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I was told to buy some stool softener yesterday so I will try it . I'm just confused as to how my symptoms come and go without any treatment . Surely with colitis this wouldn't happen
 
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.
 
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.
 
cmack said:
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.
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Thank you I 'll let you know how things go
 
Jabee said:
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.
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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 went and saw my GI doctor yesterday for a f/u appointment and I am so glad that I found her. She seems to be the only doctor who really takes the time to understand my symptoms and understands how sensitive I am to certain foods and medications. The Xifaxan she put me on last time didn't do anything to improve my symptoms so we are going a different route to try to get a handle on my dyspepsia and nausea symptoms as well as my IBS-M. She gave me a sheet on low-FODMAPs and asked me to follow it strictly for 2 weeks and then slowly add things back in to see what foods bother me as the food allergy test is not 100% conclusive and I may still have allergies to foods that didn't show up - like corn. Also, she has asked me to restart my Paleo diet for weight loss as I did that before I had surgery last year and lost 20 lbs. The only thing I'm having trouble with right now is what to eat! My diet will be very restrictive for these 2 weeks and I went to the store with the low-FODMAP list in hand and had to put things back on the shelf because it contained stuff that was on the list. My favorite veggies are all high-FODMAPS (broccoli, Brussel sprouts, artichokes, asparagus) which is difficult! Thankfully, I can still have squash (zucchini, spaghetti, acorn, pumpkin and butternut are my faves, as well). I'm going to have to be creative. Rice is allowed on low-FODMAP but not Paleo as it's a grain. I also have to lower my dairy intake and only eat/drink lactose-free dairy. Fortunately, I found some cheese that is lactose-free and bought DairyPure lactose-free milk last night. I plan to buy Organic Valley's LF version though as I love their milk. I can also substitute almond/coconut/hazelnut/other nut milks in place of dairy but no soy is allowed (I think I'm allergic or intolerant to it anyway?.

So, anyway, I'm starting off slow this weekend as I just went to the store and bought groceries so I'm planning to finish those and then start as I don't want to take it back or throw it away. I'm also weaning myself off diet soft drinks (i.e. Coke Zero :( ). Those are my real weakness so I'm going to have to find a good replacement. I love green tea so I might do that. :)

If anyone has any good recipes for Paleo diets that are low-FODMAP friendly, let me know! I'm doing some shopping for good cookbooks as I will need to be creative!
 
Hey MissLeopard,

I hope you are able to make the transition to your new diet fairly easily. I found it hard to become 95% vegetarian at first. Now it seems pretty normal to me. I'm allowed to cheat 5% so I make it something good like crackers and cheese. :)

I used to be a diet pepsi or diet ginger ale fan. My doctor said the artificial sweeteners are straight up poison and that they kill our natural gut flora, besides stevia which actually comes from nature. I quit drinking that stuff and switched to Brita filtered water. I only drink water now and I find I no longer miss the other stuff. I do also have 1-2 coffee or green tea in the morning and the odd beer in the late afternoon. Other than that I don't really want anything else. Once I went for a while without soft drinks I found that I don't even want them anymore.


Best of luck to you,

Chris
 
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.
 
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Thought I would pop in with a quick update, Elemental is going SO much better! I had a little bit of diarrhoea at the start but now if anything I'm edging into constipation most of the time which is I guess not perfect but frankly personally is a lot better than the diarrhoea was! Because it's been a significant drop in calories from before while we build up I have lost weight but I'm not worrying about that. It will come back. Oh and I've got my rate up to 80ml an hour which is amazing. So yeah, overall it's all going pretty good :)
 
Jabee said:
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.
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Both goat and sheep cheese are allowed on Paleo since they are not actual dairy cheeses made from cow's milk. Both are allowed on the low-FODMAP diet since they are lactose-free, as well. Also other cheeses are allowed on low-FODMAP diets like Parmesan, Swiss, cheddar, etc. but dairy is strongly discouraged in the Paleo diet. I did the modified Paleo (aka Primal) diet before so this time around will be more restrictive. Both diets strongly encourage cooking your own food so you know exactly what goes into it and can get better results. I'm looking online for cookbooks and recipes so I can get a good idea of what to make. :)
 
