- Joined
- Sep 14, 2016
- Messages
- 7
Hi. I hope you get a diagnosis soon.
Thank you
Hi. I hope you get a diagnosis soon.
I'm not to sure about colitis Shelly as I seem to have gotten more crohn's type symptoms. All I know is when things hurt inside my rear end from fissures and hemi's,the lactulose made it so at least I wasn't in so much pain that I was afraid to use the toilet. I hope it helps you and things start getting better. Keep in touch.
The symptoms have always been very intermittent and have only ever been slight bleeding and mucus this never changed whilst on the asacol . He said the inflammation could have been caused by the prep but that was the only explanation I was given . I 've never been checked for infection but have read it could cause proctitis symptoms so maybe that's something I need to ask . The colorectal surgeon has said the small amount of inflammation I have now could be from the constipation and hemmorhoids but I'm never given a definite answer only could be . Would I have more symptoms with crohns?I would be confused, too! I'm also puzzled as to why your GI felt you should stop the asacol. Were your symptoms no better while on it? Did he give you any idea what had caused the proctitis? And your recent exam showed inflammation again? If your symptoms improved while on asacol, even if the biopsies were negative (most biopsies are "negative" for crohn's patients; the biopsies don't show signs of crohn's specifically), why was there inflammation in the first place? An infection? Was he saying his previous diagnosis of proctitis was incorrect and that you never had any rectal inflammation? Sorry for the barrage of questions! I would think you could ask for a full colonoscopy not just a sigmoidoscopy so that they can see the entire colon. Let us know how you go on.
Hi MissLeopard:
I don't drink much milk anymore because I'm fairly sensitive to it (found that while I was teaching in China and not drinking milk for over six months). I haven't been tested for "official" lactose intolerance but that doesn't matter much. But I love Organic Valley lactose-free milk too! It's the only milk that tastes like actual milk! Can you eat goat cheese or sheep's milk cheese? I can't remember whether only specific cheeses are allowed in the Paleo diet. Hope the new eating regimen helps.
Will pray.Thanks everyone. I have gotten a lot of rest this weekend - even missed Church today - because I wasn't feeling well. I have my ultrasound tomorrow and I'm missing work for the morning and planning to go in afterward. I can't afford to miss anymore time as I have no more PTO left. Please say some prayers that I feel well enough this week to work like usual.
MissLeopard, it sounds like you've had a horrible week! I hadn't been on to read everyone's posts in a while, so I read all your updates all at once. Whenever I'd read one, I'd be hoping the next one would say you were feeling much better, but it never did. I'm so sorry! I really hope they can get things straightened out for you. That really doesn't sound like any fun at all. And three surgeries in 12 months is ridiculous! Is there anything they can do to help prevent this in the future? Besides take out your ovaries. I hope you've been able to get some rest. <3
Have you tried spiralactone ?
It reduces testosterone/cyst formation as well
Well if all else fails I'm still here to have a chat. I'm so sorry for you to be struggling like this, I wish there was more I could do to help.
I hope the pain goes away soon. Hang in there MissLeopard.
Finally got the higher dose of pain medicine today after my pharmacy received their stock. I've been staying in bed most of the day today since my belly button is still very sore so it hurts to get up. It felt great to take a shower earlier.
Hi all, it's been some while since I've posted here (and on the site in general), and I suppose technically I'm not really "undiagnosed" anymore. But hopefully by me sharing my latest updates with you, I can offer some hope and inspiration for those of you who are still struggling to be diagnosed or taken seriously by doctors.
So basically my GI had finally seen that I was responding to being treated for Crohn's than anything else his colleague had previously tried to throw at me. He was always more one to listen and explore many approaches but at times he has wanted to blame a few things on lady problems (but ongoing anemia and only responding to IV iron seemed to have convinced him otherwise). My GP referred me to a rheumatologist last year after I reported joint pains between and during flares and ever since, things have changed for my treatment. Late June I started flaring up very badly after being stable on sulfasalazine for a year and my rheumatologist (who has taken most of my treatment into his hands while my GI stays in touch and follows up as needed) decided to try me on Cimzia which is a biologic medication. I'm 7 1/2 weeks into treatment and I definitely feel something from it, though not 100%. Doctor says give it at least 3 months and if that doesn't work, I have other options. For two years I never thought I'd ever see the day when my doctors would actually listen and gather every detail and treat me according to detailed history and test results. I did have some harmful attempts from other doctors at undiagnosing and misdiagnosing me along the way which harmed me and made me feel even more hopeless. I've been told it's all in my head or just very severe IBS (which is why I had obvious small bowel inflammation upon diagnosis, major weight loss, etc. but of course some never bothered to ask). But I hope with all of this said I can encourage some of you to not give up, to keep advocating for yourself. If you know something doesn't feel right inside of you, keep pushing for answers. Stay strong and advocate for yourself. It can be hard when you feel sick to stand up to doctors but mind over matter helps a lot and ultimately, never back down.
