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I woke up early this morning to get ready to go apartment hunting. For the first time in a while, I actually feel energized - maybe because of the task at hand? I feel a little bit gassy from yesterday's scan, but I still haven't had a BM since yesterday's mucus-filled one. I haven't taken any GI meds besides Bentyl, Align, and Pepcid. I may take some simethicone to get rid of the gas. My lower abdomen is rather puffy. I took a shower which seemed to help.
 
I really think the contrast from yesterday's scan made me constipated. Apparently, that's a common side effect. If nothing happens by tomorrow morning, I'm thinking of taking one of the Linzess samples my GP gave me. I ate some black bean chili tonight for dinner as I haven't acquired any fiber supplements. I need to get to the store tomorrow for some grocery shopping and plan to get some then.

Anyway, today's apartment shopping didn't go so well. The ones on my list were not up to standard - several were in need of repair and maintenance, while others were in a bad area. We looked at some not on my list, but I found out when I got home that they were out of my budget. It's too bad, because the ones not on the list were the best. I wanted to see another apartment that I saw on Craigslist and called the manager last night. He said to call him today and he would see if he could send someone to show me the inside. I tried to call him twice, and he never called me back after I left a voicemail. :(
 
Wow that's rubbish. I hate it when people don't return a call when you make the effort to contact them. We are getting new carpets throughout our house and a company did that to us. Their loss as the business has gone elsewhere now :)

In other news for me, I had my upper gi invesrigations last Wednesday. I had a yummy vanilla and strawberry 'chalkshake' aka barium. Not so yummy really. Just waiting in the results now. What I do know is that the barium went through me so quick they were shocked. About 50 minutes from mouth to toilet!! The radiologists comment was 'wow it's in the descending colon already!!'. The worst bit was the scowls from the other patients as I got to leave when they were still waiting for it the progress.

The things we have to do to find out what is wrong with us. You just couldn't make it up :) Keeping my fingers crossed for good results.
 
Today started with me being very fatigued at church. I almost didn't go and I nearly fell asleep several times. I think yesterday wore me out, but I also kept having to get up last night due to the fact that my bladder was irritated. I think my interstitial cystitis was acting up again (I have a mild case of IC) and, everytime I would lay down to sleep, I'd have to get right back up again. I finally decided to take a tranquilizer, but I think it made me groggy even though it was a low dose. After church and grocery shopping, I came home and ate a late lunch and then laid down for a nap around 4pm. I woke up around 7pm and felt much better.

While at the store today, I got some stuff to prepare lunches, including some chicken thighs which I plan to roast with some salt, pepper, and olive oil. I also decided to get some turkey legs to roast since I wanted more variety. Also, they had a nice package of lamb loin chops that looked REALLY good. They were a little over $11 but I decided to get them because I'm tired of just having poultry all the time. I haven't had freshly cooked lamb in a VERY long time. I seared them on either side for 3 minutes with kosher salt, fresh ground black pepper, and dried crushed rosemary in olive oil. Then, I put the pan in the oven for 10 minutes on 425. They looked incredibly good - like little T-bone steaks. I let them rest for about 5 minutes and then tried the very small one (there were 5 total) and it was INCREDIBLE. Very much worth the cost. I added it to my microwavable container with some basmati rice and fresh steamed asparagus. My mouth was watering the whole time. Fortunately, I was also cooking my dinner at the same time - chicken wing drummettes with my favorite dry Mojo with lime seasoning. :)
 
I just have to laugh! All weekend long I felt awful, could barely eat anything, having watery d. My GI said that I should do some stool samples if I'm still feeling bad, so today I called in sick to work, slept most of the morning (I was up half the night as my guts wouldn't let me sleep), then went to the lab and picked up my stool sample supplies... and now I can't go. :p Guts have calmed down, I can eat but haven't used the bathroom. Seriously. My guts have terrible timing.
 
I was very frustrated at work today because my co-worker, who recently moved next door to my office, is very loud on the phone. She loves to put it on speaker phone and then talks really loud. I got so annoyed with her that I shut my door, but I could still hear her. I think I'm going to have to talk to her about it.

I have some good news though. I finally got in touch with the apartment manager that I spoke to on Friday and my mom and I will probably get to see the apartment tomorrow. It's a studio and $520 a month in a really nice area where I'll feel safe. It'll just be me and a dog (I plan to get one of my own; there is a 25lb limit, so it'll have to be small), so I don't need a huge place. I would prefer a 1 bed/1 bath that's separate, but I'm willing to compromise for security reasons. There are other places I'm interested in, but this one is the one I am most interested in. :)
 
Miss Leopard, I would feel the same about rather having a secure apartment over a larger one. I hope it works out for you.
My migraine is finally all the way gone and now we have a houseguest for the week, Doug's brother. I feel like we're just jumping from one thing to another, tho I very much love his brother. He's just high maintenance because of some disabilities, not at all his fault, but needs extra attention when both of us don't have a lot extra to give right now.
Cat, it sounds like your timing is a good as ours would be. I hope it works out. :)
Starnett, Doug's initial test like that was similar. The hospital said he "broke the landspeed record" for that hospital, but he was even faster, they were only able to x-ray once before it was gone thru him. I hope you get some answers quickly. Waiting is so hard.
Exhausted, hope all are well as can be.
 
MissLeopard, have fun finding a dog! I have a corgi - you'd think they're small dogs, and some corgis are small, but mine is about 41 lbs. :p She's quite a large corgi! She wears a size XL harness. So yeah, I'd say corgis are great dogs, but might not fit the weight limit for that apartment.

I finally got my stool samples all done. I called in sick again so hubby is going to take my samples to the lab on his way to work. When I was at the lab yesterday receiving my instructions, they said that loose, watery diarrhea works best for the stool tests. I was like, no problem! That's all I've had lately! So yeah, my samples took awhile to get (I literally finished the last one this morning when I woke up) but I had the ideal type of stool. I see my GI next week Monday so hopefully the results are back by then.

Sandy, I'm joining you in the exhausted club today. I feel like my body isn't absorbing any actual calories or nutrients from my food. I've lost another lb since yesterday and I had made an effort to eat yesterday because I knew I had to do those stool samples. (Before this flare started, my weight was at about 146 lbs - this morning I weighed in at about 137, so I'm down about 9 lbs so far.) It's exhausting not getting enough energy from my food, and I haven't been sleeping well either.
 
Cat-a-Tonic said:
MissLeopard, have fun finding a dog! I have a corgi - you'd think they're small dogs, and some corgis are small, but mine is about 41 lbs. :p She's quite a large corgi! She wears a size XL harness. So yeah, I'd say corgis are great dogs, but might not fit the weight limit for that apartment.
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I thought a corgi would be a good idea, but my mom's friend had one and she was pretty hefty, too, so I'm putting that idea out of my mind. I've been looking online for Craigslist ads as well as a really good pet store here in town that a friend and her husband purchased their puppy at. They have some mini Goldendoodles that don't weigh over 25lbs. I LOVE Golden Retrievers and Goldendoodles have great personalities, so that is a very real option for me. I also saw some adorable Cavalier King Charles Spaniels listed. I'm going to stay away from any terrier breed since they are high energy and need a lot of exercise. I don't need any mischievous or yappy breeds (don't need to aggravate the neighbors). ;)

The ideal would be to find a rescue dog at the humane society or animal shelters, but they seem to have only medium and large dogs. I've even looked on Petfinder and haven't found anything, which is a shame. I want a young dog, but it doesn't have to necessarily be a puppy. All I find are senior dogs.
 
Cat-a-Tonic said:
MissLeopard, have fun finding a dog! I have a corgi - you'd think they're small dogs, and some corgis are small, but mine is about 41 lbs. [emoji14] She's quite a large corgi! She wears a size XL harness. So yeah, I'd say corgis are great dogs, but might not fit the weight limit for that apartment.

I finally got my stool samples all done. I called in sick again so hubby is going to take my samples to the lab on his way to work. When I was at the lab yesterday receiving my instructions, they said that loose, watery diarrhea works best for the stool tests. I was like, no problem! That's all I've had lately! So yeah, my samples took awhile to get (I literally finished the last one this morning when I woke up) but I had the ideal type of stool. I see my GI next week Monday so hopefully the results are back by then.

Sandy, I'm joining you in the exhausted club today. I feel like my body isn't absorbing any actual calories or nutrients from my food. I've lost another lb since yesterday and I had made an effort to eat yesterday because I knew I had to do those stool samples. (Before this flare started, my weight was at about 146 lbs - this morning I weighed in at about 137, so I'm down about 9 lbs so far.) It's exhausting not getting enough energy from my food, and I haven't been sleeping well either.
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I had to give a stool sample yesterday also. It was really soft. Hope the best for you Cat.
 
I have a job. O M G.

The memory care assisted living homes I've been volunteering for? Well, it's a 90 day trial to see if it works out for all of us, but it's a job. I'll be doing face to face marketing for them. I'll work from home 1.5 days a week, and be on the road just 1 day a week. 2.5 days a week total. Perfect! Of course we have to see if that is enough time to really get everything done. Right now it feels right. The one day a week I'm out and about, I've already worked out a deal with my dad to help transport my youngest to school.

Now if I could just get my health totally under control.

Cat - yes, Plaquenil takes 3ish months to work. So I am staying on it for now. My initial rx was 90 pills anyway.

I also just emailed 3 rheumatologists, in the 3 towns sorta near me, to ask if they would see me. I know I could have called their offices, but I feel like this is a lengthy message to leave that could get lost in translation. Now I have to hope that the emails listed on rheumatology.com are up to date!

I tried asking my Opthamologist about it yesterday, but that got totally confused. See, I found out that the test that the University Rheum dept says is not diagnostic, is the same test that the new Bausch & Lomb early Sjogren's test uses, and on their website, if you test >50 in that test, with clinical symptoms, it warrants a referral to rheum. So I asked my Opthamologist his opinion of that, and if he thought they'd be more receptive if we re-ran the test as the "brand-name" test. He responded that I have to ask the ordering physician about all test results. Ugh. So I got back to him that the ordering physician already diagnosed me, but now she's GONE, and that rheum is trying to take my diagnosis away, and I wanted his, third, opinion. He responded on a totally different tangent, saying, "If you are staying on Plaquenil, you need to have your visual fields and eye exams regularly, yes." W T F??? The good news is I see him in person, for that exact exam, in just 3 weeks. Maybe we can explain ourselves better then.

