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UnXmas said:
Ann Morgan - what was it that you found that told you you don't have Crohn's? Did you think you had Crohn's before? Sorry, I'm confused too - I think all those test results and Internet articles would confuse anyone.

My Urologist had ordered a CT scan for me to check my abdomen and kidneys. I saw some of the test results and something was mentioned on there about the possibility of me havig terminal ileitis. I see my Urologist this coming Monday.

Also, I recently saw my new GI doctor for a follow-up visit. I asked him about Bile Malabsorption and I said that I thought I had it. I don't like my new GI so I probaby won't be seeing him again. During our last visit he did not even make it sound like I EVER had to come back unless my symptoms changed. My old GI had me come in once a year so he could follow-up with me on how I was feeling and to renew my colon prescriptions. My new doc did a colonoscpy , he said it was normal, and I was to discontinue all of my colon meds. I think he just makes his money from doing a lot of colonoscopies ? I don't trust him. Thanks for listening.

I did not really answer your question ?
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Hi all..I'm happy to say I am feeling better than I have in a while. Getting housework done...feel like a person again. Had my Remi Monday but also am on a self started course of prednisone . My Remi nurse was not the least bit surprised when I told her I'd had enough of the pain and just started prednisone. She said lots of her "Chronnies" do just that when they reach the end of their rope. She agreed the pain meds do nothing to treat the cause where as prednisone targets the swelling and inflammation that causes all the pain.
I am on the pain patch Fentynal..hydrocodone for breakthrough pain ...and still wasn't getting any relief . My problem isn't about gut pain as much though as everything else and I truly mean just that ! Turning over in bed was so painful and just lying still was too !! Ughhh my feet still are my main problem..I don't believe there's any hope for those puppies.
My GI at last visit sort of upset me when he hinted that depression may be more my problem than my Crohns . Hmmmm Did starting prednisone and getting almost immediate relief from the pain sound like depression ?? I think NOT.
Ann Morgan...at one point my GI also stopped my colon meds because my scope was so great . Then lo and behold a few months down the road..here came theeee worst flare of my life so far. Resulted in a month in the hospital....back on Imuran and Remicade . Just saying...if you do go off the meds be very very vigil for symptoms sneaking back. Sorry for the novel...everybody have a good weekend and God Bless
 
It seems that the only food that is safe for me to eat is anything that I prepare at home. Going out to eat or eating food at other places is never safe for me. Well, maybe a plain bagel. I was stupid and bought two frozen dinners at the grocery store the other day. Yeah, I ate one yesterday and had diarrhea at least three times from the frozen dinner. So what did I do today, I ate the other frozen dinner......with the same results. I don't know why I do that sometimes, eat stuff that I know is going to make me have diarrhea. Well, at least I was at home yesterday and today. When I am out and about and going to doctors appointments and activities or errands I never eat while I am gone. I get all of my things taken care of and then I will wait until I get home to eat. I had major changes in my symptoms in May/June and I lost 20 pounds. Then later on I lost 10 more. My appetite changed drastically, I just had no appetite at all. Recently I was on Prednisolone for 6 days ( I had a terribly bad sore throat, which ended up with laryngitis and a cough and blowing my nose and, well, green snot. During the time I was on the Prednisolone I had a very, very good appetite ( of course ). I was eating the whole time I was taking the Prednisolone that the Emergency Room people prescribed for me ( plus Hydrocodone and Lidocaine throat gargle stuff ). ( I did not have the green snot until four days later ad then my Primary Care Physician gave me antibiotics ). Anyhow, sorry about mentioning green snot ? So, the Prednisolone is all gone, but I still have the appetite ! I don't want to gain back the 30 pounds I lost because I am obese. My Endocrinologist even said one day that she would like to see me lost 20 more pounds ! I know I have already gained 4 pounds since being on the Prednisolone. I go see my Urologist on Monday and I am hating to think what the scale will say. OMG, I have been eating cupcakes and brownies and donuts from Circle K. Say What ! Wow. PS: I have stayed home for an entire week because I completely lost my voice due to the laryngitis. I still have a cough and I still blow my nose. I am staying home to save my voice for next week. I cancelled all my activities/appointments for this past entire week. When I say I lost my voice, I mean I could not talk at all ! I even had to have my sister call someone for me because I could not talk ! Have a great Thanksgiving and stay healthy everyone. :)
 