Sending well wishes to you all. I hope I can help those of you who are struggling to be heard.
Hi, there. Currently undiagnosed. I've had on-going constipation, diarrhea, and bloody stools for 3-4 years, which comes and goes in spells. Initially diagnosed by my GP with IBS and possible food intolerances. I initially avoided going to a GI specialist because I was afraid of the diagnostic procedures.
Lately it's been mostly diarrhea, urgency, and an occasional embarrassing episode of incontinence. Over the past 1-2 weeks I've noticed a small baseball sized lump on my abdomen that definitely wasn't there before. I've also had increasing diarrhea, bloating, lack of appetite, and a feeling of fullness after eating a few bites of a meal. I'm hoping to get an appointment with a GI specialist soon.
I also have: undifferentiated inflammatory arthritis (undifferentiated due to having high sed rate and positive ANA), fibromyalgia, scoliosis, Vitamin D deficiency, osteopenia, Hashimoto's thyroiditis, and PCOS. I have a + family history for UC, stomach cancer, SLE, RA, Type 1 DM, and a few other illnesses that I'm probably forgetting. I'm a regular old autoimmune genetic jackpot. :stinks:
Hope they come uo with answers soon.Well, it seems I did not have any signs of another ovarian cyst or endometriosis during my surgery 2 weeks ago but I'm still having issues with severe cramps. This morning, I was trying to get ready to go run my errands and my stomach was cramping so much, I was feeling it in my back. I took a regular oral Zofran 4mg but it didn't work fast enough so I took another 4mg of Zofran ODT (which I like more but insurance won't approve any more refills). I have also been having problems with severe constipation alternating with diarrhea.
I see my GI doctor tomorrow and I'm going to discuss with her the possibility of re-testing for gastroparesis since the other one was not a standard test. Everyone has told me it should be a fairly good amount of food to equate to a meal and tested over 4-6 hours. Mine was 2 hours and I was only given 1 egg - not enough to accurately test for GP. I'm hoping to find another testing site other than the hospital I had it at. Also, my doctor may want to do another endoscopy and/or colonoscopy since I've been having such severe symptoms even after following a low-FODMAP diet.
In other news, I'm going back to work on Monday after being out for about 3 weeks.
The stuff we have to go through hey! I hope you start feeling better soon MissLeopard.
I totally agree about one egg not being enough food for an accurate result, you would think any doctor would be able to figure that much out. I swear they don't learn much about gastro functions in med school. DOH!
MissLeopard, eek, you mentioned the two meds I have had major issues with, Compazine and Levsin. Compazine I seem to be allergic to. They prescribed it to me when I first got sick. Not only did it do nothing for my nausea, but it made me feel dizzy too. And then, after trying it a few times over the course of a week or so, it suddenly made it hard for me to breathe. I felt like I was wearing a tight corset over my ribcage, like I couldn't expand my lungs fully. The lack of oxygen in turn made me feel like I was going to pass out. That was terrifying and lasted for about 24 hours. I will never take Compazine again!
Levsin, I wasn't allergic to it, but it did not exactly do good things for me. My GI suggested that he thought it might help "calm" my digestive system, but it basically did the opposite of that. It made me so very nauseous, and I vomited a lot. Even after I stopped taking it, the intense nausea lingered for 2 or 3 weeks after that, and nothing could even touch the nausea. I tried zofran, I tried ginger, I tried peppermint - nada. Didn't make a dent in the nausea, didn't even take the edge off. I could barely eat and I felt horrendous that whole time.
So, be aware that those meds can potentially cause some pretty awful side effects. You might want to try one at a time, so that if you do react badly, at least you won't have to guess at which med caused which side effect. I of course hope that you do not have any side effects, but I felt like I should share my experiences with you just in case you do.
I have always found that a slow taper off the opiates is the best route for me to go. If I stop any strong opioid cold turkey I may as well count on living in the bathroom for the next week. I hope things steadily improve MissLeopard.
Glad to hear it.
Be sure to take it easy and ask for help from a co-worker if you think you might strain yourself. I was always advised that light duty was required for six weeks after surgery. I'm pretty sure the weight limit was 20 pounds. The heating pad and advil sound like good ideas too, even though NSAID'S are bad my doctor has had me take advil on occasion, he said long term use was a bad idea though. Good luck!
ChronicallyAwesome:
It sounds like that receptionist is of the "it's all in your head" variety. Before I was diagnosed with celiac disease and was in incredible pain I spoke with the otherwise lovely receptionist at my GP's office. She gently suggested I was just "stressed". In the end I had every radiologist in the hospital at my upper GI series and an emergency endoscopy because there was what looked like a hole in my duodenum. With symptoms like yours you should be a "see as soon as possible" patient. I'm so sorry. I hope your rheumatologist is helpful.