On the tummy front - increasing immodium is helping some. So that's good.

Now that I'm paying attention to it, I do get "stuff", mostly liquids, but when I tried going out with a friend, for a "real" meal, once I got home and was moving around doing stuff that required bending over and using tummy muscles there were "food stuffs" coming up...and it made me think "yes, this has happened before... huh" I guess I kinda just thought everyone got "stuff" burps from time to time. So far, though, I'm still getting it even taking omeprazole (although I'm just taking 20mg every morning right now). I think my wedge pillow arrives today. Hope that doesn't take too much adjusting to sleep on. I feel bad for my esophagus and feel like I should give it a break.

Wow, this got long!

Wishing everyone health!!
 
MissLeopard, yes, I should have said that rescue dogs are the best! My corgi is purebred but also a rescue (her previous owners could no longer keep her). We've got a small house (about 1000 square feet) that's right near a very nice dog park, so we wanted a smallish dog and were looking for corgi mixes at the humane society. Then Lily sort of dropped into our laps, one of her previous owners was my co-worker and she had put out the word at work that she had a dog who needed a home. It was serendipity for all of us - Lily needed a home and we wanted a corgi! :)

Lilyscarf.jpg


Wildmtn, congrats on the job! I'm sure you'll do great. It takes a special kind of person to work in memory care - the staff at my grandma's facility have all been extremely patient, kind, and understanding (and I know my grandma has given them some trouble, she gets in very bad moods and she gets paranoid & delusional, and she's always been extremely stubborn even before the dementia came along). If you've already been volunteering in memory care then I'm sure you're a fantastic fit for the job.

I'm feeling so crappy today. I don't really know what to do. Everything I eat is going right through me and comes out as orange d, sometimes with undigested chunks. I called in sick yesterday and today. I have FMLA but I'm basically out of PTO for the year (I used 3 weeks of PTO when I was in Japan in April). So if I call in sick anymore, I don't get in trouble, but I don't get paid either. It sucks. I see my GI on Monday so I have to figure out a way to be semi-functional until then. Although I'm considering seeing if my GP has anything sooner and/or maybe just going to urgent care. I can't keep losing weight and getting weaker and I can't keep missing work (I can't afford it and I know that work is piling up). Ugh. I'm just feeling so crummy both physically and mentally today.
 
Okay, so I thought it over, and I talked to my hubby. He gets done with work at 4:30 today, and if I'm still feeling this crappy, he's going to take me to urgent care. I think that's a better bet than my GP, I can get IV fluids at urgent care. I'm wondering if they'd prescribe me a short run of enteral nutrition, too.

I'm also wondering if they could do some bloodwork to see if I have an infection. I won't get the stool test results for a bit, but I'm really starting to wonder if this is an infection. It seems to be getting worse, in spite of me being on steroids. Usually steroids are great at getting flares under control, so maybe this isn't a flare. I don't know.
 
Cat-a-Tonic said:
Okay, so I thought it over, and I talked to my hubby. He gets done with work at 4:30 today, and if I'm still feeling this crappy, he's going to take me to urgent care. I think that's a better bet than my GP, I can get IV fluids at urgent care. I'm wondering if they'd prescribe me a short run of enteral nutrition, too.

I'm also wondering if they could do some bloodwork to see if I have an infection. I won't get the stool test results for a bit, but I'm really starting to wonder if this is an infection. It seems to be getting worse, in spite of me being on steroids. Usually steroids are great at getting flares under control, so maybe this isn't a flare. I don't know.
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Hope you feel better soon, Cat.
 
Cat-a-Tonic said:
MissLeopard, yes, I should have said that rescue dogs are the best! My corgi is purebred but also a rescue (her previous owners could no longer keep her). We've got a small house (about 1000 square feet) that's right near a very nice dog park, so we wanted a smallish dog and were looking for corgi mixes at the humane society. Then Lily sort of dropped into our laps, one of her previous owners was my co-worker and she had put out the word at work that she had a dog who needed a home. It was serendipity for all of us - Lily needed a home and we wanted a corgi! :)
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I'm sorry you're not feeling well. :(

My mom's friend's dog was named Shelby - a name I've always liked since Steel Magnolias. She was a Pembroke Welsh Corgi - orange and cream colored. She was very cute. Also, my mom walked our old dog (died in 2013) around our neighborhood and a cute little corgi mix followed her home. It was a male and I was attached to him instantly. I named him Rusty since he was orange and white. Unfortunately, we couldn't keep him because 1) he fought our dog constantly so we had to keep him separated and 2) we couldn't afford another dog. We adopted him out to a nice guy, though, who really gave him a good home (and kept the name I gave him), but I was devastated and wouldn't speak to my mom for days (that's when I was going through depression really bad). I eventually got over it.

3 of the 4 dogs we've had were from rescues and 1 was from a pet store. The 3 (including the one we have now) have been great dogs - very loveable. I really enjoyed the 2nd dog we had - Lucy - and I miss her since we had to put her down in 2013 due to old age (arthritis, blindness, and deafness). Now, we have Daisy who is so sweet, but can be a handful at times. She was abused (as were the other 2 we had) and is especially wary of men.
 
Cat I'm sorry for how you're feeling. I've been feeling really weak for about a month and a half now. At first I was having fevers and I was real low in iron. I'm still weak after a month on iron pills (don't think they're working, GI says IV Iron an option) I've been going to work but missed two weeks this past month. It just hasn't turned around like I thought it would. Even with my gut flaring up bad I've never been this weak before. It has gotten a bit better in the month but nowhere near any semblance of normal. I can't type for too long my arms get tired even sure feeling. I'm used to going fishing fighting decently big fish on light tackle. I'm not super active or any model of fitness but the things that tire me now are so ridiculous. My left cakf feels almost permanently cramped when I walk.

When I get my biopsy results with my GI I'm gonna see if all this is low iron and nutrient stuff or possibly more. I have had joint pain ever since my gut pain became the worst these past several years, if that doesn't subside when I get my gut to be structure free or less flare-y than I may need to see a rheumotologist. This all sucks to me being a 29 year old man, I've had asthma, eczema, GERD so some health problems, but never felt like everyday I might fall over from walking.

Anyway that's my rant, Cat I hope you get some relief at the ER. Your description just rang true to what I've felt like lately so I got typing a lot lol.
Everyone else I hope you feel better soon, waiting on these biopsy results kind of sucks with no steroids to get this stricture hopefully moving the right direction. Hope no one has to wait much longer for the answers they need.
 
I forgot to mention that I'm seeing the studio apartment today FINALLY! I will be going over there right after work and a resident will give me the key, according to the manager. From what the manager said, a university student and her father looked at it either today or yesterday and expressed interest, but didn't put down the deposit, so 1 unit is still available. The deposit is $250 if you have great credit (which I do) or the equivalent of 1 month's rent if you have good credit ($520). I hope it goes well. I might be signing a lease very soon and that's exciting. :)
 
MissLeopard83 said:
I forgot to mention that I'm seeing the studio apartment today FINALLY! I will be going over there right after work and a resident will give me the key, according to the manager. From what the manager said, a university student and her father looked at it either today or yesterday and expressed interest, but didn't put down the deposit, so 1 unit is still available. The deposit is $250 if you have great credit (which I do) or the equivalent of 1 month's rent if you have good credit ($520). I hope it goes well. I might be signing a lease very soon and that's exciting. :)
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Sending you best wishes
 
MissLeopard, good luck looking at the apartment! And I guess I'm lucky, I've only ever had one dog (my current dog - we had lots of pets growing up but never a dog) and she was clearly never abused by a male (or by anybody). Her previous owners were a lesbian couple so I don't think my dog even was around men very often. And she looooves everyone, particularly people who have treats. :p Corgis are extremely food motivated!

Jcashen, I know that weak feeling very well. I've had a hard time lately even carrying a laundry basket down the stairs to the basement. Walking up one flight of stairs has completely winded me in this flare (even when I don't have a laundry basket). Hopefully we can both get out of these flares soon and get back to feeling stronger and working out more!

I did go to Urgent Care and I got 2 bags of IV fluids, and I feel quite a bit better now. Still not great, but I obviously am hydrated now and don't feel quite so crummy, and I even have a bit of an appetite. My husband decided to call in to work himself so that he could take me to Urgent Care sooner, how sweet of him. :) The Urgent Care doc was nice but not very knowledgeable about IBD. Based on my symptoms, though, it was his opinion that I am indeed flaring and that it's not anything viral/bacterial (I gave the lab my stool samples today so I should find out soon for sure if it's anything bacterial). So yeah, I got fluids and am doing okay-ish now. Going to rest up the rest of the evening and hopefully will still be doing okay tomorrow, my goal is to get back to work tomorrow.
 
My Biopsy results came back, since it was a stricture they could only get to the outside edge of it for the Biopsy. Once he made sure I have never been an Advil taker he said that it was Crohn's Disease. I think since they couldn't biopsy all their usual spots they didnt get the greatest tissue sample. But with the severity of the stricture and what they could look at, it was enough for him to say i had Crohn's.

Bittersweet day, because he then informed me after conuslting with the IBD specialist with Kaiser Permanente they think I need surgery, he does not want to put me on steroids because he said it is hard to get off and could lead complications for the upcoming surgery. They also have to do a CT scan since they could not get past my stricture in my transverse colon. I worry there is more stricturing further along in my system. Since i Have been in pain for several years but have had normal BM in the morning and just pain daily all my DR thought I had IBS and I was a little too easy to convince of this and try a new med.

I am sort of concerned because I always thought surgery was the last option for Crohn's. Also since they couldn't get past it with the scope who knows how much they might end up wanting to remove! He is putting me on 5-ASA just to help inflammation stop for now possibly. But the stricture they biopsied was too much scar tissue that they think it will never heal and needs to be removed. This is my intro to Crohn's disease. I should have pushed my Dr's sooner. That would be my advice to everyone from here on out, and is wonderfully echoed on this forum all the time. Push for other opinions and further testing. I am glad to have found this forum while I was stressing off all the things possibly wrong with me.

