On April 1st I had another procedure to assist in finding out why the symptoms in my belly have worsened over the last year. It wasn’t a routine procedure. Prior to 2013, I was having upper stomach pain that came and went. Held at a 3/4 on average and would rise to a painful 8/9 until I ended up in the Emergency Department at a hard 10 and was admitted for emergency surgery to remove my grossly diseased Gall Bladder. So that I don’t go back into all that, those posts can be found here and ending here for the most part. My stomach never did get better. I was diagnosed with Gastritis during the ERCP in 2013 after my first Gall Bladder surgery, so I knew I had the issue of inflammation around the stomach lining. Reducing fat intake didn’t seem to make a difference, but I’ve kept to low to no fat on a regular basis. My kidney’s are no longer in the greatest shape, but they are functioning. The issues that took me back to the same Gastroenterologist was bleeding, pain, and months of diarrhea, after years of constipation. My tailbone has been clicking in and out-of-place for over a year more and more frequently. Worse when getting up from a sitting position or when on the toilet. I thought it might be due to the Osteoarthritis of the Lumbar Spine diagnosis I’ve had.
I knew I could also feel something inside me when going to the bathroom. As it turns out there was and it was removed during the Colonoscopy. I was diagnosed with Diverticulosis in the recto-sigmoid colon and in the sigmoid colon with colonic spasm. The 3 mm polyp in the sigmoid colon was resected and retrieved. Internal hemorrhoids were found as well, I think many of us have those, either internal or external. Either from constipation, strain or from having babies. I haven’t received the biopsy results yet. I am not worried about that, I’m just glad to have the annoyance out of me. Severe diarrhea has complicated things to the point my legs have a hard time carrying me to the bathroom several times a day and during the night. It’s unfortunate that sometimes there hasn’t been time to get there and I’m closest to the bathroom I can be. That symptom still nags me. I’ve been relying on my Spinal Cord Stimulator even more using it to mask the discomfort around my mid section as well as my legs. Newer reports suggest fiber isn’t as beneficial as previously thought but that mesalamine might be. This September 2014 Mesalamine for Recurrent Diverticulitis Prevention: Results from Phase 3 Controlled Trials report doesn’t seem promising. Everything else is invasive at the critical point. I gained a horrible amount of weight the last 2 years with little to no change in activity or eating habits. Swelling in my face is often, gray color to my facial appearance, a look of black eyes. My stomach extends to the point of looking like there’s a hill-top on one side or so swollen I’m harvesting a human in there. It makes sense now why the area where my Gall Bladder use to be has never stopped hurting. I’ve learned to deal with it and gastritis, the only time it knocks me down some is during a flare up. What I couldn’t fully grasp was all the extra that sprung up along with it.
Sigmoid Diverticulitis- A Systematic Review
Diverticular Disease of the Colon
Over 14 years of CRPS type 2 from a mid-metatarsal separation. I’ve had several lesions removed from my liver, my kidney’s have declined, my uterus lining is inflamed, diagnosed by ultrasound and surgery, with a suggestion to have a hysterectomy. Stomach lining inflammation, and now colon inflammation confirmed. I’ve had an infection for over 2 years. My white blood cell count has been elevated above normal range. I’ve been treated for high blood pressure for a few years now with Lisinopril and recently put on Hydralazine for when it gets above 180/. Maybe a course of antibiotics will help my belly. I still have to followup. I was given 12 photos of my insides after procedure. I’ve been extremely Vitamin D deficient for years now with only 1 testing where I made it into the normal range. My blood is monitored every 4 months.
I have another report that will be ready on the 15th of the month. This one may have CRPS documented as part of the cause. It was at the feedback session. I underwent those tests awhile ago. Still have a few things to work on in regards to the sleep disorders, narcolepsy, brain, brain stem and other issues, but things are moving a long. I’ve been using an Auto Servo Ventilator for about 3 years for OSA, CSA with Cheyne Stokes. It hasn’t helped with the EDS, it has helped with breathing. It’s ability to record every breath I take, don’t take, deep breaths, short breaths and so much more is amazing.
