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Crohn's Disease Forum

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lsgs said:
Hey guys thanks for all the replies, I find it so reassuring to post here you are all so lovely.

Either pain relief has kicked in or it's improving, pain's still there but not as bad.

I'm such an idiot, I don't know what would happen to my dog if I go to hospital. That worries me! And I don't know if any of you guys are like this but I'm quite secretive about my illness, only my husband has seen me in pain and I don't like people seeing me like that. I could have called my sister to come get me and I know she would, but she has two toddlers and I would feel guilty I was making a fuss. It's so stupid. Do any of you feel like this too?

I am slightly concerned as I have been going about 10 times a day and suddenly this pain starts and I'm only passing mucus for 2 days... Slightly worrying
Cat we get the prep sent out in the post like a week before, or I've picked it up at hospital before if private. I would hate to have to go pick up my own prep. I don't think I would go, I would wuss out! haha.
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It's not a big deal!
Do you know how many people have to do this stuff! Hope you feel better soon!:hug:
 
Cat-a-Tonic said:
I was on Entocort (Budesonide) for about 7 months, and I had some pretty strong food cravings too. I had lost about 20 lbs from being so ill, and I gained back about 25 lbs on the Entocort over the course of 7 months. So not too bad, I gained back a little more than I should have, but I didn't balloon or anything. Although I will say, being so sick and losing the weight, I'm sure I was losing muscle & bone mass. Gaining weight on steroids, I seemed to gain it all back as abdominal fat! I had a gross flabby belly which I somewhat lost with exercise but is still there a little bit. I lost the extra 5ish lbs and I'm back to my "healthy" weight again, and exercise has also helped me gain back my muscle mass, so Gabi, hopefully you have a similar experience and can just regain your lost weight and get back to a healthy weight. If you can, I strongly recommend exercise (steroids themselves can rob you of muscle & bone mass too). Feed your body well when the cravings hit, don't just automatically reach for junk food if you can avoid it. I scarfed down a lot of chocolate-flavored rice cakes while on steroids, as they are sweet but low-calorie and relatively healthy.

lsgs, that's good to know about this prep - that seems to be the general consensus of what I've read about it, that it's easy to drink and isn't crazy harsh on the system. Gatorade & Miralax was easy for me to get down in the sense that it didn't taste bad, but I did have to drink a lot (64 oz Gatorade mixed with a full bottle of Miralax), and it was really rough on me and dehydrated me badly. I'm hoping that this Prepopik stuff is easier in that regard, I just don't want to end up on IV fluids again! I'll keep you guys posted - prep day is Tuesday and my scope is first thing Wed morning, so I'll be around on Tues having a prep pity party for myself, and I'll hopefully be coherent enough by Wed afternoon to let you all know how the scope was.
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I did the miralax and they told me to drink water and broth as well to keep my strength up. Ginger ale was ok too.
 
Wow there has been so many posts here since yesterday!!
Chickadee that's a fab idea I'm a size 0 so prob fit into kids pull ups!! It's a thing I have in common with my grandmother! Does anyone use tena lady? I think it's mainly for bladder incontanance though.
Isgs I can't sleep mainly due to pain and toilet runs plus my toilet is a long way away from my bed too so I usually end up sleeping on the sofa :( That's insane about your doctors not believing a simple black and white test. Inflammation is inflammation and it doesn't matter where it is in your GI tract. Definitely see a new doctor personally I've had 3 GIs and a surgeon and the surgeon was the only one who requested the fecal Cal which I thought was so funny (sarcastic) Some GIs aren't really qualified to do their job I don't think. Isgs I'm really like you when I'm so ill I never want to leave my dogs but when you have to go you have to go (pun intended!) one time I was in ER my neighbour text me and said my dogs were very nervous that I was away- I was so upset I tried to leave but the nurse wouldn't let me go home. So I understand how you feel about your dogs. Is it possible to hire a pet sitter as I know some can be very reasonable and if you got them used to the person it would be worth the peace of mind for you in the future.
Cat- fab idea on the rice cakes. I just seem to want bread but after I eat I be so sore still (norm for me) I walked my dogs yesterday and I felt good after it but sometimes after it I feel horrible and can't really make it home. Thankfully my partner walks them for me when I'm not up to it. How long until the colonoscopy now Cat? I hope the prep goes well for you and you have plenty of supplies in!!
Just on a side note does anyone else get really guilty cancelling plans or avoiding things because you are too sick? I've lost so many "friends" doing this an I know they aren't true friends but it still hurts. I always feel like I've let everyone down and it's my fault.
 
chickadee, I would imagine the sore throat was from the intubation. It can be quite painful as the laryngoscope that hold open the oropharynx to allow the tube in can scrape the thraot and if they use tooo much pressure it can cause some bruising. the tube just being there is irritating. I'm quite experienced in this area as I am a respiratory therapist :D and have assisted with many intubations and done many extubations.
 
Hi all...I am new to this group.

I am currently in the process of trying to get a diagnoses. Had CT last Thursday and it showed significant small bowel inflammation. I currently am suffering from severe abdominal pain, back pain (like someone taking a corkscrew to my abdomen and trying to drill through my back), diarrhea (which has now lessened after taking pain meds and prednisone), weight loss, fatigue and nausea. I have had issues for years but was always wrote off as IBS. I have been on Nexium for the acid refulx since 2010, prior to that I was pervicid and zantac. I was put on Nexium after having my gallbladder out. The gallbladder just quit functioning. I ended up with a severe intestinal infection.

Today is a really rough day. I am in so much pain. Doc only put me on a low dose prednisone until she can do the upper endo and colonoscopy scheduled for Friday. I really don't know how much more I can take. While I don't have water stools, they are now pencil thin and take effort to pass. Still have to run to the bathroom cause it feels like I am going to have a loose bowel.

Sorry I just need to vent somewhere. I am trying to work and have no concentration due to this ridiculous pain. Guess I had better try and get some work. Thanks for listening.
 
Hi Reflection, welcome. What did your doctors say about the inflammation in your small intestine? Was the inflammation all throughout your small intestine or was it in a specific spot? I'm a bit surprised they're doing scopes - the scopes only see the very beginning & very end of the small intestine. Is the prednisone helping at all? I'm also a bit surprised they'd put you on pred and then do scopes - pred usually works fast, so it might heal things up a bit by the time you have your scopes.