I've received a copy of a letter the specialist sent to my Dr which states on examination I have a couple of small skin tags with associated mucosal prolapse and on rigid proctoscopy it looked like distal proctitis but I need the flexible sigmoidoscopy to assess this mucosa and biopsy it again . My understanding after consulting Dr Google is mucosal prolapse is rectal prolapse and distal proctitis is inflammation of the rectum going up to the sigmoid colon . Is that right As she told me the inflammation was only around 1cm
 
I have had a pretty rough week. I called out sick on Monday after not feeling well last weekend - I couldn't put my finger on why I felt so bad. This whole week, I just didn't feel well. Thursday, it got really bad - I called my mom from work because I was having horrendous pain in my pelvic area on the right. I was doubled over and crying I hurt so bad! She picked me up and I made an emergency appointment with my OB/Gyn since I thought it was a ruptured ovarian cyst like I had last year. I was so nauseous, too. The doctor said she couldn't find a mass in my pelvic area, but prescribed pain medication and told me to report to the ER if the pain gets worse or I run a high fever because it could be my appendix. Yesterday, I called off work again because I was having cramping again and a low-grade fever. I spent most of the day resting and I'm doing the same thing today. I'm having a sonogram on Monday at 11am to check for cysts or other things that could cause the pain I was experiencing. I'm really worried I may need surgery again like last year. :(

As a result of this past week, which was the same week I started class, I dropped my classes - opting to wait until next semester at least. The subject was nothing to mess around with and I don't want to risk having problems because I'm having surgery or something. I am also planning to move this November to my first apartment when it's done being built and exams interfered with the dates I'm expected to move.
 
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. :)
 
MissLeopard83 said:
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. :)
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Will pray.
 
I got the ultrasound yesterday and I was right - I have a ruptured/hemorrhagic ovarian cyst on my left ovary. The good news, at least for now, is that it's not bleeding. It only released serous fluid and seems to be resolving on it's own, but the doctor told me to contact the office immediately or go to the ER if the pain becomes unbearable or new symptoms develop. I'm praying it resolves completely on it's own because I do NOT want a 3rd surgery within a 12 month period! If it gets worse, they will have to perform a laparoscopic cystectomy. Last time, the doctor left my right ovary intact, so I'm hoping, if it happens, that I will not have to have an ovary removed (although I'm tired of this happening!). :(
 
Thank you both. The most surprising thing to me is that, between my visit on Thursday and my visit yesterday to the doctor, I lost 3.6 lbs! I was wearing the same type of clothing, too, and shoes. My appetite has been really poor - I don't eat a lot when I'm not feeling well. I've also been fighting off a low-grade fever the last several days which the doctor said she thinks is from a virus, but I think it's likely a result of the fluid from the cyst leaking into my peritoneum and causing inflammation. My mom suggested that I get some nutritional supplements and I went to the pharmacy and bought some ProNourish shakes so I can keep up on the low FODMAP regimen. I'm hoping that, within a few days, I'll be feeling much better.
 
This morning has not been a good morning at all. I woke up at 4:30am SOAKED in a puddle of sweat. My pajamas were soaked thru and my sheets were damp. I promptly woke up and changed and I also took my temperature which was 96.3! I couldn't believe I could sweat so much with my temperature being so low. My usual temperature is in the 97.4-97.6 range (I have hypothyroidism). After staying out of my bed for a while to let the dampness dry, I got back in bed and was freezing. I always have a blanket on my bed and even that couldn't warm me up.