I have a question about terminal ileitis but I did not know what section to post it in ? I recently had a CT scan of my abdomen and pelvis. My Urologist was checking a cyst on my right kidney that is 1cm. The new scan says the cyst appear somewhat more thick-walled. But then below these results the report mentions my ileum. It says: Wall thickening and inflammatory change involving the terminal ileum suggesting terminal ileitis. I was diagnosed with Ulcerative Colitis in 2006. I just had a colonoscopy in August of this year. I know that a colonoscopy and an endoscopy cannot see the ileum. I hate my new GI doctor, so if I needed to see a GI doctor about something on this new report I would have to choose a new one. I really don't need any more things wrong with me. I already have a long list of physical problems and mental health issues that I am trying to monitor on a regular basis. So, can anyone tell me about terminal ileitis and what tests they have had to see the terminal ileum ? Thanks for listening.
 
Sorry to hear that, Ann. My GI was able to reach the ileum with colonoscopy. My impression is that's not unusual, because that's how they get the biopsies to check for granulomas (for CD diagnosis). Otherwise, I'm not sure what they'd do other than CT/MRE. I have ileal involvement with my CD but nothing in the large bowel. I'm not sure how that fits with UC specifically.
 
I almost want to go back to my old Gastroenterologist and just pay cash for everything. He is not on my new insurance plan. He was a good doctor and I trusted him. I mean, you really have to trust someone who is going to put a scope up your ass : - 0 .
His staff was so good too. They were professional and knowledgeable. One time I had to fill out some paperwork for a free-medication application. One of the gals there helped me with the application and even faxed the paperwork over to the drug manufacturer. They all know what they are doing there. I suppose that wouldn't be right to go behind my current doctors back and see another doctor ? But I do know, for sure, I won't be returning to my new GI doctor that I just started seeing this year ( and the one that did my colonoscopy ). I am tired. Too many decisions to make. : - ) .
 
doc let me have an overnight pass from hospital - back in at 8am to see my consultant and find out what next treatment is. Humira is a failure now. Think I'm starting Infliximab. Not gonna read dany patient stories about it - I'm going in with the psych that it'll work and I'll get into remission soon.

and i got offered a new job which is a relief :) so not all bad
 
Lilac: It sounds like you have the right attitude about your trearment ! Glad to hear about your new job too ! Have a great week ! I have a new cell phone and I have no idea why this print is so big . : - 0
 
Been awhile since I've been on here. Things were going great - then I started having pain, messed up BM'S, horrible reflux after eating anything and then I was throwing up acidic foam. The last few days I dropped all solid foods and kept food to a minimum to heal up somewhat. It made a big difference. I was eating too much in a sitting, I think my stomach is very slow to empty or something. Still doing good though. I am functioning, working, volunteering and having a bit of a social life. Definitely starting to manage this thing for the time being.
 
I'm so over this (insert bad word) disease! I had a little break for a month not from symptoms but from running to specialists. Well that tiny break is over and I'm back in the game full speed. This is not a life.
 
I am finally improving. Got a colonoscopy yesterday and chatted with doctor. Turns out it was a bacteria giving me all that bathroom trouble. He gave me olestyr and it helped PLENTY after just one dose.

The only thing that hasn't improved yet is my mega-exhaustion, but hopefully once my appetite returns a bit more, that will help.

Oh yeah and doctor said my crohns isn't active right now, so the remicade is working, at least.
 
BlackButterflies said:
Been awhile since I've been on here. Things were going great - then...
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Funny how we don't say how we're doing until something happens, eh? I'm in the same boat... haven't posted anything for a while because things have been going okay, but now...

Today I'm back to feeling frustrated. Been having a little bit of back pain lately and then Tuesday morning I passed a kidney stone. Where there's one, there's typically more, right? Hasn't been too long since my last run of scans that I had to drink all kinds of contrast and now I have the joy of drinking more this afternoon. Always something, it seems...
 
Still frustrated but pleasantly surprised when the tech looked over my chart with a surprised look on her face, "Hu... wonder why they have you drinking contrast?". Didn't drink anything but a whole bunch of water. Now the waiting game once again for the typical response of not finding anything and no one knowing what happened.
 