Thank you
 
I took a look at the apartment and thought it was very nice all things considered. I've got some serious thinking to do since this is only the first one I've actually seen inside but one of several I've considered. I like the area and I would feel safe there. :)

As for symptoms, I was feeling REALLY fatigued again today around the same time as yesterday (3:30 or 4pm) and thought I was going to fall asleep at my desk. My blood work was normal back in April so I'm not sure what's going on. Also, I had cramps around the stomach area and lower gut. Makes me wonder if it's my small intestines and I hope to get the result of the CTE scan soon. I plan to call the GI doctor's office tomorrow to check.
 
I decided to pass on the apartment I viewed yesterday due to several reasons - lack of on-site or nearby laundromat, lack of on-site maintenance (it's very difficult to even contact the manager since he doesn't always answer his phone, either), and severe lack of storage space. I'm going to look at other options. :)

I called my GI doctor's office today because the bill for my scan posted and they updated my patient portal with the new health record. The clerk said she would pass on the message to the nurse for her to post my results to my patient portal when they come in. I hope to get them later today.

I also called my OB/Gyn's office to schedule an appointment because I started on the generic form of injectable progesterone in March for endometriosis and the last 2 times I've had my period, it has lasted over 3 weeks and I'm very fatigued. I don't think the injection is a good option for me and I would like to try the tablets so I can taper down when my period hits. According to my research, it seems like I have too much progesterone and not enough estrogen to stop the period and have my hormone levels normalize. Once you inject the shot, though, it's in your system for at least 3 months so I don't want to go through this ridiculously long period every time it hits. The nurse said I shouldn't be bleeding this long, either. :(

ETA: I had some really bad nausea this morning when I woke up. I had to keep swallowing water every few minutes because I could feel stuff in my throat. Not sure if it was reflux or something else. I think I may be constipated again since I'm not passing much. :(
 
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Jcashen, congrats and condolences on the diagnosis. I'm presuming they're recommending surgery because the stricture is due to scar tissue? Steroids will heal inflammation, but there's really nothing that can heal scar tissue, it has to be cut out. Hopefully your doctor can clarify for sure but that would be my guess. If it were me, I'd also ask the doctor about medications after the surgery - even if surgery puts you into remission, you still should be on a maintenance med. Maybe do some reading up in the Treatment section of the forum to get a better idea of what your options might be. And feel free to drop in here anytime and let us know how you're doing! Just because you're no longer undiagnosed, doesn't mean we don't care. We're still here for you no matter what. :)
 
Thank you very much, Cat. Indeed the stricture is made up of too much scar tissue. Since they could only get the outside edge they didn't get a great biopsy sample but he still said this was Crohn's although, he did not sound 100%. More like 95% sure sounding to me. Having the surgery will give them some great samples to put under the microscope to I guess confirm.

So I am content with the fact I need surgery, I meet with the surgeon in one week. Got to have the CT scan and hopefully, see exactly how much bowel is involved.
 
Good luck with the surgeon and with the CT! I hope the surgery goes really well and gets you back a good quality of life. Keep us posted on how everything goes.
 
jcashen87 said:
Thank you very much, Cat. Indeed the stricture is made up of too much scar tissue. Since they could only get the outside edge they didn't get a great biopsy sample but he still said this was Crohn's although, he did not sound 100%. More like 95% sure sounding to me. Having the surgery will give them some great samples to put under the microscope to I guess confirm.

So I am content with the fact I need surgery, I meet with the surgeon in one week. Got to have the CT scan and hopefully, see exactly how much bowel is involved.
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Wishing you the best.
 
I got the results back from the CTE and they were posted online. It looks like IBD can be officially ruled out as nothing was noted in the scan to suggest it - no thickening, no inflammation, etc. The radiologist did, however, note that I had cysts in both my kidneys. My paternal grandmother once told me that she has polycystic kidney disease and it sounds like I have the same thing which is not surprising at all considering we share so many sensitivities and disorders. Anyway, I guess I don't really need to continue with the GI doctor if it is IBS, but it now appears I need to see a urologist. According to Mayo Clinic, PKD causes high blood pressure, pain in the abdomen and lower back (both of which I have), fatigue, and a swollen abdomen. All the symptoms make sense, but I didn't attribute to a urinary disorder. I have been noticing that my blood pressure has been on the rise lately - especially in the evenings and when they take my BP at doctor's offices (I thought it was "white coat syndrome" but happens all the time).

Wow, so weird to find out that I have another type of disorder entirely. This also happened with the ultrasound I had - they found out I have a fatty liver, too.
 
So after a little over a week of feeling absolutely great - symptoms completely controlled by meds, feeling fine able to eat almost normally - today everything just came back like *that*. I don't know what the hell happens when it's like this. Could it be that my sliding hernia is just in different positions at different times? In any case, I'm in terrible pain atm, I can't even drink water without pain. It's pretty miserable, I'm taking some extra Zantac to try and keep it under control but it's not going great.

I don't know if it could be that I relax and eat more adventurously when I'm feeling better and then suddenly it's like the system just can't take it anymore. But it's strange, when I'm feeling good I can eat pretty much anything and nothing happens. I had COFFEE last week and I was fine, nothing happened, it was 5 days ago and now today out of the blue when I hadn't done anything in particular, just ate food (nothing triggery at all) - it's back.
 
MissLeopard, I'm glad to hear you got some answers! What type of treatment is available for polycystic kidneys? I hadn't heard of that illness before so I hope there are good ways to treat it.

Izzie, that's how I am in this flare. Last week Weds - Fri I started feeling better and could exercise again and was starting to eat more normally. Then on Saturday I felt significantly worse and it's just been going downhill from there. Is it because of something I ate on Friday, or is it because I went to the gym? That doesn't seem to explain 5 days of worsening symptoms. Sometimes things just flare up for no obvious reason, that's all I can think anyway. I don't know but I'm in the same boat! Hopefully we can both turn it around soon and start feeling better again.
 
Finally been scheduled for scopes in September....been a long wait. Seems weird to be kinda excited about finally getting them done but I though you would all understand here!
 
Cat-a-Tonic said:
MissLeopard, I'm glad to hear you got some answers! What type of treatment is available for polycystic kidneys? I hadn't heard of that illness before so I hope there are good ways to treat it.
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I'm not really familiar with PKD, so I have to do some more research and ask my grandmother questions about how she manages hers. It could be simple cysts, but I would not be surprised if it is PKD as I have Polycystic Ovarian Syndrome and cysts run rampant in our family. This is what it says on Mayo Clinic's website:

Treatments include medication to control blood pressure, pain relievers, and cyst removal.

Anyway, I wound up in the ER tonight due to some very sharp right-sided lower back pain while driving home from work. It started out crampy and dull, but then got progressively worse, to the point where it was taking my breath away. I called my mom and she recommended I head to the nearest ER but I wanted to go to urgent care. She was worried it was a kidney stone so wasn't sure if they could handle that in UC. Anyway, it took about an hour to get thru triage and waiting and then 4.5 hours in the actual patient room. In triage, my BP was at 162/79 due to pain. They drew blood and took a urine sample and couldn't find any evidence of a kidney stone or UTI, so they sent me home with orders to call my primary care doctor tomorrow for a follow-up. Very frustrating because I'm very tired, as is my mom, since we sat there and waited for a very long time. My back is very sore from the uncomfortable gurney and my left arm feels like a pin cushion since the nurse drew blood and also had a hep-lock in my arm (those are TERRIBLE) for instant IV access.

I'm supposed to be at work tomorrow morning at 8:30 with a 6am wake-up time. I'm thinking of asking my boss if I can come in late and stay late (even 1 hour would help) because of how tired I am. My mom and I just got home a little while ago. :(
 
happy said:
MissLeopard83,
You may wish to seek out an opinion from a liver specialist for some of your abdominal pain/back pain/digestive issues. If you do have polycystic kidney disease, you may also have cysts developing in your liver.
Here is more info about polycystic kidney disease: http://endpkd.ca/learn/learn-about-adpkd/just-diagnosed/
May you soon be feeling much better.
Click to expand...

Thanks for the thought. I'll mention it to my PCD when I see her tomorrow since I have a follow-up due to an ER visit last night for lower right-sided back pain. I had an ultrasound done at the beginning of this whole mess to check for gallstones and the radiologist noted that I have a fatty liver, but it makes me wonder if it's not fat, but cysts as that would make more sense to me. A lot of the GI doctors around this area also have experience in liver disorders, including the GI doctor I was seeing.
 
Ds has bilateral renal cysts
They were found at age 7 on his cte for crohns.
I would recommend a nephrologist they handle adpkd
There are two genetic types of adpkd both are genetic
One just basically raises blood pressure.
The other causes renal failure
There is no treatment for adpkd
Only treatment of symptoms
It is monitored by kidney function and ultrasound regularly .
It is recommended that all family members that are adults get ultrasounds
Most can be dx with adpkd after the age of 30 by ultrasound
 
My PCD sent an email back to me stating that the CT showed benign renal cysts and said no further intervention is needed at this time. However, I sent the email yesterday before I went to the ER, so I'm keeping my appointment tomorrow morning. Something is definitely going on. Usually, cysts don't give you symptoms unless they are getting bigger or obstructing the flow of urine. I'm wondering if she's going to send me for another abdominal ultrasound to check further down. The only other thing I can think it would be is an ovarian cyst since I have PCOS. :(
 
How many cysts were noted ?
In one kidney or both?
Adpkd has many many cysts.
Most people have cysts In at least one of their kidneys
These are known as simple cysts and are typically benign (there are different types so a nephrologist is best at tell you the not so good kind depending on chambers etc..,)
The older you get the more likely you are to have cysts
The more cysts you have the more likely it is adpkd.