Since getting into work, my cramps have continued to worsen and my left side feels inflamed. I'm thinking of calling the doctor back to tell her because I'm worried about an infection from the cyst fluid. I really want to go home but I'm afraid I might lose my job. :(
 
I ended up leaving work because I was in horrible pain and my doctor wanted to see me ASAP. After seeing her, she's put me on medical leave until further notice and I have surgery on the horizon if it doesn't resolve soon. She seems to think that a laparoscopy to remove the cyst and check for endometriosis is warranted. It sucks to be out of work, but I cannot take the pain medicine while I'm at work and Advil doesn't work by itself anymore. :(
 
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
 
akgirl said:
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
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Unfortunately, there is nothing that will prevent it 100% besides a bilateral oophorectomy. Most doctors prescribe birth control to prevent ovulation but my body is so sensitive to medications that I cannot tolerate it in any form - pills, shots, patches, etc. I am currently on Metformin, which is a diabetic medication, because it is supposed to reduce insulin resistance which in turn reduces testosterone formation and helps the ovaries release follicles normally. My cyst is a "functional" cyst which means that, because my ovary didn't release an egg at the time it was supposed to, fluid began to build up. Therefore, I don't think the Metformin is working the way it should with me. I don't know what else I can try. I am scheduled to see my endocrinologist again on Sept. 28th and I plan to ask her what I can do since she prescribed the Metformin.

I was up late last night into this morning because of pretty severe anxiety. I was very tired but my body was in overdrive and would not let me sleep. I finally fell asleep at 4:30am after experiencing cramping and I took another painkiller. This morning, I woke up and my whole left side is just really inflamed. It feels like I have a balloon on that side because there is a lot of pressure. :(
 
cmack said:
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.
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It helps to know I have a community that cares just like I care about you all. ;)

I have a f/u appointment tomorrow with my gynecologist to ascertain if I do, indeed, need surgery. I'm certain I will because I struggled this whole weekend with pain issues - especially last night. I think I had either another ruptured cyst or the other one tore some more because I went to get up off my bed and had to get down on the floor because the pain over my left hip was horrible! It felt like something was ripping inside me and that's how it felt on the 24th when the first cyst ruptured. I had to take a Vicodin to get it to stop because Advil wasn't working. I could have surgery as early as this Wednesday. :(
 
cmack said:
I hope the pain goes away soon. Hang in there MissLeopard.
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Thank you. Unfortunately, my worst has been confirmed - I have been scheduled for outpatient surgery tomorrow afternoon. The doctor performed another ultrasound and saw that my left ovary has MANY cysts on it (I have PCOS) but could not see the hemorrhagic cyst that was there last week. Therefore, she is opting to do the same surgery I had last year - laparoscopy, hysteroscopy, and D&C - to figure out the cause of my pain. She, too, seems to think I have endometriosis which is what my last surgery was supposed to diagnose. Either it was missed or not visible at that time. Since I wasn't in pain during my last surgery, I'm hoping this will provide more answers. I'm thinking, if it's not endometriosis, it could be an infection from the burst cyst. My mom wonders if I have diverticulitis because of painful bowel movements, but that can occur with endometriosis and cysts.

Please send your prayers. I am very confused and upset about surgery again but I accept that it's necessary so, while I'm reluctant, I agreed to it. At least, if there are no complications, I'll be able to go home tomorrow but I'll be out of work for 2 weeks, at least, since that's how long it took me to recover last year. :(
 
Hi MissLeopard,

I'm sending you my prayers. I wish you a successful surgery and speedy healing. I know it sucks to have surgery, maybe they can get you feeling better this time. Keep in touch.

Best of luck,

Chris
 
MissLeopard I've only just caught up on everything and I'm so sorry you have to go through surgery again. I hope all goes smoothly and will be thinking of you!
 
Thank you, everyone. It really sucks, but I might have more answers to my problems, so I'm hoping that the doctor is able to find what's going on. I'm planning to ask either this doctor (gynecologist) or my endocrinologist in the next few weeks about starting on micronized progesterone to stop these cysts from growing. I'm very sensitive to traditional hormone therapy but natural might be the way to go. I printed out an article about managing PCOS and it even has the dosage on it. :)
 
MissLeopard, I'm so sorry you have to have surgery again! But at least it will hopefully provide you with some relief from all the pain you're experiencing. I know it's hard to look on the bright side when it seems like everything is falling apart, trust me! I hope the surgery can also give you some more answers. I'm glad you've done your research and are equipped with info to give to your doctor! Please keep us updated. I'll definitely be thinking about you tomorrow.
 
