Severe cramping

Wow. You have had a lot to deal with. So sorry. Have you gone to a gi Dr. Had any gi testing?barium swallow? Ph impedance testing? Motility testing? If I was in your position even though you don’t want to do to Dr. I would 100 percent go see a gi Dr! Give you peace of mind as well as a diagnosis. 😊

Also a ct scan? Or Cta scan? They sound necessary. At this point.

graceym1,
Yes, I have had all the tests you mentioned. I was with the same GI for 17 years: celiac biopsy, CIC, chronic idiopathic constipation, fecal impactions, small bowel partial obstructions, 2 resolved by me quit eating solids, using meal replacement protein shakes (my daughter is very knowledgeable about which is best for me, or I never would have used them). The 3rd one landed me in ER, ICU, gastric nasal tube for 3 days. Then 3 anal blockages that required digital removal, by me. So, I still don't eat a lot of solid foods, and I have to take miralax every day.
I don't ever believe that a Dr. can give me peace of mind. Just the thought of it makes me break down sobbing or LOL. I have had CT's, MRI's, biopsies, x-rays every 1-2 months, always showing I have heavy fecal load in large intestines, I guess that means I am quite literally full of 💩💩. Thanx, for your suggestions. Shelley

You have certainly been through alot. I’m sorry. I’m glad you have a knowledgeable daughter that helps you! Have you been to nyu or Columbia Presbyterian in nyc? Or Mayo Clinic? UVA? What are drs saying you have exactly? And why can’t they fix it?

graceym1,
My parathyroid glands are over worked and under paid, 😱, I have slightly elevated calcium, has been trending up for 5+- years. I had secondary HPTH diagnosed in 2008, due to malabsorption... I have severely damaged villi in my intestines due to lifelong celiac disease, I didn't know it, because I am have been asymptomatic or have the opposite symptoms. This is also a surgery like yours... I could wait, and continue with a declining QoL, or get it done. My body systems are overwhelmed, with several problems, it has no fight left, so every time I turn around I get a different, more weird and serious diagnosis. I, like the other's will want to know what your decision is. Good luck. ShelleyW

In my experience Miralax gives me a lot of gas and cramping, I switched to colace

Are you constipated even with daily Miralax? The dose can be adjusted upward quite a bit to get the right amount. I have been taking Miralax mixed with Metamucil in a 3/4:1/4 ratio. The metamucil adds some bulk to the stool helping it move along. I use generics for both. I wonder if you have a redundant (extra long and loopy). That makes too much water be absorbed from the stool resulting in consipation. Sometimes surgery to remove some colon is advised. I assume you are on a celiac diet? I have a similar problem with CC and it’s miserable. So sorry you’re dealing with this! I have times where I get so blocked up i take 8 caps of miralax over 2-3 hrs and that clears it. It’s like doing a colonoscopy prep mini style.

slkanowitz,
YEP!! I have been using miralax mega doses for 15+ yrs. I recently changed to Metamucil gummies, they don't cause near the bloating and gas I get with the powder form. I just found out that I have a redundant splenic flexure, since 99% this congenital. My frustration has turned to anger since I have had this for 65 yrs...my doctor still didn't tell me about this, 1 radiologist noted it on a CT scan. I have not read that the redundant makes too much water, would you please explain this further?
Yes, 95% GF. I actually don't eat a lot of solids I just so fearful of another small bowel partial obstruction (had 3, 2 cleared up by eating barely any food, I used, and still have meal replacement shakes) 1 got me an ambulance ride and ER to ICU 4 days in the hospital and that awful nasal gastric tube. I have had 4 blockages just inside the anus, that required digital removal, by me, OMG, this is hell!!!! I just had parathyroid surgery, it can cause CIC, hopefully it will get better soon. I also use magnesium oxide daily for a bit of help with the CIC and Hypersomnia.
What do you typically use daily?
ShelleyW

Shelley, I’m so sorry no one told you about the redundant colon for so many years. It is quite common and there is like you mentioned a hereditary component. I have a redundant colon as well and suffer from chronic constipation. I take a mixture of Metamucil 1/4 to MiraLAX three-quarter combination. It seems to work best for me. Because the colon is extra long more water is absorbed from the stool, which is the main purpose of the large intestine. So the stool gets harder and more difficult to pass. In severe cases of redundant colon, surgery can be done to remove part of the colon especially where the loops are . You have had terrible problems with this, and I certainly understand your anger and frustration that you were not given this information earlier when you could’ve been more proactive at preventing some of the problems you’ve had. I am a strong proponent of everyone reading their own imaging reports and lab reports , because these important bits of information slip through the cracks and go unnoticed all the time, putting patients at risk. The Metamucil adds bulk to the stool which helps it move through the G.I. tract whereas the MiraLAX adds water to the stool, so it counteracts the excessive water absorption by the long colon. I hope you are able to get this resolved and prevent further obstructions. I was hospitalized once at the Mayo Clinic for an impaction that made me terribly ill, and it was resolved by doing a colonoscopy prep routine with MiraLAX. Chronic constipation predisposes to diverticulosis and diverticulitis so keeping the bowel moving is crucial for prevention of those complications.

slkanowitz,
You should be a guest lecturer at a GI conference and teach the 👿💩🤬💩👿idiots that think they know our bodies better than we do. You should charge them $$$$$ to relearn what they should already know from med school.
Oh!! Part of your program would be that they MUST be 💩💩💩for a full week prior to your lecture... not even 1 of these doctors could handle it. ShelleyW