Hope the appt is useful
 
Today, I went to work late and had stomach pain all day long, especially right after lunch. The problem, I believe, stems from the fact that I did not have dinner last night since I was in the ER from 6pm to almost 12am and I ate a GF bagel when I got home (not enough). Right after lunch, I got this HORRIBLE nausea again and my stomach really started to hurt. I couldn't talk to my friends because I felt so bad. The painful spot is to the left of my belly button but it is inside and doesn't hurt on palpation; there's no lump there, either. I started feeling really hot when the pain started at lunch, but I didn't have a thermometer so I don't know if I was running a fever. When I got back to my office, I took some Kaopectate (1 tablet since I didn't want to get backed up; I wanted the pain to stop). I'm going to check with my doctor about this tomorrow and see if I should go back for a gastric emptying test with my GI doctor before my insurance switches over. :(
 
MissLeopard83 said:
Today, I went to work late and had stomach pain all day long, especially right after lunch. The problem, I believe, stems from the fact that I did not have dinner last night since I was in the ER from 6pm to almost 12am and I ate a GF bagel when I got home (not enough). Right after lunch, I got this HORRIBLE nausea again and my stomach really started to hurt. I couldn't talk to my friends because I felt so bad. The painful spot is to the left of my belly button but it is inside and doesn't hurt on palpation; there's no lump there, either. I started feeling really hot when the pain started at lunch, but I didn't have a thermometer so I don't know if I was running a fever. When I got back to my office, I took some Kaopectate (1 tablet since I didn't want to get backed up; I wanted the pain to stop). I'm going to check with my doctor about this tomorrow and see if I should go back for a gastric emptying test with my GI doctor before my insurance switches over. :(
Click to expand...

Has anyone ever mentioned a hiatal hernia?
 
Jsashen, you have my congratulations and condolences as well. When my hubby was initially diagnosed, it was thru a CT scan at the ER, but it left no doubt. They should have caught it earlier in a scope for similar reasons to you, but that first GI was incompetent. Doug also needed surgery, but that surgery literally saved his life, and provided oh-so-much relief after.

ShellK, it doesn't seem unusual to me at all to be excited to have scopes done. It is very hard to not know what is going on. Good luck, and keep us posted!
And oh my, Miss Leopard, you have a lot going on. I'm sorry the apartment didn't work out for you, but at least you have a good enough head on your shoulders to realize what needs were lacking in that situation.
I think I learn more on this thread than anywhere, and right now some of your similarities, Miss L, are scaring me! Long story shortened, I also had PCOS for years, just last year had both ovaries taken out (even several years post hysterectomy) due to "suspicious" growths (not the fluid filled cycts, but turned out benign thankfully), have had high blood pressure for years, have complained of pain in kidney areas for years, had way too many UTIs, and recently found out from a patient portal that I have a calcification on my right kidney (the GI doc that ran a CT scan a few months back didn't deem it important enough to tell me, but did tell me about my severe arthritis, which of course I was experiencing so knew I had, but that was the least of my concerns as I couldn't eat at the time). After reading more about PKD it scared me further because some of the other symptoms besides reoccurring UTIs, and liver problems (I too have fatty liver disease), I've also had abnormal kidney function tests that showed me in kidney failure stages, but by the time I got to the urologist, back to almost normal. Weird, huh? I almost always have at least microscopic hematurmia, another symptom (but the urologist said some people have "benign" hematurmia for unknown reasons), but with my infections I have visible blood in urine often. I also found out from reading my patient portal (not from the doctor) that I have an umbilical hernia (but the doc who read the CT and wrote the report wasn't concerned about it), which is also often associated with PKD. So are diverticulosis pouches which I knew I had (thankfully, it's not diverticulitis. I watched my sister go thru that, and she had to be lifeflighted by helicopter from her rural hospital.) I'm wondering if I need to worry about PKD too, but don't know of any family history... But probably just worrying too much because it's the middle of the night.
I did want to mention, on a lighter note and as RonRouch knows from elsewhere on the forum, that I have a Boston Terrier that I love to pieces. And tho my dog Allie is not a certified service dog like yours Ron, (she lacks discipline and training, will never be certified), she sometimes alerts before I've had a seizure. And even tho a "terrier", Bostons are known to be quiet, not yappy dogs. I can't stand yappy dogs either. BTs are very unique in many ways. She is sometimes a pain in the patoodie with wanting out and in (no doggy door) but a good dog nonetheless. We were lucky we got her, and our BT we had before we got her, (with some overlap), both shelter dogs, very uncommon to find in shelters. And both very good dogs.
And since I'm rambling and it's the middle of the night, and I've had about three or four trips to the bathroom (ugh!), I better try to get back to sleep.
Hope all are as well as can be, and Izzie and those that need it, that you feel better. I'm glad some of you are finding answers.
Collage%202016-08-19%2002_02_33-1_zps0zawdcjp.jpg
 
SandyUte said:
Jsashen, you have my congratulations and condolences as well. When my hubby was initially diagnosed, it was thru a CT scan at the ER, but it left no doubt. They should have caught it earlier in a scope for similar reasons to you, but that first GI was incompetent. Doug also needed surgery, but that surgery literally saved his life, and provided oh-so-much relief after.

ShellK, it doesn't seem unusual to me at all to be excited to have scopes done. It is very hard to not know what is going on. Good luck, and keep us posted!
And oh my, Miss Leopard, you have a lot going on. I'm sorry the apartment didn't work out for you, but at least you have a good enough head on your shoulders to realize what needs were lacking in that situation.
I think I learn more on this thread than anywhere, and right now some of your similarities, Miss L, are scaring me! Long story shortened, I also had PCOS for years, just last year had both ovaries taken out (even several years post hysterectomy) due to "suspicious" growths (not the fluid filled cycts, but turned out benign thankfully), have had high blood pressure for years, have complained of pain in kidney areas for years, had way too many UTIs, and recently found out from a patient portal that I have a calcification on my right kidney (the GI doc that ran a CT scan a few months back didn't deem it important enough to tell me, but did tell me about my severe arthritis, which of course I was experiencing so knew I had, but that was the least of my concerns as I couldn't eat at the time). After reading more about PKD it scared me further because some of the other symptoms besides reoccurring UTIs, and liver problems (I too have fatty liver disease), I've also had abnormal kidney function tests that showed me in kidney failure stages, but by the time I got to the urologist, back to almost normal. Weird, huh? I almost always have at least microscopic hematurmia, another symptom (but the urologist said some people have "benign" hematurmia for unknown reasons), but with my infections I have visible blood in urine often. I also found out from reading my patient portal (not from the doctor) that I have an umbilical hernia (but the doc who read the CT and wrote the report wasn't concerned about it), which is also often associated with PKD. So are diverticulosis pouches which I knew I had (thankfully, it's not diverticulitis. I watched my sister go thru that, and she had to be lifeflighted by helicopter from her rural hospital.) I'm wondering if I need to worry about PKD too, but don't know of any family history... But probably just worrying too much because it's the middle of the night.
I did want to mention, on a lighter note and as RonRouch knows from elsewhere on the forum, that I have a Boston Terrier that I love to pieces. And tho my dog Allie is not a certified service dog like yours Ron, (she lacks discipline and training, will never be certified), she sometimes alerts before I've had a seizure. And even tho a "terrier", Bostons are known to be quiet, not yappy dogs. I can't stand yappy dogs either. BTs are very unique in many ways. She is sometimes a pain in the patoodie with wanting out and in (no doggy door) but a good dog nonetheless. We were lucky we got her, and our BT we had before we got her, (with some overlap), both shelter dogs, very uncommon to find in shelters. And both very good dogs.
And since I'm rambling and it's the middle of the night, and I've had about three or four trips to the bathroom (ugh!), I better try to get back to sleep.
Hope all are as well as can be, and Izzie and those that need it, that you feel better. I'm glad some of you are finding answers.
Collage%202016-08-19%2002_02_33-1_zps0zawdcjp.jpg
Click to expand...
Sandy, I also have an umbilical hernia. I have been up most of the night with numerous bathroom visits. I should have had chicken noodle soup with fusil noodles.
 
I'm so frustrated. Still not doing well, 4 weeks into this flare. I had to call in sick to work yet again (I've only been to work 1 day this week). Still having urgent watery d, nausea, no appetite, weakness, fatigue, crampy pain, etc. I don't think the steroids are doing anything. Haven't gotten my stool test results back yet either (will be calling my GI's nurse at 8 AM when their office opens to see if she can tell me anything). I see my GI on Monday, but in the meantime I'm just so incredibly frustrated. I just hate feeling this way, I'm getting worse instead of better and I don't know why. I've never had Entocort fail me like this in the past so maybe it is an infection? I really just need those stool test results, although I'm going to cry if they don't show anything. If it is a flare, then why isn't Entocort working? It's just scary not knowing what's going on or why. I just want to feel better!
 
Thanks Ron. I think I'm going to end up at the ER or urgent care again today. I can tell I'm dehydrated and now I'm also sort of light-headed. Not good at all. My GI's office opens in 17 minutes so I'm going to call the nurse then (my GI is not in the clinic all this week).
 
Cat hope you start getting improvement soon, at least some relief from your current acute symptoms and that you don't need the ER today.

I'm off to try and sleep as its 11pm here. I've been feeling nauseous after lunch the last few days which is new for me. Tonight the pesky migraine is hitting too so sleep it is.
 
Well, the nurse just called me back with my stool sample results. Everything completely normal. So I don't have any infection. My fecal calprotectin was also within the normal range. The nurse did recommend that I go to get more IV fluids today and then we'll see what my GI says on Monday.

Ugh. Not that I wanted an infection, but at least that'd explain why the steroids aren't working. I guess I'll drag my sorry self over to urgent care soon for IV fluids. That's the only thing I can do until Monday afternoon. Currently crying and trying to pull myself together. I *hate* this stupid illness so much!
 
I'm so sorry Cat. I hate feeling so unwell with unanswered questions. I hope you can find relief today. Take care of yourself, unfortunately as we all know work has to be put off sometimes. Get better soon!
 