I don’t contribute everything to CRPS, I know that it is part of what’s going on. If doctors aren’t going to consider them related and document it then how can I? I could never go to a new physician and say my insides are coming apart do to CRPS and them ask “who told you that?” and me say “I did”. I’d get laughed right out of the office or not taken seriously about what really might be true and most likely is. That’s why continued awareness, research, documentation, diagnosis’ and timelines are so important. There are many other’s who have developed similar health issues. If we help educate then eventually documentation will take place. We know there is literature to support internal organs being affected, but hardly any providers recognize it.
I’m not sure yet what the plan will be. I should know more this upcoming week. I need to verify too. My procedure photos I came home with are copies. In the copies it shows areas of white outs, white space and white dots, so on film that would look different. I need clarification. I just keep bleeding. JP drain in 2013 for internal bleeding, a hemorrhage during wait period for second surgery months later and during the surgery and again more bleeding. Hurt, hurt and hurt.
But what do we do..
.. We go on.
RSD Advisory- Where Chronic Pain & Depression Collide 
I’m worried… I am also suffering from constipation for longer years… no matter how voracious I am to fibrous foods, it still takes 3-4 days before I defecate. I think I really should go see the specialist as early as possible. Thanks for your article
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You are most welcome.
Yes, please see a specialist. You need to be safe.
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I had my gallbladder removed in 2003 because it was only functioning at 30% or less. I still have a squeezing pain where my gallbladder used to be. After my gallbladder was removed, I continued to just get sicker. My entire digestive system is diseased. I know all about constipation. I cannot go without laxatives. I can go weeks sometimes before I remember, hey I haven’t gone to the bathroom in a long time. I have gastroparesis, which causes nausea, vomiting, bloating after just a few bites of food, I feel so full after only eating a few bites, cramping, abdominal pain and when I’m not constipated, it’s diarrhea. There is no normal in that area for me. Have you ever been tested for gastroparesis? It’s slow gastric emptying. I have to have a feeding tube. I get so distended every time I attempt to eat by mouth. It’s very uncomfortable and miserable. I’ve had 13 surgeries and many other chronic illnesses and chronic pain. I’m sorry that you are having to go through all this. I wish you the best on your journey. I’ll keep you in my prayers and send you some good healing energy that was sent to me by one of my best blogger friends. I will share. He sends large amounts all the time. Take care and know that you are not alone. If you ever need to talk or just vent, I will lend an ear. I am here and I care.xxx
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Evening tlohuis,
We sound so similar. I would go weeks without going. Even taking prescribed Docusate and OTC’s nothing seemed to help. Like you, when I was finally able, diarrhea for 3-5 days and right back to constipation again. I became so desperate from the discomfort I’ve spent so much time on the toilet over the years just trying to go and I couldn’t, but it was in there just so backed up. Ugh. I drank Epson salts to help go finally. It sounds funny, but directions to use as a laxative are on the box and I gave in to trying it. I did go and quickly because I drank extra. I haven’t been tested for gastroparesis, I wish you didn’t have it and didn’t have to need a tube just to eat.. I haven’t vomited too much, but often nauseated. I pray for you also. It is interesting about your gall bladder I’ve learned from so many that they are experiencing similar issues since their removal. Most sad. Sending a hug your way…
~Twinkle
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HUGS to you, too. I’m going to have to try this Epson salts. Was it difficult to drink with all that salt? That might make me throw up. Can you tell me anything else about how to use the Epson salts? Would be greatly appreciated, as I am getting desperate and going to the ER is a waste of time because they give me all those laxatives when I’m clearly very very distended, telling them that because I’m so distended I am also unable to eat, drink, or tolerate the tube feeding. They then just turn around and send me home. They better hope I don’t have a blockage. I best try to sleep. Ha Ha…….if it just happens to work, there will be no sleeping. I have an appt. to go to in the morning so I sure hope it kicks in before I have to leave the house. HUGS and goodnight for now, my friend. Talk to you some more, soon. xx Tammy 🙂