Gabi, they're not really your true friends if they're getting mad about you having to cancel plans. Can you make plans with them that allow you to stay at home - things like movie night? I used to do "bad movie night" with my friends all the time, we'd pick a really bad movie and watch the whole thing while making fun of it. :p It's not your fault for cancelling plans though, it's the illness. I know it's not fun to cancel plans and I try to avoid it myself. My own mother once got mad at me because I was having a really bad day, but she wanted to go shopping. I didn't cancel with her because I thought she still might want to see me, but apparently not. All I was up for was to sit and watch TV, I was not well enough to go shopping like she wanted. My mom kept making snippy comments like, "You should have just cancelled plans with me so that my day wasn't wasted", etc. So even if you don't cancel plans sometimes you're made to feel bad!

Thanks for asking about me, my scope is on Wednesday so prep day is tomorrow. Eek! I did finally get my prep, they just got it in at the pharmacy this afternoon. I have lots of supplies stocked up too, wet wipes and creams and sports drinks etc. My hubby has to work until 7 PM tomorrow, so I'll have the bathroom all to myself until he gets home from work, so that's a bonus too. I'm going to watch some movies and just relax.

Oh, for those who were asking about the Prepopik prep - Chickadee I think? - it was $32, so not bad. I had a $10 off coupon which I got from the manufacturer's website, it would have been $42 without the coupon but with my insurance (I've read that it's about $100 without insurance). I'll update you more on how it goes when I actually drink the stuff tomorrow. Wish me luck!
 
When I was in the doctors office today I saw some literature for prepopik so it shouldn't be too hard to request next time I need prep. Apparently I don't need to do bowel prep for my double balloon coming up. This one is an endoscopy, but he said he'll decide when he is in there whether or not I need to have a colonoscopy one. yay? not yay. I get nervous about general anesthesia. so anyway that appointment is September 10, a full month before they had openings. Once again I was super lucky and a cancellation came in while I was sitting there. I'm so sick of all this. Also, I'm not taking the dexilant anymore. I asked the new GI about taking something else, and he said he didn't see any evidence of GERD. So I don't know what this acid burping stuff is.. I'm going to try prilosec again.
 
I saw my GI today, and he agreed to have the staining done on my colon biopsies to look for mast cells (to see if I have Mastocytic Enterocolitis). I should hear back in 2-3 weeks.
 
I'm so nauseous today it's ridiculous. I've already taken two zofran (pretty much back to back because I vomited right after the first one). I feel like I shouldn't take a third one, but ugh. I need to eat something and I can't at all figure out what I am willing to put in my mouth. I hate this kind of nausea.. worst kind. never goes away, hurts, makes me psychologically unable to put food in my mouth. hate.
 
Carrie, I know exactly how you feel. I hope you get some relief soon.

Chickdee I hope you get the results come back and finally have some answers

Cat- The doc indicated that the inflammation was in the end of the small bowel where it connects to the colon. She is doing a colonoscopy and an upper endo. I believe the upper endo is to look at the bile ducts as I had my gallbladder removed 3 years ago. My Alk phos is rising so she was to actually look at it to make sure nothing was missed on the CT. She put me on presdnisone, low dose to try and reduce some the swelling to reduce my pain level. She said it may some healing but will take "numerous" biopsies. I am not sure the dosage is high enough as I am not getting a lot of relief from the pain. It is barely tolerable. She is pretty sure it is Crohn's but there is always a chance it is something else. Right now I really just want answers and then at least we will have a firm course of action.
 
Good luck with prep Cat keep us updated I know that can be a long lonely day. I also pray they see something that they can help for you instead of just everything normal.

I suppose these friends aren't true friends but it still hurts! I k ow what some people are thinking like- you have changed. Yep pain will do that to a person.

My stomach is so swollen today I feel pregnant and I'm so tired all the time and as always the pain is unbearable. Need a break from this crap :(
Bloods again tomorrow to check for potassium and full blood count too.
 
Thanks Fosters and Gabi! I'll let you know how the prep goes.

Carrie, I know that kind of nausea. I was so nauseous once and I went into the break room at work to make myself some tea, because I thought I could stomach that. I glanced in the newspaper while I was waiting for my tea water, and there was a picture of a fish in the paper. Not even a photo of a fish, like a drawing of an outline of a fish in an ad for a fish restaurant. Even that made me so nauseous I could not even stomach my tea! That was a new one, I never had a drawing make me feel so sick before. And I'm sure I had been taking Zofran that day too.

Reflection, so it sounds like your inflammation is mainly in the terminal ileum? That's the most common spot for Crohn's to manifest. They can reach that spot with the colonoscopy (make sure they take biopsies!). What dose of pred are you on?

Gabi, good luck with the blood work. How are you doing on the Budesonide, still having bad side effects or is it getting a little better?
 
Hey Cat, yep I pretty sure that was what she called it. She described it so I knew what the heck she was talking about. It was pretty late on Friday night when she called so it was kind of hard to absorb everything she said. I do know she said that she would be taking "numerous" biopsies. She stated that a couple of times. She put me on 20 mg ped. She said it may clear up some of my areas but felt due to the amount of pain I was in that it was appropriate. I also am on zofran for nausea, and have norco for pain meds but she doesn't want me to use them unless absolutely necessary. I try not to take them at all. On top of my regular meds (nexium, estrodial (hysteroctomy at 26) and levothryorxine (low thyroid)) I gonna need to use a tracker so I know when I took what. LOL. Sorry for the miss spells. Spell check doesn't work well for meds :)

I hope your prep goes well. I do mine Thursday. Best of luck!
 