Cat-a-tonic
Does the diarrhea stop if you stop all food and go npo ?
Ds had something similar April /May of this year all looked great on tests but still tons of watery D .
Only npo stopped it and finally EEN on neocate Jr
 
SandyUte said:
And oh my, Miss Leopard, you have a lot going on. I'm sorry the apartment didn't work out for you, but at least you have a good enough head on your shoulders to realize what needs were lacking in that situation.
I think I learn more on this thread than anywhere, and right now some of your similarities, Miss L, are scaring me! Long story shortened, I also had PCOS for years, just last year had both ovaries taken out (even several years post hysterectomy) due to "suspicious" growths (not the fluid filled cycts, but turned out benign thankfully), have had high blood pressure for years, have complained of pain in kidney areas for years, had way too many UTIs, and recently found out from a patient portal that I have a calcification on my right kidney (the GI doc that ran a CT scan a few months back didn't deem it important enough to tell me, but did tell me about my severe arthritis, which of course I was experiencing so knew I had, but that was the least of my concerns as I couldn't eat at the time). After reading more about PKD it scared me further because some of the other symptoms besides reoccurring UTIs, and liver problems (I too have fatty liver disease), I've also had abnormal kidney function tests that showed me in kidney failure stages, but by the time I got to the urologist, back to almost normal. Weird, huh? I almost always have at least microscopic hematurmia, another symptom (but the urologist said some people have "benign" hematurmia for unknown reasons), but with my infections I have visible blood in urine often. I also found out from reading my patient portal (not from the doctor) that I have an umbilical hernia (but the doc who read the CT and wrote the report wasn't concerned about it), which is also often associated with PKD. So are diverticulosis pouches which I knew I had (thankfully, it's not diverticulitis. I watched my sister go thru that, and she had to be lifeflighted by helicopter from her rural hospital.) I'm wondering if I need to worry about PKD too, but don't know of any family history... But probably just worrying too much because it's the middle of the night.
I did want to mention, on a lighter note and as RonRouch knows from elsewhere on the forum, that I have a Boston Terrier that I love to pieces. And tho my dog Allie is not a certified service dog like yours Ron, (she lacks discipline and training, will never be certified), she sometimes alerts before I've had a seizure. And even tho a "terrier", Bostons are known to be quiet, not yappy dogs. I can't stand yappy dogs either. BTs are very unique in many ways. She is sometimes a pain in the patoodie with wanting out and in (no doggy door) but a good dog nonetheless. We were lucky we got her, and our BT we had before we got her, (with some overlap), both shelter dogs, very uncommon to find in shelters. And both very good dogs.
And since I'm rambling and it's the middle of the night, and I've had about three or four trips to the bathroom (ugh!), I better try to get back to sleep.
Click to expand...

Yeah, it has been a very rough week this week. I'm so ready for it to be over and I'm praying that the weekend is much better. I went to my GP today at 8am and she doesn't think the pain has anything to do with my kidneys because the radiology report mentioned that there is one on both kidneys and they are no bigger than 3mm. Her idea was that it is an ovarian cyst since I have PCOS and I should see my GYN doc - I already had an appointment scheduled for next Thursday at 3:30pm. She read the results and noted that everything was normal - I'm not anemic and my electrolytes are normal, too.

I talked to my mom after my appointment to tell her the news and I just really hate that I still don't know what's wrong with me. My body is giving mixed signals and no doctor has been able to determine what is wrong because the symptoms are not adding up. That makes me feel terrible because then doctors think I'm drug-seeking (which I absolutely am NOT; I don't ever want to be on pain meds if there is another option), or I'm making up my symptoms and/or it's all in my head. My pain is real and I really wish I had some real answers as to what is going on. I can't get treatment unless I have a diagnosis. :(

On a much lighter note, I used to always want a Boston Terrier - for some reason I am attracted to black and white cats and dogs (my mom pointed that out). At certain times, I wanted a Boston Terrier, Border Collie, Tuxedo Cat, etc. Now, I really want a Golden Retriever (I saw one on the way to the doctor's office this morning and just fell in love all over again; they are such great dogs). :)
 
I spent 4 hours in the ER. Got 2 bags of fluid and a bunch of bloodwork done. Of course my bloodwork was almost completely normal - the only one that wasn't was that my potassium was pretty low, so they gave me some potassium as well.

MLP, I've been so weak and losing weight so I haven't done NPO yet - I make myself eat something small each day (today so far I've had a banana). I don't think I want to try NPO because I don't want to lose further weight if I can help it. I am going to ask my GI about EN, though. That sounds like something worth trying.

MissLeopard, I love goldens! That's my 2nd favorite breed after corgis. And I love tuxedo cats as well. Not sure if my cat is technically a tuxedo - she's like 90% black with a few small white patches here and there. Black cats and tuxedo cats are awesome. :)
 
SandyUte said:
Jsashen, you have my congratulations and condolences as well. When my hubby was initially diagnosed, it was thru a CT scan at the ER, but it left no doubt. They should have caught it earlier in a scope for similar reasons to you, but that first GI was incompetent. Doug also needed surgery, but that surgery literally saved his life, and provided oh-so-much relief after.

ShellK, it doesn't seem unusual to me at all to be excited to have scopes done. It is very hard to not know what is going on. Good luck, and keep us posted!
And oh my, Miss Leopard, you have a lot going on. I'm sorry the apartment didn't work out for you, but at least you have a good enough head on your shoulders to realize what needs were lacking in that situation.
I think I learn more on this thread than anywhere, and right now some of your similarities, Miss L, are scaring me! Long story shortened, I also had PCOS for years, just last year had both ovaries taken out (even several years post hysterectomy) due to "suspicious" growths (not the fluid filled cycts, but turned out benign thankfully), have had high blood pressure for years, have complained of pain in kidney areas for years, had way too many UTIs, and recently found out from a patient portal that I have a calcification on my right kidney (the GI doc that ran a CT scan a few months back didn't deem it important enough to tell me, but did tell me about my severe arthritis, which of course I was experiencing so knew I had, but that was the least of my concerns as I couldn't eat at the time). After reading more about PKD it scared me further because some of the other symptoms besides reoccurring UTIs, and liver problems (I too have fatty liver disease), I've also had abnormal kidney function tests that showed me in kidney failure stages, but by the time I got to the urologist, back to almost normal. Weird, huh? I almost always have at least microscopic hematurmia, another symptom (but the urologist said some people have "benign" hematurmia for unknown reasons), but with my infections I have visible blood in urine often. I also found out from reading my patient portal (not from the doctor) that I have an umbilical hernia (but the doc who read the CT and wrote the report wasn't concerned about it), which is also often associated with PKD. So are diverticulosis pouches which I knew I had (thankfully, it's not diverticulitis. I watched my sister go thru that, and she had to be lifeflighted by helicopter from her rural hospital.) I'm wondering if I need to worry about PKD too, but don't know of any family history... But probably just worrying too much because it's the middle of the night.
I did want to mention, on a lighter note and as RonRouch knows from elsewhere on the forum, that I have a Boston Terrier that I love to pieces. And tho my dog Allie is not a certified service dog like yours Ron, (she lacks discipline and training, will never be certified), she sometimes alerts before I've had a seizure. And even tho a "terrier", Bostons are known to be quiet, not yappy dogs. I can't stand yappy dogs either. BTs are very unique in many ways. She is sometimes a pain in the patoodie with wanting out and in (no doggy door) but a good dog nonetheless. We were lucky we got her, and our BT we had before we got her, (with some overlap), both shelter dogs, very uncommon to find in shelters. And both very good dogs.
And since I'm rambling and it's the middle of the night, and I've had about three or four trips to the bathroom (ugh!), I better try to get back to sleep.
Hope all are as well as can be, and Izzie and those that need it, that you feel better. I'm glad some of you are finding answers.
Collage%202016-08-19%2002_02_33-1_zps0zawdcjp.jpg
Click to expand...
I have heard that they have service dogs that can sense a half hour before Crohns patients need to go the bathroom.
 
It is amazing what dogs can sense, Ron, isn't it? I suppose that could help if one is always finding oneself in an urgent situation, give more time to find a bathroom. (I know I could use that at times.)
I also like golden retrievers, actually love their personalities, but I'm afraid of having a dog on the larger side, afraid I wouldn't be able to handle it physically. I know they also set my asthma off more than I would be comfortable with, so afraid it is not meant to be. Ironically, I've always been fascinated by corgis, ever since our (former that we still claim) foster son worked at a ranch that had a couple corgis. It was fun to watch them work, and they were friendly also.
Cat, I really hope you feel better soon, you've been thru too much. I know we can all agree there is nothing worse than knowing you are not well and having all the tests come out normal. Low potassium is nothing to sneeze at, though, it can cause diarrhea in itself as well as nausea and bloating, and muscle cramps and dehydration. I hope your treatment has you starting to feel better. Hugs.
 
Unfortunately I'm already feeling worse. My body has decided that tonight is one of those nights that it's not going to allow me to sleep without a fight. I tried going to sleep but it just didn't happen, the nausea & reflux & cramps all teamed up to get me out of bed. So I took a zofran & a bentyl & a ranitidine and am just trying to ride this out. Still having a lot of diarrhea as well, like an inordinate amount compared to how little I've been eating. Today I ate most of a banana for lunch, and an english muffin for dinner. That's literally it. But I've been to the bathroom probably 20 times.

I'm at the point where I'm ready to cry and beg my GI for help when I see him on Monday. I just want to feel better. I'm also ready to take MLP's advice and not eat anything for a bit. If a banana and an english muffin sent me to the bathroom this many times, well I'm probably not actually absorbing any of those calories anyway so I may as well only drink liquids and not eat anything. I think I'm going to try that tomorrow because I'm just so done with this. Out of the last month, there have been 3 days where I felt somewhat like a human. I was still having diarrhea those days, but not the crazy nausea and cramping and just that indescribable feeling of "everything is wrong". Someone else on the forum once described what goes on in their gut as "the swirling darkness." And that's a great phrase, it feels like that's definitely what I've had going on. Some of the things we experience have names, like nausea and diarrhea. But there's that feeling that can't be quantified, the feeling of oh no oh no oh no why is this happening. I mean, I can deal with diarrhea. I can deal with nausea. But the swirling darkness, that feeling of doom that happens on a now-daily basis, that's what I can't deal with.