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I’m just getting all geared up for a night of running back and forth to the bathroom. All I ate today was a chicken sandwich and I look like I swallowed a watermelon. I am soooooooooo distended and uncomfortable. Just gave in and drank a bottle of magnesium citrate. Uggh………………..I hate that stuff. It hasn’t been working lately, so I don’t know if I’ll get any relief or not. Not long ago, I was in the ER and I had already taken Milk of Magnesia earlier in the day, with no results, so the Doctor in the ER thought I should drink a bottle of Magnesium Citrate, of which I did and nothing happened, still. In comes the nurse and tells me that the doctor wants her to give me some kind of molasses enema. LOL I’ve never heard of that before, but let’s just say, she had to do 3 and it still didn’t work. I had all that in one day with no results. They could very clearly see how distended I was, just like I am tonight. That is why I don’t eat, and I say that every time this happens which is often because, although I have the feeding tube, I need to attempt to eat small amounts of food because that use it or lose it also applies to the stomach, of which mine is already paralyzed. I’m very serious this time. No more food by mouth because I cannot stand this and nothing seems to help or work anymore. I must have a blockage, maybe even just a partial blockage. It’s very frustrating. Oh, the things people take for granted! 🙂
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Hi Tammy
I don’t have the actual directions here at the moment for the Epsoms. I followed the directions on the box. Where it shares on bag or box the uses (as a soak, laxative etc)
Please don’t try it unless you talk with your doctor. I am not too familiar with Gastroparesis other than by research. I would not want you to hurt yourself or it have an adverse affect on you. I have been increasing my water intake even more. I feel like I’m going to float away. My son bought me the Bullet mixer for Christmas, I bought strawberries, bananas and other high fiber’s to mix together for a morning shake. I’m going to make a few batches to save leg time and then freeze it. So then all I have to do is thaw and drink. I’ve done all this before, but not in the form of using the Bullet to blend it all. I’m going to add a scoop of… ugh I forgot what it’s called.. it use to be only by prescription, but available over the counter for years now, the powder that helps us go.
Thinking of you
Sending a hug your way,
~Twinkle
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Hey there Twinkle, thanks so much for this information. I’m glad you thought for me to ask my doctor about it because I wouldn’t have thought to do that, but with all my lovely diseases, yes that would be a smart thing for me to do. Not too long ago, I got on this juicing kick because my mom bought me a juicer 2 years before and I figured I had better get it out and put it to use since I can’t have a lot of fresh fruits and vegetables in their original form, but I can juice them and that’s a good way for me to get my fruits and veggies in, but I have this all or nothing mentality, of which my therapist’s are all trying to get me trained to go with moderation. I was so proud of myself, I was just a juicin’ away and I went to an appt. with one of my therapist’s and was telling her all about it and when I told her how much stuff I was juicing and drinking all in one sitting, she about croaked. She asked me if I could just not use so much and I told her I would try, but I kept ending up with like 40 oz. at a time. Something like that. I then had to get this feeding tube and I don’t really need to worry about it too much, but it would probably be good for me to get some fresh or frozen produce in my body. This is just an example of what I was using and how much: 1 medium pineapple, 3 or 4 apples, 4 or 5 large carrots, 5 handfuls of frozen kale or spinach, a ton of strawberries, 1 small container of blueberries found in the produce section, and I’m pretty sure I’m forgetting something, but yeah, that’s my style of juicing. She asked me if I could just drink half now and put the rest in the refrigerator or freezer and drink that the next day or whenever. I told her, “no mam, I was reading in the manual that came with the juicing machine and it was saying that you needed to drink it right away because it starts to lose its nutritional value if you don’t drink it right away. So, by God, I stood right there at the kitchen sink and chugged it in just a few gulps and I was good to go. LOL I had to give it a rest, but I might try it again because I cannot go to the bathroom without using laxatives. Sorry, that was probably TMI, but anyway, I believe you may be talking about Miralax and did you know you can have your doctor write you a prescription for it and get it from behind the counter? It’s a much larger bottle and it only costs like 5 or 10 dollars. That stuff is expensive just buying it off the shelf. I have no clue why they still take prescriptions for it, but I’m not going to complain. I don’t think insurance covers it, but I forgot and I just got a new bottle of it…………my memory is not too good at the moment. I’ve only had 5 hours of sleep since Saturday.
I’m in the hospital on the cardiac care unit because I was having chest pain and it was radiating down my arm, well it still is, but anyway……………I am delirious and need to try to sleep. I’ll talk to you soon. Take care. Thanks for the hug, I really was needing one. Goodnight for now. 🙂
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You are most welcome.