Reflection said:
Hey Cat, yep I pretty sure that was what she called it. She described it so I knew what the heck she was talking about. It was pretty late on Friday night when she called so it was kind of hard to absorb everything she said. I do know she said that she would be taking "numerous" biopsies. She stated that a couple of times. She put me on 20 mg ped. She said it may clear up some of my areas but felt due to the amount of pain I was in that it was appropriate. I also am on zofran for nausea, and have norco for pain meds but she doesn't want me to use them unless absolutely necessary. I try not to take them at all. On top of my regular meds (nexium, estrodial (hysteroctomy at 26) and levothryorxine (low thyroid)) I gonna need to use a tracker so I know when I took what. LOL. Sorry for the miss spells. Spell check doesn't work well for meds :)

I hope your prep goes well. I do mine Thursday. Best of luck!
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Welcome "reflection" and hope you are feeling better soon. I hope you and CAT both have an easy time of it with your prep, because then the rest is easy! keep us posted how everything goes! Thinking of you! Teresa:)
 
Hi gabi - how is your stomach feeling today? :(

Cat - how is the prep going? (Is it just 2 cups?) Thats all I had for picolax.. and had no bloating with it. What time is your scope tomorrow? (Im keeping my fingers crossed for you!) X
 
Bozzy, it's still early here - 9:30 AM. I start drinking the prep around 2 PM (may start a little sooner than that to try to get all cleared out by bedtime). I'm supposed to stop eating solid foods by 10 AM, so I'm having a small plate of eggs. Getting nervous though. Woke up feeling icky and had d twice already. Soooo not looking forward to spending the entire evening in the bathroom! Just gotta get it over with. Tomorrow I just wake up early and go right to my scope - I have to be there by 7 AM. So that part should be okay, I don't have to wait around or anything. But I just don't think it's a sign of good things to come, if I already want to put my heating pad on my tummy! :p

Edited to add: Yes, it's just 2 cups. I'm thinking of drinking one around 2 PM and the other around 7 or 8 PM (you're supposed to drink them 6 hours apart, so I might drink the first cup earlier).
 
Wow, it amazes me you only have to drink 2 cups. I've never heard of that. For me getting all that liquid down was the hard part. You can easily drink broth and sort of feel like you are eating something later or have a popcycle.
I always felt too bloated from the prep to want other things till i reached the very end and the end was becoming vacant (LOL). Hoping you both have an easy time of it and all goes well tmro!:)
 
Crossroads, it's called Prepopik, and yes, you only have to drink 2 small cups (you have to drink other clear fluids to stay hydrated of course, but you can choose whatever you want to drink). I'm making chicken broth for dinner and I have some jello in the fridge too. I'm having tea right now and I have a bunch of gatorade & crystal lite on hand too.
 
2 cups! eesh I'm definitely asking for that one next time.


I am soooooo happy that I didn't wake up nauseous! yay!
 
Yeah 2 cups.. it was great. Just to point out though.. for me.. it took ages to kick in (I got worried that it wasnt going to work!) But it did :)

The klean prep I had previously involved LOTS to drink and I felt awfully bloated.. but picolax didnt! I hope your experience is just as good :hug: (although its not fun to have laxatives)
 
Cup #1, down the hatch! Wow, for those thinking of doing this prep - mix it with COLD water and drink it down fast. The instructions said to mix for 2-3 minutes. No. It seems to get warm (weird chemical reaction?), and the longer I mixed, the warmer it got. Slightly nausea-inducing to drink something warm that should not be warm! Other than that, it was okay. I am definitely glad I only had to drink a small cup of it, I would not be able to do it if I had to drink a lot of this stuff. Cup #2 will be at around 7 PM (it's 1:20 now).
 
The instructions specify not to pre-mix, so apparently that's a no-no. I'm just going to use really cold water and mix it quickly and chug it down for the 2nd cup, so hopefully it won't have a chance to get too warm.

Presuming I even need a 2nd cup, that is! My stomach has been bad all day, I've had d about 6-8 times before even drinking the prep. It will not take much to clear me out. The first cup hasn't hit me yet so I'm not sure how powerful it'll be. But I've always been told, if I'm going clear, then I can stop drinking prep. That gets a little interesting when you're only drinking 10 oz total of prep! We shall see what happens.
 
I am so nauseous! Had a huge wave of nausea come out of nowhere. Can barely move. Took some more zofran, hope it kicks in soon. I have been drinking a lot today in an effort to stay really hydrated, so I'm not sure if I just have too much liquid in my stomach or if the prep is making me nauseous.
 
Cat, maybe put water in freezer and take out before it actually starts getting any ice crystals or slush. In other words getting it to the coldest temp without changing from water. Maybe take a glass of crushed ice and put in the refrigerator to thaw. Should be colder than just refrigerated water.


I do have a question for all, but am not sure where I should post it. I have had diarrhea this morning. Pretty much down to just pure yellow water. Well, when I wiped I found two "flesh" looking lumps. One was more red and had ridges. The other more smooth and looked like a chunk of soft tissue. Neither broke apart with a toothpick. Seemed to be rubbery. I do not have blood that I can see. And don't believe I ever have. Kind of freaked me out. I even took a pic. Wow, I can't believe I have resorted to playing with my poop and taking pictures. :rof:
 
Cat-a-Tonic said:
I am so nauseous! Had a huge wave of nausea come out of nowhere. Can barely move. Took some more zofran, hope it kicks in soon. I have been drinking a lot today in an effort to stay really hydrated, so I'm not sure if I just have too much liquid in my stomach or if the prep is making me nauseous.
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SO sorry Cat. I hate nausea. Zofran has been a life savior for me. When it works. Sometimes I just wish I would vomit, cause that would be better than the nausea. Hope you get some relief soon!! HUGZZZZ!
 
Reflection, what have you been eating lately? Is it possible it's undigested food that kind of looks like flesh?

I have a question too. For Bozzy or others who did Prepopik/Pico Salax/Picolax, how long did it take to kick in? And did you have nausea from it? I was a little nauseous this morning, but I'm ridiculously nauseous now. I had high hopes for this prep, but wow, it is just wrecking me with the nausea!
 
Cat, I haven't ate anything but a little bit of toast to take with meds. Everything else makes my pain off the charts or nauseous. Doc recommend I stick to lots of fluids and not much solid till after the scopes. If anything the red one looked like a piece of meat. But I haven't had meat in three weeks. I sent the pics to my daughter, she works at Stanford Hospital. She showed it to someone there (I assume one of her doctor friends), and they told her it was a symptom of Crohn's but didn't say what they were. I am asking her now.
 