I just caught up, too. I'm sorry to hear about your surgery miss leopard but I hope it helps.

Wishing everyone well. Lots of updates and it seems like there has been some good progress as well as some setbacks. I messed up and must not have checked when I was sent an email, and I just thought the thread went quiet. Oops.

My GI issues have calmed down. Not quite back to normal, but definitely tolerable. Focusing on other medical issues and trying to get back to being a more functional and healthy me.
 
MissLeopard, good luck with your surgery! I hope it answers your questions, and allows you to feel much better for a very long time.
 
I had surgery yesterday and it went fairly well. Unfortunately, my mom was not informed by the doctor about what happened because she couldn't find my mom, so I will have to wait. The nurse said nothing abnormal was found, which is good news. I have two incisions - one in my belly button and the other on my lower left side. The belly button one hurts the most! I'm taking Vicodin every 6 hours and I'm waiting for my pharmacy to fill the higher dose but they had to special order it.

I checked in yesterday for what I thought would be pre-admit testing at 8am but they ended up checking me in the whole day. I had to call my mom and ask her to get my dad to drive her down so I wouldn't have to leave my car in the parking garage. I had an anxiety attack while waiting for her to get there but the nurse was very sympathetic and I was allowed to take an Ativan. I ended up getting bumped up in line because the first case of the day did not show up in time and I was already prepped and ready to go so I went in about 1:30pm instead of 4:20pm, which was great! :)
 
Thank you! My belly button is very sore today and I look like an Oompa Loompa from the betadine. I'll be able to take a shower tomorrow and wash it off, though. I have steri-strips on the incision sites which were also covered with surgical glue (Dermabond). I've been sleeping quite a bit today. I still have the scopolamine patch on that the anesthesiologist gave me and have had no nausea since the surgery. I think it was the easiest one to date. :)
 
Thank you! I just took a shower to wash off the Betadine so I don't look like an Oompa Loompa anymore. Still waiting for pharmacy to fill my higher dose of Vicodin - they had to order it and it hasn't come in yet - so I'm still using my lower dose every 4 hours. Yesterday, I couldn't stop dozing off. I'm still wearing the scopolamine patch, too, so I'm still nausea-free. Maybe I should ask my GI doctor to prescribe some when I see her later this month. Lasts longer than Zofran, too. :)
 
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. :)
 
MissLeopard83 said:
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. :)
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Hope you feel better soon.
 
Wow! That higher dose really knocks me out! I went from 5/325 of Vicodin to 7.5/300 and I need a nap everytime I take it. It's doing a great job keeping my pain at bay, too. Definitely takes the edge off. I've been trying to move around a little bit more by walking around the house and that's helping, too. :)
 
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:
 
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.
 
gadgetninjette91 said:
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.
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Glad for your good news.
 
ChronicallyAwesome said:
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:
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Boy that sounds tough, feel free to come here and talk often. Welcome to the forum.
 
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.
 
MissLeopard83 said:
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.
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Hope they come uo with answers soon.
 
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!
 
cmack said:
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!
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Thank you!

My appointment at the GI went well - I LOVE my doctor! She is absolutely wonderful and VERY thorough. I always feel like it's a productive visit when I see her because she puts me at ease and makes me feel like I matter. She came up with a great action plan that I am very comfortable with - she prescribed me Levsin to ease the cramping/spasms I've been experiencing since Dicyclomine didn't work that well for me (the new one works very well; already used it once and it takes 10-15 min), she gave me a sample of Linzess to stimulate peristalsis since my bowels were very quiet when she listened to them, and she also wants me to start Compazine for nausea as needed instead of Zofran to see if it helps with constipation. If my nausea gets worse, we will explore other options - such as a repeat GES test - but she thinks that it will get better since my constipation won't be quite as severe with the new medication. Hoping it all works out!
 
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.
 
Cat-a-Tonic said:
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.
Click to expand...

