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Crohn's Disease Forum » Support Forum » Undiagnosed Club » So angry and depressed


09-19-2011, 12:01 PM   #1
wantanswers
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So angry and depressed

Hi everyone! I am new and honestly have never even been a part of a forum before. I decided to share my story in hopes of moving past my anger and depression. No one in my family seems to understand and it is just so difficult to explain to someone that has never experienced this type of pain. I will try and keep my story brief.

I am a 39 year old mother of two and grandmother of one. In 1997 I began having a dull ache in my upper left quadrant. I ignored it, thinking it was no big deal. Within a few months I could not eat without having horrific pain. After a visit to my PCP and an ultrasound I had emergency surgery. My spleen weighed 9 lbs. That was in November of 1997. The doctors could not explain what happened to my spleen. I had not had any type of infection nor was there any trauma that could have caused such a large spleen. Tissue samples were sent away and thankfully came back benign. No other explanation was given. Within a year of the splenectomy I began having episodes of pain in my upper to mid right quadrant. I never had diarrhea but did develop constipation. These episodes would last anywhere from a few days to a few months. Some were more severe than others. During the severe attacks I would make a visit to my PCP (a couple occasions I ended up in the ER) and they would run some blood tests. A few times they did perform an ultrasound. All test results came back fine but I lost 15 lbs. My PCP convinced my that there was nothing wrong and I basically gave up. I lived with these attacks for years until they increasingly became worse. About 3 years ago I ended up back in the ER. Same thing blood work, ultrasound looked fine. They did perform x-rays and said that I may have a small kidney stone. I ended up back at home with pain medication. I missed an entire week of work because I was so sick. I had no appetite because of the pain therefore I wasn't eating. After about a week the pain became bearable (without pain meds) and I returned to work and continued living with the attacks. I have to add that I have a very high pain tolerance or so I have been told. I had both of my children natural and lived with horrific pain of my enlarged spleen among other painful injuries. I hate taking pain medication so I have to be in complete pain and agony before I will take anything.

Ok to speed things up a bit....the stress in my life as multiplied by 100 in the last 18 months for many reasons. The attacked seemed to get more frequent and intense until I could no longer function. In March of this year I ended up in the ER again with severe pain on my right side and vomiting. After a CT scan I was admitted to the hospital with a rather large kidney stone. After 3 days in the hospital I passed the stone and was released (this was on a Monday) but before I was released I explained that the pain that I had been experiencing for the last 14 or so years was still there. The hospitalist that was in charge of my hospital care ordered a HIDA Scan for the next day thinking that maybe my gallbladder was bad. Needless to say I had surgery that Friday to have my gallbladder removed. According to the surgeon my gallbladder had been inflamed to the point that it basically killed all of the tissue. But no explanation as to why something like this may happen. The doctors said after a month or so you will feel like a new person. No more pain, constipation or vomiting. I was so excited! After 2 months of severe diarrhea, pain, nausea and vomiting I was back to square one. Right side pain, constipation, vomiting and nausea. By this time I had lost 10lbs and found a new PCP. I should also explain that they kidney stone caused my right kidney to become inflamed just adding to the agony. In May I had several visits to my PCP and now I was also seeing a Urologist. Ultrasounds were done along with blood work to check the condition of my kidneys. Everything came back fine. I need to add that during this time the doctors thought it was all kidney related and I was put on Toradol. While on Toradol my symptoms began to improve but I was told that Toradol can be very harmful so I was not allowed to take it for long. By the end of May the Urologist said that everything seemed fine kidney wise and there was nothing more for him to do. From all of my ER visits as well as my PCP and urologist I had an ample supply of pain medication that helped take the edge off so I could function to an extent. On June 6 after work I drove myself to the ER because the pain was unbearable. I was admitted with another large kidney stone and transferred to a bigger hospital for stone removal surgery. Surgery went fine. Went home on June 9 with a kidney stent. I thought I was dying! The pain was so bad. I removed the stent on June 11 hoping to get some relief (it was the kind with a string hanging). No relief and no explanation as to why my body was developing these stones. Oh and I forgot I had also passed another stone at home in between the first stone and the stone that required surgery. I was told however that due to the trauma from the first 2 stones that I will now require stone removal surgery EVERY time I get a stone. The pain, constipation, nausea and vomiting continued until I ended up back in the ER on July 30. Same tests were ran same results. Everything is fine. At that time my PCP decided that maybe I needed to see a G.I. doctor. I was missing work, I could hardly get out of bed. The pain medication didn't seem to be do anything anymore. There were many times that I was in tears due to the extent of the pain and frustration. My first G.I. appointment was on August 31. He mentioned Crohn's and Sphincter of Oddi Dysfunction but leaned more towards Crohn's because I have the skin rashes, kidney stones, mouth and nose sores as well as the pain in the upper right side. He put me on Levbid to see if it made any difference. On September 7 I had a colonoscopy and endoscopy. I have a small hiatal hernia and a few diverticula but everything else looked fine. Of course before the procedure I was on an all liquid diet for 48 hours as well as the cleanse (Moviprep). For about 4 or 5 days I felt fairly well. I did develop diarrhea and have been going back and forth between that and constipation ever since. The pain began to return and has increasingly gotten worse to where it is verging on unbearable again. I go tomorrow for a CT enteroclysis and I am hoping and praying for some kind of answers. My PCP said that he does not think that it is Crohn's but evidently by G.I. doctor does because he ordered the CT enteroclysis. Does any of this sound familiar to anyone? The Levbid does not seem to be helping. I also take Dexilant for the heartburn and constant burping and that seems to help.