Cat, you should call the doc. The dizziness and nausea is concerning. I could understand if it was cramping etc. We all expect that. Never hurts to place the call.
 
Thanks Carrie. I'm somewhat able to hold it together as long as I distract my mind from how my body feels. I'm watching a Korean drama and trying to pick out words & phrases I know. I just learned a new phrase in Korean, too - 내가 왜? Naega, wae? It means, why me? I think that's rather fitting for today! I didn't know how to write the "w" sound in Korean until today either (there's not one character for it, you have to combine a couple characters to make the "w"). Sorry for nerding out, but that helped me distract myself. :)

I feel slightly less yucky after writing all that. Clearly I need to study more Korean as it's helping me forget how hideous I feel.
 
Reflection, I'm a little less dizzy now. I think the zofran kicked in too because the nausea isn't quite as terrible. It was bad for about 20 mins. Hopefully it goes away! Distracting myself is helping.

If it's not something you ate, and it doesn't sound like mucus to me, then I'm stumped - not sure what you're passing! Hopefully your doctor can figure it out during your scopes.
 
Wow, the liquid-poos have begun already! That was quick, I drank the first cup about an hour ago. It wasn't too bad though, it wasn't crazy explosive and there wasn't huge urgency to go. Once you get past the nausea & dizziness, so far this prep isn't too bad. :p
 
Glad the zofran is helping Cat. Daughter said the doc at Stanford thought it was pieces of infected intestine. What the heck!! My doc will be calling tomorrow to check on me and give me my appointment time for the scope on Friday. Will ask if they want me to send them the pic.
 
How did the prep taste? I'm glad you're starting to feel better.

Reflection, that's kind of scary! Hugs
 
Carrie, the Prepopik was fizzy and kind of tasted like Sprite (warm sprite, ew). It wasn't bad, the warmness was the worst part. If it were cool/cold then it would be much better.

Reflection, so you're doing prep on Thursday? What prep? This one actually isn't bad once the initial nausea & dizziness ebbed somewhat. I was miserable there for a bit but doing somewhat better now.
 
Thanks Carrie...yeah kind of scary. But hey this pain I am having is scary. This entire journey is one I don't relish.

Cat, Yep I start on Thursday, except for the dulcolax I take at bedtime tomorrow. Doc prescribed Suprep. Anyone have experience with that??
 
Cat your story about the cartoon fish making you nauseous made me laugh!! I never experienced the side effects you have with the prep. How's it going now?
 
lsgs, it's going okay. I've only gone to the bathroom 3 times so far, so this is definitely being more gentle on me than Gatorade & Miralax was. The dizziness & nausea are mostly gone - I'm not looking forward to drinking that second cup though!
 
So far so good! Drinking tea, watching the Muppet Movie, and painting my nails. The bathroom trips have dropped off, but will surely pick up again when I drink the 2nd cup in an hour or 2.
 
Hi cat.. just a quick reply to your question (as it is gone midnight now)
I remember my picolax tasting like a sickly orange sherbert. . And it did the reaction of becoming hotter as you mix it.

You are probably dizzy because of dehydratiom.. I get like that all the time. I dont remember having nausea.. except for just after drinking it.

Hope it gets easier for you xx
 
Thanks Bozzy! I'm pretty sure I'm not dehydrated - I've been drinking tons and tons of clear fluids! And I'm peeing clear, so I don't think I'm dehydrated. I'm on my 3rd 32 oz bottle of gatorade, I've had a ton of water, some tea, etc. My instructions say to drink 64 oz of fluids while doing this prep - I've already had more than that and prep is only halfway over (I just drank the second cup). I used very cold water and drank it right away before it could get warm - and you're right, there is an orangey taste to it. Feel a bit dizzy again but no nausea so far (I did take a Zofran prior to drinking this cup, to try to stop the nausea before it starts). I think I've counted 10 bathroom trips since starting prep? It's 6:20 PM here so hopefully I'll be done going before very late. I have to get up at 6 AM to get to my scope (7 AM check-in time, 8 AM scope time) so hopefully I can get some sleep tonight.
 
So it's been something like 40 mins since I drank cup #2 of prep - and I'm quite dizzy again! Fortunately no further nausea though. This dizziness is annoying, but not debilitating the way the nausea was, so I can deal with this. It's almost 7 PM - 12 hours until I have to be at the GI clinic! Hopefully I can sleep for the majority of those hours, ha ha. :p
 
Getting worried now. It's 9 PM and I'm still not going clear. I did the prep as instructed, and I've had more clear fluids than the instructions said. I also took some Dulcolax to try to get things going again. I don't know if I'm going to be clear enough for my scope tomorrow. Frustrating!
 
Thanks Reflection. I took 4 Dulcolax and that seemed to help, but then I kinda stopped going again. Just took 4 more Dulcolax and hopefully that'll get me fully cleaned out. I never had this issue with the Gatorade & Miralax prep - I got TOO cleaned out with that prep, I just kept going and going for hours after I was clear. I'm mostly clear now but there are still "bits" for lack of a better term. Hopefully I'll be okay for tomorrow.
 
clear with some bits should be ok, Cat. That's what I was passing before my last scope and they said my prep was good.
 
Thanks Carrie, that makes me feel a lot better! I just went again and there were fewer bits, but still bits. I've gone like 20+ times easily, it is so frustrating that there are still bits after all that! But I must surely be mostly clear by now. I've done everything I can... guess I'll try to go to bed once the Dulcolax starts to wear off.
 