And I think the ER doctor noticed that - she wrote me a prescription for a few tablets of a mild dose of an anti-anxiety med (ativan I think?). I haven't picked it up yet, but I think I'm going to try it the next time the swirling darkness really gets to me like this. Maybe it'll help. Maybe not, but I'm crying every day so it's worth a shot.
 
Hi Cat,
You may wish to try a ready-made drink, Orgain Vegan Nutritional Shake: http://orgain.com/products/organic-vegan-nutritional-shakes/

The shakes have most of the nutrients that you need with a good amount of protein. Make sure it is the vegan kind as the others have milk protein in them and that may make the diarrhea worse at this point.

When I was so ill, I could not find a non-dairy ready-made drink, but if these had been available I would have tried them before I went on EEN. Ensure didn't help because of the milk protein.

I did not have abnormal blood work until I was many months in to my flare and I had lost 60 pounds. Even then I only had mild anemia and iron deficiency. Much later some vitamin deficiencies showed up. This was in spite of ischemia in my small blood vessels in my eyes that caused 'cotton wool spots'. So keep after the doctor. Some of us don't have the blood work that shows the horrible state we are in.

That being said--I would repeat the stool samples and make sure they test for parasites as well as c. difficile. It may be more prevalent in your grandma's new home.

May you soon be feeling better.
 
Thanks, happy! I am lactose intolerant but I can do some Ensure without issue, although I try to avoid it because I want to avoid carrageenan. Vanilla Ensure gives me bad diarrhea but the chocolate flavor always sat pretty well with me. And now there's that Ensure Clear stuff, I believe that doesn't have carrageenan. So that might be an option for me too.

Wow, 60 lbs! That's a terrifying amount of weight loss. I'm a 5'8" woman, I was 146 lbs before this flare started and I'm at 137 lbs now. I don't have a lot of weight that I can afford to lose without becoming underweight again. The first year that I was ill, at my lowest my weight dropped down to about 115 lbs and I was definitely underweight then. I looked borderline frightening, my thighs looked like toothpicks. I don't want to get to that point again.

I will definitely keep after my doctor. The good news is, he takes me seriously, particularly when I've had unintentional weight loss. Even if I lose a couple lbs, he'd be concerned about that. Losing 9 lbs in a month while on steroids, I'm sure he'll take me very seriously and we'll come up with a plan of action to get me feeling better. And I will make sure that we repeat some of the stool tests if I don't improve.
 
Thank you so much for your support, guys. It really means a lot to me. Don't worry too much about me, I'm just a champion complainer when I'm not doing well. I've been in remission in the past though so I know it's possible, I just have to fight harder to get there this time. I'm trying to focus on remission, I know I can get back there.

I just want to say, Ensure Clear is kind of gross. :p I'm trying to stick to a liquids-only diet today and so far I'm succeeding at that (it's not too hard to stick to liquids only when you don't have any appetite). I'm not feeling any worse and I'm hopeful that I might start feeling a bit better on liquids only.

I even ventured out of the house today. I've been wanting a wingback chair for my sewing room - currently I have an old, uncomfortable computer chair that I've been using as my sewing chair. I thought a wingback chair in my sewing room would be classy and cozy as well as much more comfortable for sewing. Hubby took me to a store today to look at some chairs, we were planning on looking at a dark grey wingback chair that we had seen on the store's website. But I didn't love the grey chair in person, it wasn't very comfortable. Then I glanced at the other chairs in the store - and there was a bright fuchsia pink wingback chair that was on sale. I sat in that one and liked it much better, really comfortable and it just felt right. Hubby also sat in it and agreed it's much better than the grey one. So, he bought me the bright pink chair for my sewing room. :p I love it! I'm going to be so cozy comfy when I sew now.
 
Yes, Ron, that's correct - I didn't see carrageenan listed anywhere in the ingredients. There's also a powdered Ensure that I'm going to try later today, which also didn't have carrageenan listed.
 
Yesterday, I did a bunch of research after I met with my GP and it seems an ovarian cyst is very likely. It's possible that it ruptured and that's why I feel better. My mom has had them before, but she always felt them in her pelvic region and didn't know you could feel them in your lower back. If the cyst ruptures, the fluid can irritate abdominal organs, which might explain why I had left periumbilical pain and intense nausea. It could also be that the stomach pain is unrelated and a separate GI issue. I can't wait to see what my GYN doctor says on Thursday. I'm really hoping he can give me something that will help stop the crazy on-again, off-again bleeding I've been having with the progesterone shot. The ER doctor said it was normal to have spotting, but this is more than spotting - it's like full-blown menstrual bleeding. The bloating has been relentless and I've had a lot of abdominal cramps over the past week (both also symptoms of an ovarian cyst). Maybe this visit will finally lead to the answers I've been waiting for, but I'm not holding my breath. I'm definitely getting off the shot as it seems artificial hormones just do not work with my body and I'm tired of these crazy side effects. The only thing that seemed to work and had minimal side effects is not being made any more - Ortho-Evra. It really helped with the PCOS and endometriosis - I think it was good because it was transdermal and time-released rather than oral like the pill. Unfortunately, it was pulled from the market and the newer patch is not as well-liked by Ortho-Evra users - they are claiming it causes side effects similar to the pill, so I don't know what to do. I doubt my GYN will consider using bioidentical hormones because he has never mentioned them. I'm pretty sure they would work better for me than artificial stuff.

On a much lighter note, my mom and I went apartment hunting again today and I found some townhouses that are in my budget that I LOVE but they won't be available until December. My mom reminded me that's only 3.5 months away, but I'm 33 and so ready to move out, so 3.5 months seems like an eternity. It's in a great area and has SO many features that are not usually offered like a washer/dryer in each unit (one of those stacked kind). There is no application fee, security deposit, or pet deposit (you do have to pay $30 pet rent every month). It's all two-story units so no worries about an upstairs neighbor. They are renovating them under new management, that's why they have the long wait. They also have complexes in other cities that are well-maintained, so this might be THE one. :)
 
MissLeopard, I'm glad you're getting things figured out, but that's frustrating that the ideal treatment isn't available any longer. And that's great that you may have found a place to move to! 3.5 months sounds like a long time, but I bet the time will fly by. And that will give you time to pack, organize, toss things you don't need, etc. I'm 36 and I wouldn't want to live with my parents any longer than necessary, either, but 3.5 months isn't that long. You can do it! Just think about the awesome townhouse and cool pet(s) that you'll have once you move. Use this 3.5 months to think up pet names and pick out cute leashes and collars and stuff! :)

I'm actually starting to feel a bit better. The liquid diet so far is going fine - I got some Ensure powder that you mix with water, and it gave me some cramps, but not too bad. Any & all solid foods have been giving me bad cramps, so I was pretty prepared for the Ensure to give me cramps as well. I haven't had hardly any bathroom trips since starting the liquid diet (well, I have to urinate of course because I'm having more fluids than usual, but that's a good thing as I feel like I'm finally staying properly hydrated). I'm encouraged! I think I can do this!
 
Cat-a-Tonic said:
MissLeopard, I'm glad you're getting things figured out, but that's frustrating that the ideal treatment isn't available any longer. And that's great that you may have found a place to move to! 3.5 months sounds like a long time, but I bet the time will fly by. And that will give you time to pack, organize, toss things you don't need, etc. I'm 36 and I wouldn't want to live with my parents any longer than necessary, either, but 3.5 months isn't that long. You can do it! Just think about the awesome townhouse and cool pet(s) that you'll have once you move. Use this 3.5 months to think up pet names and pick out cute leashes and collars and stuff! :)
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I may have to wait until I get another raise next July before getting a pet because the rent is at my maximum of $650 and the pet rent makes it $680. I meet the income requirements of $12.49 an hour (I make $13.45 an hour), so I will have to see what my bills are like before getting a pet so I can be sure I have enough. The hope is that I can find a rescue dog less than 40 lbs (40 is the limit placed by management which is bigger than the studio I was looking at; they had 25). I want to find a rescue who is young, but also not a puppy since I work all day and don't want to have come home to find out the dog was mischievous while I was out. Our current dog was 1-2 years old when we got her and the one before that was 6 months. Our current dog was already potty-trained and didn't get into anything. The worst thing she's done is get a hold of some pencils and chew them to bits, but that's it. The former one was already crate-trained and house-trained. :)
 
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I agree, that's definitely the way to do it with dogs. Our dog was 2 when we got her, already house trained, crate trained, and knew a lot of commands and tricks. We didn't have do deal with any puppy craziness. It was perfect! I don't think I could deal with a puppy, that just sounds like too much for me. Getting a dog that's still young but already trained is the best.
 
Cat-a-Tonic said:
I agree, that's definitely the way to do it with dogs. Our dog was 2 when we got her, already house trained, crate trained, and knew a lot of commands and tricks. We didn't have do deal with any puppy craziness. It was perfect! I don't think I could deal with a puppy, that just sounds like too much for me. Getting a dog that's still young but already trained is the best.
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Yeah, it's great having a dog that is completely trained already. The only con I can think of is bad habits are hard to break. Our dog was in a foster home with 3 others (including her sister) and we learned quickly that she was on a leash with all 3 of them and the lead dog must have pulled the foster mom on a walk because our dog loves to pull people. The foster mom must also have let the dogs bark at everything because our dog HATES the mailman AND package delivery folk. The foster mom said that our dog was part Rottweiler and part hound (she didn't know what kind). Our dog is very muscular and thin so I think she is part Doberman instead because she shares many of the characteristics.

Our other dog was in a rescue organization and her foster dad made sure that she was taken care of. We realized that she must have been a bait dog for dog fighting because of how timid she was. The rescuer found her on a very busy street, in the rain, full of mange and underweight. By the time she was put up for adoption, her fur grew back and she looked healthy. She absolutely did not like Hispanic people - especially when they spoke Spanish. That was the only time we saw her get ugly - when we had a garage sale and some Hispanic people stopped and she started growling. We suspect that the original owners were Hispanics and abused her. She lived to be 16 years old. We ended up putting her to sleep because of her terrible arthritis (she had hooks all over her spine and her back nerves were numb so she constantly had accidents) and the fact that she was mostly blind and her hearing was progressively getting worse. It was the hardest decision we ever made, but is not a choice we regret because her quality of life was very poor. She could not move without assistance at the end and that was difficult to handle watching her go downhill. She was the best dog we ever had and I miss her so much.