I finally, really have gained some weight. Was weighed at the doctors' yesterday and for once didn't have to worry about it.

Bad side: I feel nauseous a lot of the time. I never used to get this symptom. I've come off the two medications that could possibly have been causing it, so I know it's not a side effect. It's going to make gaining weight even more impossible if it carries on! But then sometimes it's just gone: I ate a battered sausage and chips from the fish and chip shop yesterday, and liked it and felt fine. Very full afterwards, but not nauseous. But this morning it's back again. I've just taken the three different antiemetics that we had in the house, but it's still there and my stomach's been sore the last few days as well. :(
 
Holy H*ll !

I was sick recently with a sore throat, laryngitis ( I actually totally lost my voice ), a cough, blowing my nose ( with green snot ). Sorry for the gross description. Anyhow, my Primary Care Physician prescribed an antibiotic for me. I have been having diarrhea every day since being prescribed the antibiotic ! I am so mad now. I had been having some success recently at keeping my colon happy. Well, my colon is not so happy any longer. The first antibiotic I was on I took for 7 days. I had diarrhea for 5 of those 7 days. Then my doctor gave me a different antibiotic. The second antibiotic gave me diarrhea, I took this antibiotic for three days. So, that is ten days of antibiotics and that is usually the number of days they give you antibiotics for, but my doctor gave me seven days worth of medication the first time around, and then seven days of medication the second time around. That would be 14 days of antibiotics. Well, as of Thursday morning, November 20th, I am not taking the antibiotics any longer. I have diarrhea off and on all day long now. I am a responsible person, so I will call my doctor on Monday and tell him that I will no longer be taking any more antibiotics because I am getting sick from them. My sore throat is gone, the laryngitis is gone, the cough, and the green snot is gone. I was even wearing a surgical mask around for a while because I did not want to cough on anyone and I certainly did not want to get additional germs from other people. Now I am trying to get my colon back on track, I don't know how long that will take but I am pretty mad right now about the whole antibiotic / diarrhea thing. I had diarrhea for 17 years, then this May I had horrible constipation ! So, I started to have some success in not having the severe constipation and not have the terrible diarrhea. I was having some control of it. I will now know that if a doctor ever asks me about medication allergies that I will absolutely mention that antibiotics give me bad diarrhea and I won't take them no matter what !
 
I have been feeling like crap since my Remicade infusion on November 3rd.Extreme fatigue,joint pain and depression.I usually feel fatigued after my infusion for a day or three,not weeks! After previous infusions I have been feeling better by now.I'm sure the waning daylight has something to do with feeling sad,but the fatigue and joint pain?

My GI is usually great with returning calls,not this time.I have been going to work and directly to bed.I've lost all the weight I gained from feeling better since starting Remicade in July.This was my 5th dose,my second maintenance infusion.

My GI did return my call,eventually.I know I am just one of many patients,but....WTF! Not even a nurse called me for two weeks! My infusion was 20 days ago.

My GI wants me to have blood work done to see if I am building up anti bodies to Remicade. I have not had any blood work done since the pre-infusion testing they do in July. Hurry up and wait.

Speaking of hurry up and wait...why do they ask for a cell/mobile # and proceed to call your homes land line and leave a message that prolongs having anything scheduled by DAYS?!? On a Friday even,so I have to wait through the weekend and start playing phone tag with them on Monday!

I'm glad stress isn't bad for us,oh wait....:ybatty::(:ybatty:
 
Dave: Your story reminded me of one of my own doctor / phone experiences. In 2009 I had a routine blood test for my Primary Care Physician. I played phone tag with the office gal about the test results. The doctors office had my home phone number, my cell phone number and my work phone number. I worked in an office and sat at a desk all day long right by my telephone. One day I get a notice that I have a registered letter waiting for me at the Post Office. I had to go inside the Post Office to pick up the letter. It was a registered letter sent to me from my doctors office ! They said they had not been able to get ahold of me and to call them immediately ! I think it cost over 6 dollars for them to send me this letter ? I called their office and finally got someone to talk to me. The gal told me that my hemoglobin was extremely low and that I needed a blood transfusion and that I was to go to the Emergency Room as soon as possible ! I was tired all the time anyhow, so I did not think it was a life of death situation. But after work I went home to feed my cats and then went to the ER. I was admitted to the hospital overnight and was given two units of blood. After the two units of blood, my hemoglobin was at an acceptable level. I still can't believe that the doctors office had to resort to sending me a registered letter. They had all three of my phone numbers and they had my permission to call me at work. I don't know if I will ever be able to understand how doctors offices operate. Now doctors have "portals" online and supposedly you can log into the portal and locate your blood test results and medication list and things of that nature. But some doctors offices still just have an office gal call you with your blood test results or your x-ray results. Sorry this is so long. Have a great week everyone.
 