Okay, so, it's 2 AM. I managed to sleep for a couple hours, but woke up at 1:30 having to go. And my first BM after waking up was so not clear! I was upset. I've been to the bathroom about 3 times since, and I'm going more clear now. Still not totally clear though! I'm allowed to drink water for up to 4 hours before my scope, so I have another hour of that, so going to stay up and drink and try to flush myself clear already! This is getting ridiculous, I can't believe I'm not clear yet. :p
 
Hey Cat don't panic that happened me too rang GI ad he sai it was fine and got a good scope. Good luck with the colonoscopy thinking of u today
 
Boozy stomach seems to have settled back to "normal" whatever that is! I can't believe it I've lost another 3lb in the past week I thought steriods make you put on weight. I've got the doctors now for a review I hope she just puts me on prednisone and stops messing about surely it's my choice too!? Nothing ha changed on the current steriods and I'm worried because what if my inflammation is higher and it prob is as I've a lot of upper GI tract problems too. Sick of being sick :/
 
Thanks guys, you are all so helpful and sweet. :) Last time I went to the bathroom, I still wasn't clear, but hopefully it's okay like it was for all of you. I think I'm now dehydrated enough to where I'm not going anymore, I feel a crampy urge to go but nothing comes out anymore. It's just past 6 AM and I'm heading over to the clinic in a few minutes. Wish me luck! I'll update you later today if I'm coherent enough to do so, otherwise I'll update you guys on Thursday.
 
morning everyone.
Cat, I hope your test goes well!

my blood tests from Monday came back. They are worse than the prior set a month ago. I don't understand what the results mean, they're kind of weird. what I do know is that the hematologist is going to want to see me again. I made a small list in the hopes it'll be easier for me to research. Here it is:

CBC:
high WBC (was normal)
low and decreasing MCV
low and decreasing MCH
high and about stable or slightly decreasing RDW-CV
high neut% (was normal)
low lymph% (was normal)
high ANC (was normal)
FERRITIN:
normal but decreasing ferritin
IRON + TIBC:
low and decreasing iron
low and decreasing transferrin
normal increasing TIBC
HAPTOGLOBIN
high haptoglobin (first test)
RETIC COUNT:
normal increasing retic

At least I feel like we're getting somewhere. finally. even if I have no idea where we're going. I used to think I had some idea, but I confess I really have no clue anymore. I think these results can still be indicative of crohn's, but also of other autoimmune disorders.

I'm somewhere around 22 pounds down. so that's good and bad. I still have a good 60-80 lbs of extra on me so plenty more to lose. it's bad because I'm not trying.. and in the past I couldn't even lose weight if I tried. The only time I did was when I was on medifast.
 
oh and Cat, if I remember right I did pass yellowish/brownish liquid the morning of the scope after the clear with bits the night before. If you think about it.. you had the extra liquid in your intestines all night. any little pieces in there would soften up even more and color your output. so that's a good thing :)
 
Hi everyone
My doctor has just taken me off the steriods!! She said there is no point in me being on them if they aren't helping. It's been 7 days!!! She rang my GI to see what to do and apparently I'm on the Emergancy waiting list to see him and it will be 4months. Red flag is two months and this is cancer only. I feel I've gone 2 steps forward and 4 back. I just left the doctors and cried. I begged her to try me on pred but she said she couldn't justify it. How can she justify my pain my incontance Etc??? I also need to make the decision of going back to uni or not in the next week and it doesn't look likely. So there goes another year. I've been sick for 16months why can't someone just do something? Everyone just passes the buck. No one knows what to do with me!! Oh and even worse this never goes away! So IBD for life. Seems like dreams of a career as a doctor is even further away the closest I will be to a hospital is in one. I wish I didn't have a bowel anymore or equally a brain so then I wouldn't care.
I have the option of going private but then ya explaining my entire story to a new GI 4th maybe 5th one now I've lost count. How can they make me go through this again.
Oh and potassium back and yes low again never moved up even though I'm on potassium tablets.
Being sick sucks but knowing that you have it for the rest of your life sucks even more.
Rant over....maybe not!!!
 
Gabi, I'm so sorry you have to wait so long. That doesn't seem right at all :( I have no idea how your healthcare works, but is there somewhere else that would see you sooner?

and I think today is pity party day. so don't beat yourself up. *hugs* I'm doing it too.
 
I'm back from my scope. Normal of course. Bleeding was caused by a couple of small internal hemmies that the other doctor apparently missed. I also had a couple small polyps but GI said that they don't appear to be pre-cancerous but he'll have the lab look at them to be sure. He also took biopsies throughout, including from the TI. No inflammation or anything indicative of IBD though. Not holding my breath on the biopsy results though since everything else was once again normal.
 
Cat, I feel your frustration I'm in the same boat, my endoscopy and biopsy was apparently normal despite elevated protectin (?) levels in my poo and constant waves of pain for the last 3 months. I am now booked in for a small bowel study, apparently I drink litres of contrast fluid in order to hyper hydrate me and show the lining of the small bowel. I was booked in as urgent but typically the promised 2 week window has now been changed to mid September, not very happy as I'm feeling quite depressed and unable to play with my children. Also upsets me when the older daughter gives me a cuddles, cries and say "daddy I want you to get better" very puts a lump in my throat. I'm guessing I keep taking pain meds until an answer is sought!
 
Cat I'm sorry to hear I know how you feel- I know that sounds weird to say sorry nothing was there but you know what I mean. How do you feel physically after it?
Thanks Carrie I can try and go private but 10min appointment is £140!!
 
Hi Gabi - it seems it takes forever to get anywhere with the Nhs, I really considered private insurance but of course as its a pre existing condition no one wanted to know. Private is just so expensive but if I had the money I would- I simply don't so can't. As for your career I was training as a degree level paramedic before this nasty beast showed its head, it seems the most talented of us are always held back, I have so much potential to give but feel imprisoned by this "disease".
 
Oh, Cat, BOO! I was so hoping for some good news for you. Some hemmorhoids, seriously? How can there be nothing to see. Frustrated...

I am feeling like total BUTT today. My aunt came to visit Monday and brought me some rhubarb crissp and I just had to eat some last night. Rhubarb is supposed to be okay for me, but I'm thinkingthe "crisp" part had flour in it and maybe some buttter. I'm going to ask her for the recipe so Ican figure out which ingredient got me. I have had a ton of pain in my right abdomen alll day and this morning I had diarrhea. which is kind of crazy for me, I dont get diarrhea a lot. so no more rhubarb crisp for me.
 
Gabi-- I'm so sorry. :( What if you went to the emergency room/A&E? Would you be able to see a gastroenterologist any sooner? I may have asked you this before, but have you tried cholestyramine? It won't help with "root" causes or reduce inflammation, but it's helped me with D and urgency quite a bit. Maybe your doctor could prescribe that for you while you wait. Waiting sucks......