Sorry for such a long post but I am desperate for answers!!!
09-19-2011, 12:18 PM   #2
Cat-a-Tonic
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Hi Want, welcome to the club and the forum. I'm sorry that you've been suffering so much and for so long! Your symptoms certainly sound like they could be an IBD (Crohn's or colitis). Levbid is an anti-spasmodic medication that generally works better on conditions like IBS rather than illnesses like IBD. If you have any abdominal cramping, it sometimes helps with that, but it unfortunately probably won't do anything for any of your other sypmtoms. I was on Hyoscyamine, which is the generic of Levbid, for a short time but it gave me horrible nausea and vomiting so I stopped. (Apparently mine was a rare reaction, most people don't get worse nausea/vomiting in response to Hyoscyamine.)

It sounds like what your GI is doing is fairly typical. Most GIs will start with colonoscopy and upper endoscopy. Those tests are good because they can take biopsies (I'm assuming your GI took biopsies - if so, did you get the results of those back yet?). However, the scopes can't see the vast majority of the small intestine, and Crohn's in particular can manifest anywhere from mouth to anus, and usually does show up in the small intestine. The CT scan will look at what's going on in your entire digestive tract, so if there's any thickening or narrowing of your intestinal walls, it should pick up on that. If it doesn't find anything, there are other tests to try. Ask your doctor about small bowel follow-thru, MRI-enterography (MRIs get much better images than CT scans do), pill cam/capsule endoscopy (where you swallow a small pill-sized camera that takes pictures of your entire digestive tract).

I really hope the CT can get you some answers so that you can get some relief. Please keep us posted! Hang in there. And again, welcome!
09-25-2011, 09:50 AM   #3
littlemissh
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I was originally thought to have a dystonic gallbladder or sphincter of oddi dysfunction after an abnormal HIDA scan and then abnormal gall bladder emptying uss. The only way to diagnose SOD is to do sphincter of oddi manometry which is via ERCP but it is not without risk. Some surgeons inject botox into the sphincter at the time to se if your symptoms are relieved.
I had my gall bladder out and had temporary symptom relief (they think now as I was on liquid only diet for 6 weeks pre op which gave my small bowel a break).
SOD is not cured by cholecystectomy, and can occur with no gallbladder, you need a sphincterotomy to resolve it. It turns out it was crohn's in my case unfortunately.
__________________
Diagnosed Crohns small bowel 2010,Gastroduodenal crohn's Jan 2012. Gastroparesis june 2014.
Duodenal perforation/peritonitis nov 2011. Portacath placed Nov 2013. Gastric pacemaker 2015.
Perforated jejenum/peritonitis oct 2015, PEJ for enteral feeding nov 2015

On Humira every 7 days, intermittent iv iron, regular blood transfusions :faint:
On TPN since March 2016.
09-26-2011, 08:37 AM   #4
wantanswers
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Cat - Thanks for the wonderful welcome! Yes, I did have biopsies which came back fine. The CT enteroclysis results are back and the only thing that it showed was fluid around my left kidney. I do have to say that the CT enteroclysis was done without sedation and it was horrible. If anyone is going to have this procedure I strongly recommend sedation. My next appointment is today to with my PCP to find out what we need to do about the fluid around my kidney.

littlemissh - later on this week I will be scheduling an MRCP with my G.I. doctor. I am not familiar with this procedure so I plan on talking to him before I commit. I have to admit the CT enteroclysis took me by surprise and I do not want anything like that to happen again.

Thanks for all of your advice and for sharing your experiences.
09-26-2011, 09:26 AM   #5
littlemissh
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MRCP is an easy test. Just an mri with contrast. Nil by mouth for a short period. No ng tubes or nasty surprises.
09-26-2011, 12:01 PM   #6
Cat-a-Tonic
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I concur with Little Miss H, MRI was one of the easier tests I've had to do. I had an MRI of my liver though, so you may get different contrast than I did (I only had injected contrast, not oral). I haven't yet had an MRI of my digestive tract (long story, I am still undiagnosed, but my GI tried me out on several medications which put my mystery illness more or less into remission - so now is not the ideal time for me to do more tests, I pretty much have to wait until I have another flare-up). Anyway, wishing you the best of luck with it, I hope it goes easier for you than the CT did, and I hope it gets you some answers so that you can get some relief! Good luck and please keep us posted.
09-26-2011, 02:24 PM   #7
social me
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All of the tests are good to have becuase it gives the GI doc and idea of (what he has seen) if you are severe, moderate, have damage to esophugus like I do. All those things to help treat you. NOW this is what worked for me but I had to push this and advocate for myself. I get B12 injections (they dont hurt a bit) I have come to loving them. At first it was every week for a month then bi weekly. After a month I noiced a hugh dif. The I pushed for an iron infusion I was anemic and body struggles with iron. Now with b12 and Iron those 2 things I can honestly say ( I feel) helped my energy helped my mood and I slowly started getting me back again. I have cut out dairy, no gluten and mostly salads, only veggie I can tolerate. Soups soft items. No alcohol and be careful and not overload your body with supplements. Vit d and magnessuim zinc and calcium together were and are great for me. I hope this help, I know everyone is dif. but we are all here, you are not alone!
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Meds:
Pristique- Anti dep.
Lamictal- Anxiety
Asacol 400mg 2pills 3x daily
Remicade First treatment for Crohns 4-12-11
B12 shots once a week

Been on Remicade for over 2 years for other immune disorder I have. Docs not sure this treatment will be effective for me as a treatment for Crohns.

Come to me and I will give you rest -- all of you who work so hard beneath a heavy yoke for I am gentle and humble, and you shall find rest for your souls; Matthew 11: 28-29 TLB
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