Hi Ann Morgan

I do have to give my GI and staff the benefit of the doubt. This is the first time they delayed so long. When I call them tomorrow I will say my cell is the best way to get an immediate response.

I am anxious to see what the blood work says. I am feeling better,but still very fatigued. The mood swings threw me for a loop.
 
Not bad, thank you. (In answer to the question ;) )

I am very excitedly planning a trip to Peru in April next year. I am a bit nervous, too, as I have just been filling out answers to the questions on the booking form about my medical condition and its effects on travel and my dietary requirements.
 
I can't tell if I am getting Crohn's pains or if I am hungry.
I should be thankful that I am relatively somewhat healthy right now but I am so tired of my life! I just want someone to stop talking about themselves and stop asking me for advice on their own dramatic life and ask me how I am doing. You want to know the answer? I am doing awful. I am so short circuited and frustrated right now that I can't think clearly. My abdomen has been hurting so much this last week, I want to throw up every time I stand up or sit down. I am dealing with severe bloating on top of it so I put off eating for as long as I can. I just want my life fixed.
 
afidz said:
! I just want someone to stop talking about themselves and stop asking me for advice on their own dramatic life and ask me how I am doing.
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I don't mean anyone on here, in my personal life. Hope that didn't offend anyone
 
afidz said:
I don't mean anyone on here, in my personal life. Hope that didn't offend anyone
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no offense taken,afidz. We all need to vent.

I like your new photo for your avitar.

One year ago today I brought myself to the ER.I would end up having a resection in my jejunum for a close to complete blockage.My introduction to CD.I guess I am feeling reflective today.The resection was done on the 25th of November,which is tomorrow.The 24th was the day I couldn't take the pain anymore and didn't know what was happening.I thought I'd been having bouts of food poisoning! I'm hoping I will make it through tomorrow and be able to say I made it a year(so far)with no new obstructions or stricturing,but today is the day the whole CD journey began for me.

I am reflecting on Thanksgiving week last year and quite thankful I am not in the hospital! I feel pretty fortunate today.

I care how you feel afidz,and I know I am not the only crohnie here who does.Keep the faith! :ghug:
 
Avidz: great picture. I am going out of town for one week for Christmas. I don' t know what I am going to eat and how many times I will have to run to the bathroom. I rarely travel. I am going to see my sister. She doesn't understand that when I say I need to go to the bathroom that I mean NOW.......not 10 seconds from now....but NOW.!!!# I hope you start feeling better soon. Have a great week.
 
Ok, recently I was prescribed antibiotis. They are really giving me terrible diarrhea.
I took my ten days of pills and that was that. I stayed home for 3 days. Today I had 6 "errands" to run.
Errand # 4 was the Post Office.
I was there using the self-service machine when all of a sudden I was cramping up. I had to use a bathroom ! Post Offices have no public restrooms. OMG I was actually able to drive across the street to a Subway Store. The sandwich guy could see the desperation on my face. Eek, I needed a key unlocK the bathroom door. I wear large, long Poise pads every day just in case these things happen. If I start to have an accident the diarrhea goes onto / into the pad. I did not have to go home and nothing got on my clothes. I did not even buy anything at Subway. I want to thank the folks at Subway for being so kind. I would also like to thanK the folks at the Verizon store, they let me use their restroom when I was very desperate too. : - )
 
You need to be terribly careful with antibiotics. They all have diarrhea as a possible side effect but some are worse than others. Every time that you are prescribed antibiotics you MUST remind your doctor/specialist/surgeon that you have an IBD and that he/she needs to take this into account.
 