Cat-- I can "hear" your frustration. My colonoscopy in June was almost exactly the same-- internal hemmies, one polyp, all normal but took biopsies. It's so frustrating when we're sick but the doctors can't pinpoint why. I wonder if it would be worth asking your doctor to stain the biopsies for mast cells too?
 
I'm scared this evening, had a good day but the pain has showed it's nasty head. I also had a very vivid dream of my deceased dad last night, he gave me a big hug which felt real - god I hope I ain't gonna die any time soon!!
 
Hi all. I have reread your posts a dozen times but I can't concentrate today. So I am sorry if I miss giving you support. Definitely not done on purpose.

Cat - Praying that the biopsies come back and show something so you can get answers. I know the frustrations of not having a diagnoses. I have been showing symptoms for many many years but I was told it was IBS and to just learn what foods aggravated me. I quit complaining to my docs because I thought it was "just IBS". Never realizing I could actually be dealing with something like CD. In 2010 I was very very sick (constant vomiting, high fever (104 plus), brown urine, and liver enzymes, through the roof but they chalked it up to my falling gallbladder (ejection rate of 6%); which they removed and an intestinal infection. My vomiting did stop and my blood work did look better, but I continued to have pain and diarrhea continued but I chalked it up to eating something to fatty. My fault for not speaking up. I sure have learned my lesson. I have never had tests, that I am aware of that looked specifically for CD till now.

Gabi, I am sorry about your issues with getting quality health care in a reasonable time. I don't know much about your health care system. I am very fortunate as I have coverage through my employer and am able to get most of my procedures with a week to two weeks of being request by the doctor. Also, we are fortunate that if it is urgent we can go to the emergency department and the doctor can have the tests done without first obtaining insurance approval. As far as your career, I am not sure how far you are into your education, but is it possible for you to do a one or two classes per a semester online? I know it is difficult to do anything that requires concentration but maybe you could handle one class. I am an Executive Director or what is known by some as a CEO of a non-profit housing development agency. I am finding it very difficult to do my job, so I totally understand your frustration. Luckily I have some work I can do at home, so when I am having my "ok" moments I can hope on a computer and get some work done.

Paul, I had a small bowel movement study back 2005 or maybe it was 2007. Anywho....yes you have to drink stuff and then have x-rays...drink more...have more x-rays. I can't remember exactly what it all entailed. Unfortunately by the time the doctor got around to performing the test I was in one of my "good phases" and they only found something minor (can't remember what) but again that doc wrote it off to IBS. I remember him mentioning that his partner disagreed. I guess I should have insisted on seeing him. But honestly I just wanted to get on with my life. I had become so accustomed to pain and the run for life to the bathroom bit that I built my life around it and assumed it was just they way things would be. Little did I know that I would end up with the debilitating pain that I am now enduring. I am sorry about how this has impacted your life, especially you and your children's relationship. Both of my kids are grown now, but one is at home going to college. Even he crawls up in bed with me and tells me all the time that he hopes that I get better soon. Still breaks my heart, even though he is 19. Especially when he sees me in a lot of pain and I can see him holding back tears. It is crushing. I can't imagine having little ones going through this with me. I truly hope that you get some answers very soon!
 
Paul, I think your dad was visiting you to let you know everything is going to be ok and felt you needed a hug! It was his way of letting you know that even though he is not here that he feels your pain and is still by your side. Remember positive thoughts (I know it is hard) but it is key to getting healthy.
 
Gabi our stories are so similar. The NHS is just awful. I'm waiting 4m for a GI appt and I've been waiting 9 months so far for an MRI :(

I don't see the logic behind giving you entocort when they don't know where the inflammation is coming from. Entocort only treats terminal ileum and large bowel and remains there... That's why there's less side effects. So if the inflammation is anywhere in your small bowel or above, it's not going to be effective. Pred will treat inflammation anywhere. Passing the buck is something I am very familiar with. It is incredibly frustrating. To be honest, private healthcare isn't much better. You see the same doctors as you do on the NHS, the only benefit is it's quicker, cleaner and more comfortable/personal. I wouldn't bet on getting a diagnosis by going private though.

Cat sorry things were normal so you can't get a diagnosis. What about small bowel investigation?
 
Thanks guys, had a good cry this evening with the wife. Felt like I should of visited dads grave today but instead got a haircut (I've been stuck inside for 3 months and was in desperate need) now regretting it, will try and crawl to the cemetery tomoz. Guess I'm worried about the dreaded cancer word although the doc can't feel any masses or seen anything untoward during the endoscopy. What type of things can a small bowel study pickup then? Is it just crohns ?
 
I slept all day after getting my test results. I'm not particularly happy to be awake right now. don't have to remember how sick I am when I'm asleep.
 
Ugggg! Bad day. Was running to the bathroom all day. Had to take my doluclax at bed time. Well it is now 3am and I am clear and still going. I don't even start prep for 12 more hours. Trying to keep hydrated but super nauseous. Time for a zofran. How and the heck am I going to make it through prep.
 
Ok I've made my mind up. I'm going back to a&e on Saturday or Sunday. Gona get some personal things cleared up and then go if I can make it that long. My GIs secretary says that's the quickest way to be seen and she said treatment options are now remicade or surgery.
I refuse to sit and waste away my body and career waiting on the NHS. However the fear is that they will tell me to go home but legally I hear thy I had to agree with that? Is this true? So if it is true I won't go home and hopefully get some pain killers and a half a nights sleep plus I know I could be doing with some IV fluids as I'm very dehydrated. Even my GP said thy but of course done nothing which was great.
Quick question does anyone get skin tags I've two on my lips and they look awful- according to YouTube you can remove them yourself but could this not cause serious scaring!?
I hope everyone else is doing well and refusing to lie down under this horrible disease diagnosed or not. Time to arm up soilders and get ready for war.
P.S. I can't blame my moods on the steriods any more so sorry lol!!
 
Thanks everyone. lsgs, I've had small bowel tests in the past - specifically, I had a pill cam done about 3 years ago. It was totally normal. And since the bleeding was apparently just caused by hemmies, I'm not going to bother with more tests right now (can't really afford them either). Just going to try to get things back under control again with meds.