I've taken Compazine before and never had any problems, so I know it's safe. I took 2 doses of the sublingual Levsin last night and it's really helping me with the painful spasms/cramping and doesn't seem to be bothering me at all, which is good. The only one that I haven't figured out yet is the Linzess - I took a capsule today since my bowels are VERY sluggish and quiet and I will probably be staying close to a bathroom since my doctor recommended I take it on a day where I don't have to do anything. Hopefully, it works. I haven't felt anything yet.

Thanks for warning me, however. :)
 
I recall that I was on Levsin for about a week with no issues, and then the vomiting and nausea came on very suddenly - I had eaten dinner just fine, but then suddenly vomited it all up. I vividly remember that my brother was living with me at the time, he had just brought home some Indian food for himself and the smell of it made me have to vomit, and my brother held my hair while I puked in the kitchen sink. Uck. My GI of course advised me to immediately discontinue Levsin, which I did, but I was still so ill for a few weeks afterwards. So just keep an eye on things, just in case. I think I read somewhere that about 5% of people on Levsin get nausea and vomiting as a side effect, so you'll probably be fine, but my experience was just so miserable that I wanted to convey it fully. Those are the only 2 meds listed in my medical file as meds that I should never, ever be given (I told them to put down in my file that I'm allergic to both, even though technically I'm only allergic to Compazine). I literally cringed when you mentioned those two meds! :p But of course your experience will probably be much different than mine, and hopefully you'll have a much better experience than I did!
 
Did anybody ever notice that usually somewhere in the list of a drugs side effects, usually near the top, there is mention of worsening of the exact symptoms that the stuff was supposed to improve? It either gets way better or way worse... go figure!

I have had a few meds that were real doozies too Cat. It's always such a pleasure trying out new medications isn't it? ;)
 
Yep! I swear, every IBD and IBS med they've put me on has worsening gut symptoms as a potential side effect. Even some supplements are like that - I tried a supplement that's supposed to improve bladder health (I have bladder issues too, yay). I will say, it did make my bladder feel noticeably better! But, it made my guts feel pretty foul, so I had to stop taking it. Such fun being a human guinea pig and just trying to feel better but ending up feeling worse. Ugh.
 
Well, I think Linzess is actually helping! Things are definitely moving along and I'm feeling much better. This is definitely not something I would take every day, though, and I'm glad my doctor told me not to - only when I really need it. It's been about 5 days since I've been off the Vicodin, too, which I'm sure is helping, as well, since it slows everything down. I'm trying to make sure I'm continuing to drink as much as I can, which is what I was doing before but it wasn't doing the trick by itself. Still having painful spasms, but the Levsin is doing the trick. I'm only taking that as needed, too, so I don't become dependent on it. So glad to be getting some relief, but I think my IBS is becoming severe and I'm having a lot of gut motility issues now. I wish I could prevent the symptoms instead of treating them because I never feel good when I'm having bad symptoms. :(
 
My doctor was right in telling me I should stay close to a bathroom the first time I take it. LOL! I've gone probably 3 times from the moment I woke up at 10am. I feel much better, though, so I'm not complaining. I weighed myself this morning and was shocked to discover I lost another 2 pounds! My doctor said to let her know if my appetite did not return and/or I was losing weight rapidly, so I'm keeping an eye on it.
 
With small bowel crohn's I suffer from constipation. I was prescribed levsin for gut spasms as well, and ended up constipated from it, despite daily linzess and miralax. Since it wasn't really that effective I stopped it. I just thought you might want to know since you already have issues with gastroparesis.

Hope everything continues to get better.
 
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.
 
cmack said:
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.
Click to expand...

Yes, same for me. I was using it every 4-6 hours after surgery and then alternated doses with Advil until I was able to use Advil for the most part and Vicodin as needed. Finally, I was able to get off Vicodin altogether. It's been about 6 days already and I've also stopped using Advil for the most part because the Levsin has helped greatly with the intestinal cramping and pain. :)
 
cmack said:
Glad to hear it. :)
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Thank you. I'm anxious about tomorrow as it's my first day back at work after 3 weeks and I have a lot to catch up on. I'm also nervous because I haven't been doing much outside of the house because I get sore after a bit and I have to get up from my desk quite a bit during the day. I bought a heating pad, however, and will bring it to work with me to use if necessary. I will also keep Advil in my purse to use if needed.
 