Susan2 said:
You need to be terribly careful with antibiotics. They all have diarrhea as a possible side effect but some are worse than others. Every time that you are prescribed antibiotics you MUST remind your doctor/specialist/surgeon that you have an IBD and that he/she needs to take this into account.
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Thanks for the information. I did not know that antibiotics caused diarrhea until I got this recent prescription.

Every single one of my doctors gets an extensive list of my medications, health conditions and surgeries when I have my new patient visit. My lists are very detailed and I keep them in my purse at all times, just in case I need to go to the Emergency Room. When I see my Specialist doctors on a regular basis I tell them all about any health issues that I am having outside of their specialty. So I tell the doctors all about everything, whether they want to know or not !

I had some major changes in May in my Ulcerative Colitis symptoms. I lost 20 pounds in 7 weeks. Then later on I lost 10 more pounds. I was not trying to lose weight at all. I had a lack of appetite either due to the symptom changes or maybe it was psychological. ( I had lost 60 pounds back in 2006 and it was psychological ). Anyhow, I have been telling all of my Specialists that I have lost 30 pounds and I wasn't trying to lose weight. Two of my Specialists are happy about my weight loss because I am obese. I keep try to get it into their thick skulls that I was not trying to lose weight, yet I lost 20 pounds in 7 weeks back in May / June. I like my Endocrinologist a lot, but she told me she would like to see me lose 20 more pounds. I have lost 30 pounds and I don't feel any better at all - - believe it or not. Now with my diarrhea issues because of the antibiotics, I am sure I will have no problem losing at least ten more pounds. Because of the diarrhea I probably will not want to eat anything because anything that comes out of my body will be terrible diarrhea. Hey, I will hit that 20 pound mark in no time !!! I was 200 pounds and now I am 170. I have had trouble with my weight for 30 years. 4 1/2 years ago I was at a very comfortable weight of about 155. I felt quite good at that weight. Anyhow, I am so mad about this antibiotic thing. The labels say that I can have diarrhea for weeks or months after I have taken the medication ! SAY WHAT !!!!!!!!! I am going out of town for Christmas for eight days. That means airports and airplanes and riding in other peoples cars where I don't have control to where and when I can use a restroom, and then what will I eat when I am gone. EVERYTHING is giving me diarrhea NOW. I hope this diarrhea from the antibiotics calms down because my Christmas trip or else I will be miserable the whole time I am visiting my sister. Ugh. Well, I have not had any green snot since discontinuing the antibiotics after taking them for ten days, so I think I will be okay. I started to get sick THREE WEEKS ago. I don't have the sore throat at all or the laryngitis, but I still do not feel like my voice is back to normal yet. I am still blowing my nose a bit but I think that is because of the weather. And I cough every once in a while.

Well, I better end this post now. All of my posts are long. :lol:
 
neohic said:
... Now the waiting game once again for the typical response of not finding anything and no one knowing what happened.
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Had the typical "watch everyone have a nice time" Thanksgiving yesterday... so that was nice. Got word back on Wednesday from my doctor on the latest scan. I've got gallstones. :ymad: Always something...
 
neohic said:
Had the typical "watch everyone have a nice time" Thanksgiving yesterday... so that was nice. Got word back on Wednesday from my doctor on the latest scan. I've got gallstones. :ymad: Always something...
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Hi. I was really sick for about 9 months in 1994. From what I can remember, I visited my Primary Care Physician ( some old giy, I hate old doctors .) I had an Upper GI. The results were normal. I walked out of the doctors office where they basically told me to just take antiacids. SAY WHAT. In 1995 my insurance company changed and I got a new PCP ( NOT an old guy ! ) When I explained my symptoms to my new doctor she knew right away what to do. I had an ultrasound. They found gallstones. One month later a General Surgeon took my gallbladder out. I felt better the next day. It is very unfortunate that I had to be sick for several months before I could get the proper diagnosis ! I never pick an old guy doctor anymore ! ( I apologize to any GOOD old guy doctors. ) I hope you feel better after your gallbladder surgery, I did. :)
 
Dear neo: I was alone for Thanksgiving and my Thanksgiving Dinner was a Root Beer float :). It was delicious at the time, but today I paid the price ( it was good that I was at home all day long today. ). Ugh, I recently had to take antibiotics. I had NO IDEA that could cause diarrhea in folks with IBD ! So now I am afraid to go out of my apartment.....ALMOST had two accidents outside of my apartment recently. We know how you feel because we have all felt it before ourselves. Keep in touch.
 