I do think it's a little scary that my GI removed 3 polyps. I didn't have any polyps 3 years ago when I had my first colonoscopy. My grandfather (mother's father) died of colon cancer when he was fairly young, like 60 I think? So that makes me worry a bit. GI is going to analyze the polyps but he doesn't think they're pre-cancerous.

Reflection, how's prep going? Hope you're doing okay. Take Zofran as needed to keep the nausea in check. I got super nauseous after drinking my first cup of prep so I feel for you! I think I took 3 or 4 Zofrans total on my prep day.

Gabi, I hope the hospital can get you to feeling a lot better when you go. If it were me and my choices were Remicade or surgery, I'd take the Remicade. Just my opinion, but you've only got so much bowel, so avoid cutting parts of it out if you can avoid it! If you can't avoid it (for example, if you've got scar tissue), then surgery probably is the best route. I hope you can avoid surgery though. Keep us posted on what happens and how you're doing!

Chickadee, I'll ask my GI about staining them for mast cells if the biopsies come back normal - thanks for the idea!

How's everyone else today? I'm okay, recovering pretty well after my scope. Some abdo pains, but not bad. With the biopsies and the polyp removals, I was expecting pain, and this isn't as bad as I was expecting. I'm just resting up and relaxing today.
 
Cat - sorry your scope didnt offer up any answers.. but it was clearly worth it just to get the polyps removed if anything else! (I know they are likely to be fine.. but just in case, its best to remove them)
Did your GI advise of a change in medication?

Paul - I agree with reflection, that your dream was likely to be a hug of support :) when are you having a small bowel study?

Gabi - I am so frustrated for you.. just when we all thought you were finally getting somewhere, your doctor closes off. I hope it goes well if you do decide to go to a&e..

Lsgs - im a bit behind on posts - how are you doing lately? I agree with you that the only benefit to private health is to be seen quicker, and like you say - its the same doctors anyway! Lol
 
Cat-a-Tonic said:
Reflection, how's prep going? Hope you're doing okay. Take Zofran as needed to keep the nausea in check. I got super nauseous after drinking my first cup of prep so I feel for you! I think I took 3 or 4 Zofrans total on my pre
Click to expand...

Hi Cat, glad to hear you aren't feeling too awful today. Take it easy and get some rest. I haven't started my prep yet. I start at 3pm today (pst). I have had a lot of diarrhea since yesterday morning. Trying to drink lots of fluids. I have had two zofran since midnight. Can't remember how often I can take. Hope this pass before I drink the prep. Doubt it will since my nausea seems to always be worse on an empty stomach. At least the pain is tolerable.

Hope everyone else is having an okay day. I would like to elevate that to great but I know I haven't had a great day in some time.
 
I'm doing okay. I'm stopped up a little, and it hurts. My body is totally not working the way it should. I wish the doctor would call already. I have to stop looking at my blood test results, because they seriously freak me out. my transferrin saturation is 6 (lowest normal is 11), and I've read that low transferrin isn't a good thing at all. grr call me doctor!!
 
Oh dear guys I think there is no choice but a&e I've the shakes really bad pain is awful nausea awful. I'm just so afraid of going in again (8th time in 16months) being rehydrated pumped full of pain killers then sent home and told I will be seen soon. This is what happens every time. How can I keep doing this!? They say the first sign of insanity is doing the same thig over and over and expecting different results!! I know they will keep me because my bloods are so bad and I'm so dehydrated does this not prove that I need treatment now!?
I really thought my doctor had more sense than to put me on those steriods for a week then take me straight of them- how stupid. I seem to find her in moods- one min she will be so proactive and then the next just shut off. She even mentioned CBT again and I'm sorry but CBT won't cure inflammation.
I don't know how some doctors sleep at night.
 
call your doctor and leave a message with the answering service that you're going to the hospital? don't let them discharge you until they give you tests? *hugs* :/

Oh ... my former GI told me to go to psychotherapy as well. what a crock.
 
Let prep begin. First dose down. Have had a headache all day and about 7 trips to the pot. That was before taking the suprep. Been drinking tons of gatorade, chicken broth etc. Hope the headache doesn't get worse.
 
Reflection, did you have your scopes? How did it go? I hope you get some answers!

Gabi, did you go to A&E? I hope they admitted you and are doing something to actually help. Please update us when you are able to!

How's everyone else doing? Carrie, Bozzy, lsgs - how are you guys doing today?

I'm having some pain today. I know I'm full of tiny wounds, since they took a bunch of biopsies and also removed 3 polyps. I tried carrying a laundry basket up the stairs yesterday, and the pain got worse. It's somewhat better today, but I'm trying to take it really easy so as not to exacerbate it again. As you guys know that's not easy for me! I wanted to go to the gym today, but that's out until I'm feeling better. So I'm going to try to rest up over the long weekend. (But I'll be back in the gym the second I don't feel so painful!)

I hope everyone else has a nice long weekend too (for the Brits, is Labor day a holiday for you as well?). Big hugs to all!
 
Thanks for asking bozzy and cat. If I'm honest, I'm doing pretty bad. Constant pain, waking up during the night, constantly on painkillers, diarrhoea 10 times a day, passing mucus, blood, undigested food. Most nights I'm up from 2am to 6am. Off work today. It's a real mess!! Luckily when I felt things deteriorating I booked a GP appointment so I'm going on Monday, I'll probably get fobbed off but hey. I'm quite keen to change my MRI to a pillcam as the head radiographer at my hospital told me MRIs suck at diagnosing IBD... But the pillcam costs more so no doubt the NHS won't cough up!

Reflection how were the scopes?

Gabi how are you? Did you go to A&E?
 
Since I don't have a diagnosis, I'm not sure where to post this random thought, but here seems like it might be the most appropriate place.

WHAT just came OUT of me?!

I'm sure I'm not the only one here who's wondered this from time to time, but good lord, my stomach's doing some strange things.