We waited 1 month before we finally got another dog. I found our dog's sister listed on Petfinder and my mom called the foster mom but we found out that the sister had too much energy and required a grain-free diet due to allergies. Then, the foster mom told us that she had our dog as well who was a little less high maintenance, so we went to visit her. The foster parents lived in a country area about an hour away from where we live. Our dog went off when we got there - she would not approach us and constantly barked. The foster mom said we should sit down and we discussed the dog's care while our dog calmed down. It took about 45 minutes - the only reason why she approached us is because the foster mom let the alpha dog out of the other room. The alpha dog liked us, so our dog finally warmed up to us - albeit slow. She didn't like my dad at all at first, and right when we were about to leave without filling out the adoption application, my dad was sitting down and our dog put her paws up on his lap and showed affection. That was it for us and we went through the entire process. We've had her since Aug 2013. :)
 
Ugh. I'm doing badly again today. The ensure apparently gave me even more diarrhea. I'm just going to have water for now and try again on the ensure later today. I've lost 2 more lbs since yesterday (down 11 lbs so far in this flare). I think my hair is starting to fall out again (it does that sometimes in response to a flare or to steroids). I'm just so done with this and having a major pity party for myself today.

Tomorrow I see my GI and I am literally counting the minutes. My appointment isn't until the afternoon so it's going to be a looong day while I wait for 3:40 to come along.
 
I was at a family function yesterday and had some wine with dinner and I don't know if there was some interaction with medications or what but I had a pretty bad reaction - basically got completely wasted on two glasses. It was pretty embarrassing, I still feel terrible - physically and mentally. And it caused pretty bad D all of today along with a really scary hangover. My heart's been racing, I've been sweating, nauseated, feeling achy and awful.

I generally don't drink anymore but I made an exception for this one party. Nooooot happening again. I'm worried that it caused actual physical damage tbh I wasn't a little tipsy I was totally gone. Though it doesn't feel much worse now than a really bad hangover.

Not sure if I should mention it to my doctor or what, I'm mostly just... incredibly embarrassed and feeling terrible.
 
Izzie said:
I was at a family function yesterday and had some wine with dinner and I don't know if there was some interaction with medications or what but I had a pretty bad reaction - basically got completely wasted on two glasses. It was pretty embarrassing, I still feel terrible - physically and mentally. And it caused pretty bad D all of today along with a really scary hangover. My heart's been racing, I've been sweating, nauseated, feeling achy and awful.

I generally don't drink anymore but I made an exception for this one party. Nooooot happening again. I'm worried that it caused actual physical damage tbh I wasn't a little tipsy I was totally gone. Though it doesn't feel much worse now than a really bad hangover.

Not sure if I should mention it to my doctor or what, I'm mostly just... incredibly embarrassed and feeling terrible.
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That's what happens to me with any sort of alcohol - my face gets extremely red (almost purple) and my blood pressure either bottoms out or gets really high (usually it's elevated). Apparently, I lack an enzyme that helps my body metabolize the alcohol into sugar. I always feel like I have to urinate right away, too. Not a good feeling. I would mention it to your doctor just in case. If you still feel yucky, you might want to call the on-call service or go to the ER. It could be that your liver is affected by your IBD (especially if it's in your small bowel) and your liver is not producing a crucial enzyme.

http://goaskalice.columbia.edu/answered-questions/suddenly-drinking-alcohol-makes-me-sick
 
This is the first time anything like this has happened to me, and I drank some wine a few months ago without any problems so I'm not really sure what was different this time.

I'm feeling better, though. Hungover as if I'd drank a BOTTLE of vodka by myself or something, and kind of foggy mentally but it's getting better and better like any other shitty hangover so hopefully I'll be fully recovered after a good night's sleep.

But then of course I also have horrible cramps that I can never get through without taking acetaminophen or something but I'm very very hesistant to take pain medication right now after such a reaction, at least not until tomorrow.

I am definitely not drinking again, no matter how much people push me to "just have one glass". Not worth it.
 
Hi guys,

Having a really tough time of it ATM. I'm bipolar and going through a low, on top of that the saga of my diagnosis seems to be taking a stupidly long time.
Although my GP has informed me as early as March 16 that I definitely had a form of IBD (as per stool samples) and I've been having symptoms for over a year now, they've stuck scopes in me, up me, down me, biopsies and somehow, they still haven't come up with what the bloomin h*ck is wrong with me!
I've ballooned from a UK 6/8 to a 14, I've always been a small person and I'm in tears daily with people asking me when I'm due (it's never ok to ask!!) or the top that fitted last week now won't pull over my hideously distended belly.
I'm constantly vomitting, joint pain, bloating, indigestion, weight loss, constipated etc etc all the horrendous things I read about on here (minus the diarrhoea)
I'm at the end of my rope, I've tried making contact with my local group with no luck and I just seem to end up moaning on here all the time (sorry to you lovely people who put up with me) as I just don't know where else to go..
My work has been amazing, my employer is so supportive.. But he doesn't know what to say or do anymore than I do.
I'm sorry for dumping on you lot, I'm just in a very low place =(
 
Izzie said:
This is the first time anything like this has happened to me, and I drank some wine a few months ago without any problems so I'm not really sure what was different this time.

I'm feeling better, though. Hungover as if I'd drank a BOTTLE of vodka by myself or something, and kind of foggy mentally but it's getting better and better like any other shitty hangover so hopefully I'll be fully recovered after a good night's sleep.

But then of course I also have horrible cramps that I can never get through without taking acetaminophen or something but I'm very very hesistant to take pain medication right now after such a reaction, at least not until tomorrow.

I am definitely not drinking again, no matter how much people push me to "just have one glass". Not worth it.
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According to my research, your tolerance can decrease over time and your liver won't produce enough enzyme to convert the alcohol to sugar. The alcohol will just keep recirculating over and over again, if your case is especially severe.

http://www.mayoclinic.org/diseases-conditions/alcohol-intolerance/basics/symptoms/con-20034907
 
Cenedra, if it's not ok to complain here, I'm in big trouble because that's all I do. It sounds like you have some sort of obstruction, have they done a CT scan yet? That's what got the crohn's diagnosis for my hubby, although he should have had it sooner with abnormal scopes, etc. (was told it was just IBS), but his gut was extending greatly at the time too. And now I'm going thru similar things. My stomach is getting bigger and I'm losing weight. One minute think I just have IBS myself, the next think I have an IBD (but have had some definite infections and other GI issues). I don't know how much you can request or push getting any type of testing done in the UK, but that would be my suggestion since it sounds like you have had the other types of testing thru scopes, etc.
Hi all the rest of you, I'm not saying a lot else (for me) today as I don't feel well myself. Our houseguest for the week finally left, and tho we love Doug's brother, it's just nice to have our space back. I'm trying to not get a migraine (again), have my own tummy issues going on, and Doug is definitely in his worst flare since his surgery in 2010.
Everyone here seems to be having a tough time of it too, so I'll just say big (gentle) hugs to all.
 
Hi Cenendra, don't worry about feeling like you're moaning, that's what we're here for, and it sounds like you've been through a lot. Not everyone with IBD has diarrhea - some have constipation and a few even have normal bowel movements. We're all a little different and that's one of the reasons why it's sometimes so difficult to diagnose.

You said they think you have IBD - have they tried any meds on you? It's not right to let you suffer like this if they feel that's the diagnosis. Have they at least given you meds for symptom relief?

I really feel for you, I'm in a pretty low place myself (in a nutshell, I've been ill for nearly 7 years, and currently have been in a bad flare for a month and steroids aren't working this time even though they've worked in the past, so it's scary because I now don't really know how I'm going to get out of this flare). We're here for you, so like I said please don't feel like you're moaning. We're all in the same boat in here and we know you're legitimately suffering and your complaints are absolutely valid. Hang in there!
 
Sandy, sorry to hear that Doug is flaring too - coincidentally, this is also my worst flare since 2010. Is there something in the air or water?? At urgent care last week, they told me that there are a lot of people coming in with bad diarrhea, but they don't know if it's something going around or what. For me, I don't think it's viral because it's been a month. And they ruled out the major bacterial infections (c diff, salmonella, campylobacter, etc). So it appears to be a flare for me. I still feel somewhat unsure of that though because the steroids always work so well. Ugh.

Anyway, I hope you and Doug both feel better soon. Enjoy having your space back and get some rest and heal as much as you can. Big hugs to you too!
 
SandyUte said:
Cenedra, if it's not ok to complain here, I'm in big trouble because that's all I do. It sounds like you have some sort of obstruction, have they done a CT scan yet? That's what got the crohn's diagnosis for my hubby, although he should have had it sooner with abnormal scopes, etc. (was told it was just IBS), but his gut was extending greatly at the time too. And now I'm going thru similar things. My stomach is getting bigger and I'm losing weight. One minute think I just have IBS myself, the next think I have an IBD (but have had some definite infections and other GI issues). I don't know how much you can request or push getting any type of testing done in the UK, but that would be my suggestion since it sounds like you have had the other types of testing thru scopes, etc.
Hi all the rest of you, I'm not saying a lot else (for me) today as I don't feel well myself. Our houseguest for the week finally left, and tho we love Doug's brother, it's just nice to have our space back. I'm trying to not get a migraine (again), have my own tummy issues going on, and Doug is definitely in his worst flare since his surgery in 2010.
Everyone here seems to be having a tough time of it too, so I'll just say big (gentle) hugs to all.
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Sandy I hope you both feel better soon.
 
MissLeopard83 said:
According to my research, your tolerance can decrease over time and your liver won't produce enough enzyme to convert the alcohol to sugar. The alcohol will just keep recirculating over and over again, if your case is especially severe.

http://www.mayoclinic.org/diseases-conditions/alcohol-intolerance/basics/symptoms/con-20034907
Click to expand...