Would not have you do or take something that could potentially be harmful.
Yes, Miralax. Thank you! I’m so sorry to hear about you being in the hospital again. It’s so hard when we try to just get through. My grandson will be here soon. I’ve been laying down nearly all day. Made a nice dinner last evening. Paced myself fairly well I thought as far as my legs go, but still ended up extra sore. Still in a belly flare. Laying off the NSAIDS, using Tylenol for the cramps.
I hope you are doing a little better now, if not, I pray you will be. Looking forward to my grandson’s smile when he gets here.
Hugs.
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Sorry, it’s been a few days since we last talked, but I ended up in the hospital from April 7th – April 10th. Monday night, I never went to sleep because I’m still having these miserable withdrawals. It was around 4:00 a.m. when I started to have chest pains. I didn’t think much about it because I’m so distended, I just figured the distension in my stomach and abdomen was just pushing every thing up into my thoracic cavity, so I went about my business. A little while later, it started to get worse, so I got up and took another baby aspirin. I already take one in the morning and one at bedtime because I have a blood clotting disorder called Factor V (five) Leiden. It puts me at a much higher risk of developing blood clots than the average Joe. Anyway, I took the baby aspirin and went back to what I was doing and then the pain started to radiate down my left arm and my arm and hand were feeling weird. Don’t know how to explain it. I decided to call Ask-a-Nurse and see what she thought about it and since I was so distended, did I really need to be concerned. She told me to hang up and call 911, like now, and to not have anyone else drive me there, and to not drive myself there. GRRRRRR…………..sigh……I hate having to call 911 and here comes the ambulance or 2, a fire truck, and however many police cars, not all, but several neighbors have to come out and rubberneck. It’s so embarrassing. They act so concerned, just to find out what happened. They don’t care any other day of the week, as to how I’m feeling. Anyway, I was put on the Cardiac Care Unit and they did all the usual heart tests and lab work. Long story, short, my heart is fine. They were then going to send me home and I told them that they could not send me home to starve to death. They knew I couldn’t eat, drink, go to the bathroom, or tolerate the tube feeding. I could not believe that they would turn someone loose my condition. They finally decided that I could stay and was moved out into the med/surg floor. I spent 2 nights there. The distension was finally down on Friday, the 10th and I was feeling much better, even though I know the distension and not going to the bathroom will always be a part of my life. I was hoping they would go that extra mile for me and figure out exactly what is causing the distension in the first place. They did give me a few things to help me go to the bathroom, of which did not work. They probably shouldn’t have sent me home until I could, at least, go to the bathroom. The main thing is that my heart is okay. I’ve just been kind of feeling the blues ever since I got home. Living life this way is not easy. What’s going to be next? I most likely have Lupus and I’m being treated for it with Plaqunil, but I’m not watched closely for all the lovely things that Lupus can do to you. When I’m in a major flare, I need to call that day, and they will let me come in and do some lab work, so hopefully, they can catch the tell tail signs of Lupus, to give me the official diagnosis. I have to go to an appointment in the morning and on the way home I need to stop at the pharmacy and pick up a prescription and I think I’ll go ahead and get the Epsom Salts, and then when I get home, I will call my GI doctor to make sure it’s safe. Is the pharmacy where I would get it? I hope you are having a “good” day, my friend. Take care and I look forward to talking to you some more. HUGS 🙂 Tammy
too lazy to proofread, so excuse any errors 🙂
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HI Tammy
Never worry about errors and typos. I’m so sorry you are going through all this. I thought Lupus could be verified by blood test. Maybe I am mistaken? I hope you are able to get followup treatment since the ED for everything going on. Have you been checked for a bowel blockage/obstruction? Some medications shouldn’t be taken with a blockage. Epsom is a form of Magnesium sulfate. Please don’t try it without speaking to your doctor. Some people have had adverse effects. It depends on their whole story. It could cause you to swell, retain water, or worse. I just don’t know with what you are going through. I would not advise it. I sure hope you feel better soon. At least get a little ease. Sometimes a little is a lot. 🙂
Sending a hug. x
~Twinkle
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