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! :)
 
cmack said:
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! :)
Click to expand...

Fortunately, lifting is not part of my job description, so no worries about that. I have a relatively light duty job since I sit at my desk for most of the time, though I do have to get up and go to the nurses' stations for various periods to pick up and distributing paperwork. I'll definitely be working my regular hours and not staying any later than necessary. I don't want to push it at all. Since my surgery was outpatient and relatively minor, my recovery has been pretty easy - especially compared to last time since I do not have a painful incision in my pelvic area that is bruised like last time. My gut is giving me more problems than my incisions are. :)
 
ChronicallyAwesome, I hope you get some answers soon! I thought I had bad genes, but DANG. It definitely sounds like an autoimmune disease is very likely for you, unfortunately. But hey, at least if you can get a diagnosis, then you can hopefully get some treatment to help with your symptoms. Keep us posted! I love reading updates from people on here, especially when it's good news. And you never know if something you share might end up helping someone else.

MissLeopard, good luck on your first day back at work! I hope everything goes smoothly for you. I'm so glad you have an awesome doctor! We all know how rare that is. I'm also glad to hear that your new meds seem to be helping your symptoms. That's great!

Does anyone else on here feel even worse when it's that time of the month? (Sorry guys....) My periods were never a good time, but they were manageable. However, since I got sick, they've gotten so bad. I can feel them coming before they even arrive. And I celebrate a little whenever that horrible week is over......although my other three weeks of the month aren't a walk in the park either. Sometimes I wish I was a guy.......:) haha.
 
Akgirl, yes, my periods always made things worse - more cramping, more bathroom trips, looser stools, etc. I did get an IUD back in December, and that's been great - I basically don't have a period anymore. I will occasionally (maybe once every 2 months or so) get a teeny bit of cramping and spotting, but it's over with within an hour or two. And it's totally tolerable, barely even noticeable. It's MUCH better than before I had my IUD, for sure. If you're like me and don't want kids, that might be worth looking into. Even the insertion wasn't too bad. The nurse kept telling me to expect cramps that were as bad as contractions, and the nurse kept hovering over me and trying to hold my hand, and I just laughed at her (couldn't help it) because I didn't need her to! It wasn't nearly as bad as she made it sound like it would be and I didn't need her silly clingy comforting. I had my heating pad on my abdomen for the remainder of that evening after the insertion, but that was it. It's been great ever since. So you might want to look into an IUD. Mine has been nothing but great.
 
Thanks for all of the support! I'm amazed by how active this form is.

I called doctor #1 this morning after I got home from work. The receptionist was...unpleasant. I described what was going on, and that I needed to see my doctor sooner rather than later. She told me that the soonest she could get me is two weeks from Christmas, and that I was not a priority. :frown: (I'm established w/this doctor btw.) I asked her if she could check with the doctor first to see if she could fit me in before then. She said she would, but part of me thinks that she lied about that...I will be surprised if I actually get a return phone call from the doctor.

Anyway, I'm calling my rheumy tomorrow. I'm overdue for a check-up anyway, and I need to review my current arthritis medications with her. She's usually pretty good about "other" things outside her specialty. At the very least, she'll put in a referral to a good GI doc.
 
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.
 
Jabee said:
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.
Click to expand...

I agree. I also hate when non-medical staff attempt to judge the severity of your concerns. I'm one of those people that doesn't like to go to the doctor for anything, and my doctors know that if I've actually went through the trouble of making an appointment, I'm pretty sick.

It appears that my rheumy is also booked for the next couple of months. I took the closest possible appointment and sent her a message for an emergency appointment. In the mean time, I think I'm at the mercy of the ER if something else happens between now and then. The lump/mass is still there and hasn't moved, although I have noticed some pain with the lump & general tenderness in my overall abdomen, including on the opposite right side. I'm currently bouncing back and forth between constipation, diarrhea, and mild nausea. Still no appetite. I've lost weight, too. We shall see... :eek:
 
Hey ChronicallyAwesome,

That's not fair when a receptionist just brushes you off like that. I have had it done to me before and it is very upsetting. I hope you are able to be seen sooner rather than later.