I wouldn't mind if it didn't hurt! Thank god my colonoscopy is (finally) almost here -- I'm just hoping it'll help me figure out what's wrong. It'd be nice to not be, like, afraid of using the restroom because of what will show up next. EWWWW.
 
lsgs, good luck with the GP! I haven't heard that about MRIs but that makes me curious - I know a couple radiology techs, so I think I might ask them their opinion of MRIs and IBD. Anyway, I'm getting off-track already. I wish you lots of luck and I hope you can convince one of your doctors to do the pill cam. (Although after Carrie's experience, I'd recommend you do the patency capsule first to make sure it doesn't get stuck!) That sucks that you're up half the night so often, I know that has to be miserable. I hope your GP can give you something, whether it's more tests or back on steroids or whatever to get you feeling better and/or to get you closer to some answers. Keep us posted on how Monday goes!

Hi Bureaucratic, yes unfortunately a lot of strange things can come out of us! Nothing is TMI on here either - and you've got me curious now, could you describe what came out of you? Blood, mucus, undigested food, undigested tablets, something else? I can remember when I first got sick, I was trying to eat really healthy and was having a lot of spinach salads just before I got ill. When I finally started feeling somewhat better after my first flare, I tried eating spinach salads again, but to my surprise I started pooing green! That had never happened before and it freaked me out. Little did I know that was only the tip of the iceberg. :p When is your colonoscopy? I wish you lots of luck with it, please keep us posted on how it goes.
 
Cat-aTonic -- oh lordy. I'll have a go at describing. It's ... graphic.

The stool was pretty normal looking stool itself, but there were patches of darker, mucus-y fuzzy gunk scattered all over the outside -- some pea-sized globs, some smaller. The best way I can describe the appearance is like ... I don't know, brown pond scum? It seriously looked like it was growing in patches on the stool. Friggin' nasty.

Just to make things more confusing and up the general ick factor, there was a big long glob of (relatively) normal looking clear-white-mucus too. The other stuff was probably mucus, I think, but maybe from higher up in the colon? (Which might be why it was such a dark color?)

At least it wasn't too surprising -- I'd been seeing some darker mucus-looking yuck both with and without movements the past couple days, plus the usual aches and cramps.

My colonoscopy is this coming Thursday. Hopefully the doctor can clue me in after that -- alternatively, I guess I'm just going to get used to an unexplained rainbow of what-the-heck in the toilet from day to day. Bahahaha.
 
Well I am in pain. I ate soup and rice cakes a little while ago, and now I'm having terrible pain near my navel. Boo.

I have had that brown nasty gel stool too. For me it usually comes out in its own little pile.. I sent some in with a stool sample, but no one said anything. I also get whitish yellow stuff that can be stringy. I think it is mucus.

Ugh this pain can stop anytime now. I was really bloated, and my weight went up like 6.5 pounds. Then today I had to pee a million times and lost like 4.5 of it. So weird.
 
Hi Ladies.
Sorry I haven't checked in. Been trying to relax and not do much. My daughter came home to help so we have been laying around watching movies. I hope everyone is doing ok and having a nice weekend.

As far as the scope. Everything looked good until she got up to the terminal ileum. I remember at one point during the scope I tried to get up and was fighting hard. I remember actually being held down. I have had different procedures and have never remembered a thing. Doc said I was very combative when she tried to look in the terminal ileum. Sounded like she didn't really get a good look at it, not sure though. She said she took like eight biopsies. I am now on a dairy free, gulten free, low residue diet. Seems I can eat, chicken, white rice, and potatoes. LOL...not much else crosses between the three. Not sure why she has me on gulten free since I was tested for celiac in 2010 and it was negative. She did take more blood and said she was doing a specific test for Crohn's and UC. Not sure what test that would be. Something that couldn't be done in our labs but had to be sent out to a specialist.

On a somewhat good note. I haven't pooped since the procedure. On the other hand I hurt like hell this morning. Same spot, under right ribs an straight through to back. I just want to scream.

Again, I hope you are feeling ok today. Hugzzzz.
 
Reflection.. sorry you are in pain. Hopefully your reaction during the scope, but hopefully they may get some answers from the biopsies.. all being well - if that happens.. you can have some meds. Then once your guts are better, you could start reintroducing gluten foods etc.. good luck! :) xx

Gabi - thinking about you.. hope you are ok xx

Lsgs - how are you feeling today?

Cat - when do you get your biopsy results??

As for me.. guts are still doing great.. I actually had a bm that looked like a cigar! Haha I feel a little proud ;) I know the sulfasalazine was given for my joints.. but could it be helping my bowels too?
 
bozzylozzy said:
Reflection.. sorry you are in pain. Hopefully your reaction during the scope, but hopefully they may get some answers from the biopsies.. all being well - if that happens.. you can have some meds. Then once your guts are better, you could start reintroducing gluten foods etc.. good luck! :) xx

Gabi - thinking about you.. hope you are ok xx

Lsgs - how are you feeling today?

Cat - when do you get your biopsy results??

As for me.. guts are still doing great.. I actually had a bm that looked like a cigar! Haha I feel a little proud ;) I know the sulfasalazine was given for my joints.. but could it be helping my bowels too?
Click to expand...

Yeah for the cigar!!! My hips are killing me again. I see you have joint pain bozzy. Is this part of Crohn's? My hip pain comes and goes. Along with foot pain
 
Oh yeah I have joint pain.. funny how my joints started hurting really bad when I had my "flare" in 2011.. it affects my knees mainly.. but I do get it in my hips too. As far as im aware - joint pain is related to IBD. It sucks :(
If I miss a couple of dosages.. my joints start aching straight away.

Is it just your hips that are affected?
 
The shooting pains dont sound fun :(
I get it in my feet too.. I cant wear high heels, it just causes too much hassle for my ankles. Plus I have to wear arched insoles because I have flat feet too.

Oh the joys!
 
Thanks to those who asked how I am! I'm deteriorating at a rapid rate. I don't know if any of you guys get this, but my appetite tends to get so bad the thought of food makes me feel unwell. I get so upset as it reminds me of my sickest point in hospital. I have lost 3lb this week. I know I said I wanted to lose weight, but not like this!

The pain is constant, it gets worse at times and better at times but it's always there. My joints are absolutely screwed too.

Bozzy, I know my GI was going to prescribe me sulfasalazine at one point for IBD so it must be a gut drug!
 

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