorry you have this problem. Did your doctor recommend anything to get your bowels moving? As you look at this site, many people take, Miralax, domperidone, reglan, prune juice, etc etc. YOU WILL NOT DIE. It doesn't sound like your doctor did much listening to you. I don't like to knock doctors but if your rapore with him is not good then perhaps get a second opinion. Frm what you describe it sounds like you are very constipated. Remember I am no doctor but there are things you can do to get relief.
- By gpgirl5
- Posted September 15, 2009 at 3:01 pm
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I also think that you probably need a new doctor. This one isn't very helpful at all. You can call g-pact (gastroparesis patient association for cures and treatments) and they should help you find a doctor. 1-888-URG-PACT.
Here is also a good list of Motility Specialists:
http://www.digestivedistress.com/main/page.php?page_id=116
- By Juliettesue77
- Posted September 15, 2009 at 6:54 pm
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Thanks guys. I am really worried about nutritional value. I went a little this morning. The doctor has me on amitiza & miralax. Most of the time my stool is soft it just takes a week to get through my bowels. He tryed to say I had severe gastroparesis & IBS with constipation, but I think that he might not be right. Had an upper scope (endo) everything was normal. Stomach was empty, but I'm sure my bowel was full.
Thanks guys for all the help, I m going to try to get a referral to Iowa City University.
Thanks again
Jen
- By GPAllie
- Posted September 15, 2009 at 8:06 pm
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My first GI misdiagnosed me. I still don't know why I'm having so much pain. It's imperative to get another opinion (and exhausting!).
I couldn't stand the miralax. I now take a supplement called Peter Gilham's CALM. It's magnesium powder, it disolves in hot water. You can get it a vitacost.com or on Amazon (and I think compared to Miralax, CALM is less expensive). I find it effective. Also, it doesn't bother me like Miralax did. Miralax makes me feel like my body's water is all being brought into my colon. CALM works similarly, since magnesium works as an osmotic, but I just don't feel as wrong when I use it as compared to Miralax. Some of us also use 8oz of prune juice as a stimulant.
It sounds to me that you need something to move your colon. Miralax will fill the colon with liquid but you're not going to get the colon to contract with it.
Feel better, Allie
- By lizardgirl
- Posted September 16, 2009 at 11:35 am
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Dear Jen,
I have been getting my care at the Center for Digestive Diseases at the U of Iowa Hospitals and Clinics since 1998. I would recommend Drs. Gerke and El Abiad who have put in all my tubes. I have been followed by a physician's assistant who missed my motility diagnosis for several months (during which my life was absolute hell). This person has been wonderful otherwise. I am seeing Dr. El Abiad now, who just finished his fellowship there. He is the nicest doctor I've ever met and has people call him by his first name, Rami. He always says to me, "I'm only a phone call away." His nurse is Diane. He gives me a big hug at the beginning and ending of each appointment. Every time I had a crisis with my various tubes, he and Dr. Gerke always saw me the same day. They believed and respected me. They came to know when I called for help, I was having a very serious problem.
I would not recommend all the doctors there, however. If you would like further information let me know.
Eileen
- By lizardgirl
- Posted September 16, 2009 at 11:43 am
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Dear Jen,
I had another thought. I think there's a doctor at UIHC who is familiar with giving botox injections for GP. I don't think any of the doctors have put in gastric pacemakers. If you're thinking of coming to UIHC, I'd check these things out first. I don't want you to be disappointed and not get the care you need and deserve. I wish you much luck and I want you to know you'll be in my thoughts.
Eileen
- By Einstein
- Posted September 16, 2009 at 1:01 pm
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Eileen,
About how long does it take to get into see one of the doctors you mentioned. Are they very symptom/ control treatment oriented or very do lots of tests not try and give relief? I would like any other information you have.
Thanks!
Einstein
- By lizardgirl
- Posted September 16, 2009 at 6:13 pm
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The GI clinic is pretty busy and it can take several weeks to months to get in. There can also be a wait getting tests done. As a patient you're competing with a lot of Iowans to get tertiary health care.
I think overall the doctors are more test-oriented. However, I felt that Dr. El Abiad wanted to make sure my problem was being treated as well. My two doctors got involved when I needed an emergency PEG-PEJ placement. Until that point I was under the care of the PA. These two doctors then did my separate j tube and g tube when the PEG-J stopped working. Dr. El Abiad has put in the MIC-KEYs. I think I was referred to them because they were available that particular day I was in the clinic with my emergent problem.
I think you'd get seen sooner if you try Dr. El Abiad, since he has just joined the faculty and is getting his own patient pool. I got to see him 2 weeks from the time I made the appointment. If you want a doc with more experience then try another doc. Maybe things go faster if your doctor makes contact with the GI docs directly. My family medicine doc referred me to them several times. I have malabsorption disorders and I had colon cancer, so I've been to that clinic a lot over the past 11 years. In this time I got care from two good docs who later left UIHC and the aforementioned PA, so there are a lot of doctors that are unfamiliar to me. I wish I could be more help, Einstein. If you think of any other questions let me know. I'll keep checking this discussion.
Eileen
- By prayer
- Posted September 17, 2009 at 11:50 am
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Just hoping that you get better and better
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