Hang in there,

Chris
 
I managed to get an emergency appointment with my rheumy. She immediately suspected Crohn's or UC as the cause of my symptoms. She ordered some lab tests and an abdominal CT scan. She also referred me to a GI doctor.
 
ChronicallyAwesome that's great. I'm so glad your rheumatologist (at least) is listening to you and cares enough to help. Let us know how you are doing.
 
Cat, your IUD sounds awesome! I'd love to have hardly any periods. I recently went off my birth control pill (which I've been on for 9ish years) to see if that will help with any of my 5 million symptoms.....try to balance my body out or something. I don't really know. I'm grasping at straws here. I talked to my GP about it, and she said that she thought it was a good idea for me to go off the pill because if I have IBD then the pill could increase my risk of blood clots and stuff. If you're concerned about the possibility of me having IBD, then why don't you try treating me for it?! Aaarrrrrggghhhh. Today is one of those days where I'm mad at the world. But honestly that's basically every day now. At this point it just feels like everyone has forgotten about me. I actually think it's easier for people to just ignore me and act like I don't exist rather than to realize how much I'm suffering and try to help me. Ignorance is bliss, right? But it's like purposeful ignorance. It's honestly the strangest thing though. I tell my close friends and family that I don't want to be alive anymore (I'm not suicidal.....I just don't want to live like this anymore), and they literally don't care. They basically just ignore it. I'd like to just go live in the middle of nowhere with my cats. Okay, done with my whining.....

ChronicallyAwesome, it sounds like your rheumatologist is one of the rare doctors who actually listens! Hold onto her! Hopefully this will be a big step in the right direction for you. Definitely keep us posted!

How's everyone else doing?
 
Chronically Awesome - sorry to hear about the receptionist, but glad you were able to get through to your rheumy. That's great the tests are already ordered. I hope the GI can see you soon.

Miss Leopard - my test was like that too. One egg, 2 pieces of white bread, jam, water. The bread and jam may have been buttered. I had 12% left after 4 hours and their cutoff was 10% so I wasn't diagnosed with gastroparesis. My GI nurse and I both thought mild gastroparesis was the best explanation for a lot of my symptoms and weight loss but it was post infectious and the test wasn't given until 4 or 5 months after I had the infection when all my symptoms were much milder (though still there). That said, the dietary recommendations for gastroparesis helped a lot so I just followed them.

AKgirl- my periods always caused bad cramping and diarrhea, even before I had GI issues. I got an IUD over a year ago to prevent blood loss (anemia issues, but other issues make it better not to take iron. I did have bleeding early on with the IUD - one stint with 10 days straight for no reason. Eventually the heavier bleeding stopped, though. My periods aren't totally gone, but it's just spotting really and no crazy cramps. It helped a lot for me though it isn't enough to stop my needing extra iron. Might be worth a go. Also, I was having problems with Depression and I think a lot of it was from all the difficulties relating to my chronic back pain. I didn't see a therapist, though that would have been a good idea, but I told my back doctor who I am pretty comfortable around and he put me on an antidepressant that is also used for pain. (Cymbalta). It hasn't fixed everything but it was helpful both for pain and mood. I just asked to increase the dose as I would like more help with the depression. I am really tired from it, but that went away last time and hoping it will again (fingers crossed). I think it's pretty normal to have problems with depression with chronic illness and there are things they can do to help. (Hugs)

I wanted a bit of Home treatment advice. For some reason I am having bad intestinal cramps today. They started during the night and I slept really poorly. It eases up a bit sometimes but at other times it really hurts. It feels like cramping and my whole abdomen feels tender. This isn't an ER issue or anything like that, but any advice on home treatment that might help? I tried a heating pad and it helped a bit. I am backed up atm and I used some glycerin suppositories to move things along and that helped a bit. Took some Colace this morning.