Thanks for the info!

It was quite scary, and it definitely feels like it's taken my body longer to snap out of it than it would have if I'd just overindulged and had a regular hangover.
 
Hey guys my first day on here so go easy on me. Just thought it would be nice to join and speak with people going through simular things to me as most of you would have probably experienced, many friends and family ect just dont seem to understand the stress and emotions of going through daily pain..ups n downs and know what we are going through.

A bit about myself...im 28 from wales, uk..
The last 6months or so i was experiencing severe stomach cramping/toilet issues and back problems. I had scans on my back and had a slightly prolapsed disk so had physio for a while and blamed my stomach problems on my back...this was previously being told i could of had caudia equinome syndrome but was ruled out. Then about 3-4 months ago the stomach pains were getting worse..started losing weight..struggling to eat 2 small meals a day when im used to eating 5meals a day (ex bodybuilder)..had severe swelling in my knees and ankles making it hard to walk and work..extreme fatigue and difficulty sleeping..constantly sweating and red patchy skin and eyes.

Luckily ive got private healthcare..so seen a specialist and had a flexisigioscopy which just examines the first half of the large intestine..they found nothing..
Then a few weeks later had a mri scan and found somekind of blockage on the ileum..the part where the small and large intestine connect.. this was just last week. The so called specialist doest know what it is or could be..so now ive been referred to another specialist and goto wait for a proper colonoscopy..which i think i should have had done in the first place to save all this time and messing around!!
As you all probably experienced its put a great deal of stress on my relationship ect but my partner has been incredable!! I just feel so guilty ive put her through all this!!
As im guessing most of you have done me and my partner have joined many sites and done many hours of research and it seems i have many symptoms of ileocolitis crohns?? Anybody else got any experience of this?? Sorry its been such a long post!
 
Hi Dave, welcome to the forum. I'm not a medical professional, but you are correct - you do have a lot of symptoms that would fit Crohn's (including the joint, eye, and skin issues - have you ever had those looked at?).

I'm glad to hear that you've got a supportive partner, having support is so important. And I wish you luck with the colonoscopy and with the second opinion specialist. When do you have those appointments? Please keep us posted on how those go.
 
I agree with Cat, Dave; and that is exactly where Doug's (my husband's) blockage was, and the other symptoms too. Good luck with everything and do let us know how things go.
(And yes, Cat, I think there is something in the air.)
 
Hi everyone! Thought I would drop a line, still undiagnosed. Going thru the process of gathering all my files from previous x-rays, blood tests, blood type, etc! I'm pleased I was sent this information as I can collect my thoughts and information before I see my GI in a couple of weeks.

I do want to share with everyone, those that have loose stools. What a topic for a genteel lady to be talking about! A good thing no one can see me, I'm able to hide, as I would not speak about this to anyone I know. Okay, 3 tablets of panadol 500/codine325, on waking, plus 2 gastro stop, this has stopped the runs thru out the day, later today I will repeat this, and hopefully it will stop the runs thru out the night.

Still having pain, taking target 5 in the morning, and 5 in the afternoon, another at bedtime, this gets me thru the night. Thanks for listening to me, glad I finally decide to contribute to this web site!
 
Cat-a-Tonic said:
Hi Dave, welcome to the forum. I'm not a medical professional, but you are correct - you do have a lot of symptoms that would fit Crohn's (including the joint, eye, and skin issues - have you ever had those looked at?).

I'm glad to hear that you've got a supportive partner, having support is so important. And I wish you luck with the colonoscopy and with the second opinion specialist. When do you have those appointments? Please keep us posted on how those go.
Click to expand...

To be honest i told the specialist about these symptoms and he didnt seem to care! :-(. Showed him my stomach going nuts making alot of noise ect and that was it.
Im hoping to be able to get an appointment with the new soecialist wuthin the next 10days..thanks for the reply
 
Dave, do make sure to tell the new specialist as Crohn's can cause joint, eye, and skin issues. I hope this new specialist is much better and not so dismissive.

Hi Lacey, don't worry about talking about loose stools (or anything else) on here, nothing is TMI on the forum as we've all been there & done that and we're free to openly discuss things on here that you might not talk about "in real life".

I'm joining you on having the runs in the night - it's 3:45 AM here, my guts woke me up at 2 AM with a jolt of cramps and urgency. I have been to the bathroom with liquid stools a handful of times so far this morning with no sign of stopping. I don't want to take anything today to stop the diarrhea, as I'm seeing my doctor in about 12 hours and I don't want anti-diarrheal meds to interfere with any tests he might want to do. So I'm just awake and suffering and counting down the time until I can go see my GI.
 
Cat-a-Tonic said:
Dave, do make sure to tell the new specialist as Crohn's can cause joint, eye, and skin issues. I hope this new specialist is much better and not so dismissive.

Hi Lacey, don't worry about talking about loose stools (or anything else) on here, nothing is TMI on the forum as we've all been there & done that and we're free to openly discuss things on here that you might not talk about "in real life".

I'm joining you on having the runs in the night - it's 3:45 AM here, my guts woke me up at 2 AM with a jolt of cramps and urgency. I have been to the bathroom with liquid stools a handful of times so far this morning with no sign of stopping. I don't want to take anything today to stop the diarrhea, as I'm seeing my doctor in about 12 hours and I don't want anti-diarrheal meds to interfere with any tests he might want to do. So I'm just awake and suffering and counting down the time until I can go see my GI.
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Thanks cat..yes il tell the new specialist everything! Just come from the gp again to get more buscopan..tramadol..nuproxen and phenergan to hopefully help with sleep :-/
 
Just a quick note -- immodium working some of the time. Like when I eat my usual low-residue diet, the immodium seems to work OK. But if I venture into the realm of "real food" then...yeah, the D comes anyway. Sigh.

At the same time, school started, and my boys are sick! :( Both of them started with body aches and being SUPER tired. Then the youngest started running a fever. After several days of low fever, I took him to urgent care, who sent us to the ED, who tested for what seemed to be everything before deciding it's just a nasty virus, but to watch him closely. Then my oldest spent all weekend sleeping 18+ hours a day, then spiked a 102+ fever with neck pain, so off to the ED he and I went. It's not meningitis, so again, they're saying it's just a "bad virus" and he's home and sleeping again today with ibuprofen in his system. Youngest is better as of yesterday and back to school today, at least. Then, my daughter is have some intense anxiety and possibly (likely?) depression over school (she has learning difficulties and didn't have an IEP in place all of last year, and it was horrendous :( ). So I'm trying to get her in to see a psych Dr once they open this morning.

All while also trying to finish my volunteer work for the same company that I'm also trying to learn the software for for my new job, and put the finishing touches on my 90 day plan that I present on Weds. And I think I may have a meeting with the administrator today to go over some of the company's history, if she can squeeze me in. (Dh is working from home, so if needed he can take our daughter to psych if appts overlap)

Oh, and I keep forgetting to follow up with the hospital about scheduling my procedure for the scope and ring widening!! Maybe I'll do that now that I remembered.

Wishing everyone health!
 
I go in for my CT scan with contrast today. See how far this stricture goes, I hope my surgery will only require one place to be removed. I guess most of all though I just hope if it is more that we can get it all out in one shot. I would rather not have a bag, I understand it is not that bad to have one especially now a days. I just hope to get the good ends reconnected and get back to work soon. My energy has been a lot better lately. I think this last terrible flare might be at an end(fingers crossed). I have been able to put on 6 pounds of weight, it hurts to eat and digest anything but I just keep at it lol.
 
I feel like I've been back and forth to the bathroom all day today. I'm definitely going more than usual - both 1 and 2 - which is odd because I haven't been eating much fiber. My lower abdomen is puffed out again. I'm really wondering if I have an ovarian cyst pressing on my lower organs that's making me go often. I know I don't have diabetes because the ER ran my glucose and it's normal according to my GP. I haven't been nauseous since Friday, thank God, and I didn't have the same pain that sent me to the ER on Wednesday. However, my irregular bleeding hasn't stopped yet and I'm really hoping the GYN doctor can do something about it because it is driving me crazy. The whole reason I got on the shot to begin with is to stop the horrible pain of endometriosis but I think I'd rather endure 5-7 NORMAL days of pain than over a month of this ridiculous "spotting" which is like a heavy cycle. UGH! :(
 
MissLeopard83 said:
I feel like I've been back and forth to the bathroom all day today. I'm definitely going more than usual - both 1 and 2 - which is odd because I haven't been eating much fiber. My lower abdomen is puffed out again. I'm really wondering if I have an ovarian cyst pressing on my lower organs that's making me go often. I know I don't have diabetes because the ER ran my glucose and it's normal according to my GP. I haven't been nauseous since Friday, thank God, and I didn't have the same pain that sent me to the ER on Wednesday. However, my irregular bleeding hasn't stopped yet and I'm really hoping the GYN doctor can do something about it because it is driving me crazy. The whole reason I got on the shot to begin with is to stop the horrible pain of endometriosis but I think I'd rather endure 5-7 NORMAL days of pain than over a month of this ridiculous "spotting" which is like a heavy cycle. UGH! :(
Click to expand...

Hope you can start to feel better soon.
 
Wildmtn, we're scope buddies! I got admitted to the hospital today for this stupid stubborn flare. I was really dehydrated again today and my stupid guts can't even handle Ensure, they can barely handle water. So I went to the ER and they decided to admit me. I'm doing prep in a couple hours and scope tomorrow. Good luck to you! I hope we both get some answers!

As for how I'm doing, actually somewhat better - they gave me IV steroids in the hospital and that's working better than the Entocort. I'm also on clear liquids right now so I feel better just because there's no food in my system. (I won't have to do very much prep, I'm already pretty close to being cleaned out.) It sounds like I'll have to do Golytely, though, which so far I've avoided. The nurse here is funny, she said "the only thing light about Golytely is the name." :p Ohh good, I can't wait. I'm sure my angry guts will love that, hah.

Not sure when I'm getting out of the hospital, I'll be here through tomorrow at least. So I'll be on sporadically checking in with you guys although I will surely be pretty out of it after my scope tomorrow.
 

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