I think I ate too much yesterday. I haven't been interested in food recently and my weight is dropping a bit but I've made myself get enough protein and a decent amount of calories. This morning I was burping and it tasted like my protein drink from 12 hours ago. I think I may be having a spell of the mild/borderline (undiagnosed) gastroparesis that caused me so much weight loss this year. I think I can keep my weight from falling too much, but I really need to do something about the pain.

Any advice for making it hurt less?
 
Dahlia, do you have anything like bentyl/dicyclomine for cramps? That's what I take, sometimes it works okay and other times it doesn't really work for me. Maybe call your doc and see if they can prescribe an anti-spasmodic like that for you as it could help. I unfortunately haven't found anything that's a surefire way to stop my gut cramps, though. A heating pad or a hot bath can help some. Distractions can also help - if you can watch a movie, or knit/crochet something, even build something with legos (since my hospitalization last year, that's become my favorite distraction, and now I often have a new lego set put aside for the next bad belly day). Anything like that which isn't physically taxing but distracting enough to at least partially help you forget the cramps even for a few minutes.

In my experience, colace can sometimes cause some cramping too. Do make sure to drink a lot of water if you're backed up, that will help. I was always told that room temperature water is best, not too cold, as cold water can also cause cramps. Feel better!
 
Akgirl, you mentioned stopping birth control pills - I stopped taking birth control pills shortly after I got sick. I was having so much diarrhea that I was scared that I wasn't absorbing enough of my pill, and I don't want kids at all, but I especially did not want an oopsie to happen when I was already so ill! So at that time, they switched me to nuvaring, which worked well for me for about 7 years until I got the IUD. And I recall that I did feel much better for a few days after coming off of the pill, I don't know if it was my hormones adjusting or if by having the ring that I was actually getting the proper amount of hormones, or what. The only reason I came off the ring and switched to the IUD was that I was terrified by the incoming presidential administration and their stance on women's reproductive rights. I had read online that many women freaked out and got IUDs in December right before the inauguration, and I'm definitely one of those women! I had the added benefit of having had already reached my out of pocket max on my insurance last year, so I didn't pay a dime for my IUD.

As for family members not caring, I've been there and done that too. My mother still thinks that gluten is the root of all evil and that if I just went gluten-free that I'd magically be cured forever. My brother has some sort of undiagnosed mental illness, and he very incorrectly thinks that I can somehow just wish myself into being better. I'm not even joking, he's literally told me that if I want it badly enough that I can make myself better. I was like, um, no, and thanks for being super rude and victim-blaming. I had to block my brother from my facebook page because I just couldn't deal with his nonsense anymore. Thank goodness for this forum, because I know you guys get it. And I hope you do have at least one or two supportive people in your life. For me, my dad really tries to be supportive. He's totally clueless, I can see complete lack of comprehension in his eyes whenever I try to tell him anything to do with medical terminology, but he cares and that's enough. He's the only person in my life who asks me how I'm doing, and when I automatically say I'm fine because that's just what we do even if it's a lie, he says, no, really, how are you really? He can see through that BS facade of "I'm okay" that I put on when really I'm not okay. So I hope you have somebody like that in your life, too. If not, please know that all of us on the forum do get it and do care about you and go through similar stuff and are here for you. :)
 
Hey Dahlia,

Sometimes gas can be very painful for me. I have been known to take Eno and have had nearly instant relief from bad cramping. You have to separate it from other meds by a couple hours or so, it says on the literature inside the box. It might help.
 
Hi akgirl,

I agree with what Cat said. We get what you mean, these diseases can be very terrible emotionally. It is easy to feel like nobody "gets it" or nobody cares, but people do care, it's just that if they haven't been through this stuff it's so hard for them to grasp our situation. I hope you are having a better day.
:rosette1:
 
Thanks for the advice! Don't have prescriptions but I took peppermint oil which is antispasmodic (much milder, I'm sure) and a medicine for gas. Using the heating pad too. It isn't helping yet but maybe it will after a while. We have a cold running through the house so I feel crummy, but I think that is the virus. Thank you again for the advice!
 

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