And the award for the most insensitive thing someone can say goes to...

I met up with some friends today. They all know what I've been thrugh with Crohn's and my hernia. But they brought along someone new. As I was introduced "oh my gosh congratulations! " I told her i wasn't pregnant. I dais I have serious health issues that make my abdomen look the way it does. To me, that is when I expect the conversation to move on. "I'm sorry for assuming blah blah" . Nope. Not this little ray of sunshine!
I quote
" are you serious or are you just f!%&in with me? I can't tell because you really look like you are"

I told her I was being serious. I said I had just ate and was boated so my abdomen looked bigger than it does normally. She then proceeded to explain how she could relate because her aunt has the same problem. "Her stomach muffin tops just like yours"

who is raising these morons?
 
afidz said:
And the award for the most insensitive thing someone can say goes to...

I met up with some friends today. They all know what I've been thrugh with Crohn's and my hernia. But they brought along someone new. As I was introduced "oh my gosh congratulations! " I told her i wasn't pregnant. I dais I have serious health issues that make my abdomen look the way it does. To me, that is when I expect the conversation to move on. "I'm sorry for assuming blah blah" . Nope. Not this little ray of sunshine!
I quote
" are you serious or are you just f!%&in with me? I can't tell because you really look like you are"

I told her I was being serious. I said I had just ate and was boated so my abdomen looked bigger than it does normally. She then proceeded to explain how she could relate because her aunt has the same problem. "Her stomach muffin tops just like yours"

who is raising these morons?
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I am sending many hugs your way !!!!!!!!!!!!!!!!
 
afidz,

I've read numerous of your posts. You're helpful, comforting and interesting...which is probably more than can be said for your new acquaintance.

Thanks for your efforts, HUGS
 
I was asked,again,if crohn's is contagious. I think I met a relative of your new buddy afidz.:ywow:
 
dave13 said:
I was asked,again,if crohn's is contagious. I think I met a relative of your new buddy afidz.:ywow:
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When we had a family meeting to tell the other kids about their sister's diagnosis, it was the first thing I had to tell them, LOL, that it wasn't contagious. The relief in the room was palpable - the expressions were priceless. :ylol2: It's a little funny from kids... but adults?:voodoo:
 
Pilgrim said:
When we had a family meeting to tell the other kids about their sister's diagnosis, it was the first thing I had to tell them, LOL, that it wasn't contagious. The relief in the room was palpable - the expressions were priceless. :ylol2: It's a little funny from kids... but adults?:voodoo:
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I try to see it as a legitimate question.I know I knew little about CD before being diagnosed,but,...geeez...I suppose the auto immune part spooks them. I just feel so insulted. I'm trying to take the high road here but...I'll stop a rant before it gets going.Rants can be contagious,don't you know. :ylol2:
 
Ann Morgan - I've taken antibiotics a few times since getting ill, and they gave me severe diarrhoea too (prior to me having an ileostomy anyway). For me it stopped a couple of days after I finished taking them. It's rare for it to go on weeks or months, but they always have to include worst case scenarios on the info. leaflets and websites of medications.
 
How am I feeling ? I am confused about Whey Protein Isolate Powder. Is it bad for my colon or good for it ? I have used it in smoothies.
 
dave13 said:
Maybe ask this in the nutriton section,might get more hits. :)
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All I could find at the time was the SCD and Palo diet section.
So I posted my question there. I got a mouthful from Kit. He says it is like putting shrapnel through my GI tract. :ywow::ywow:

I will see what some OTHER folks say. :rosette1:
 
Another day of moderate stomach pain (which puts me just about a month straight of pain x.x) but it could be worse, it could be severe pain!
 
Bad day here. Really bad episode of abdominal pain which set off vomiting, and later diarrhea. Stuck in bed with my heating pad.. like everyday of my life lately.
 
UnXmas said:
Ann Morgan - I've taken antibiotics a few times since getting ill, and they gave me severe diarrhoea too (prior to me having an ileostomy anyway). For me it stopped a couple of days after I finished taking them. It's rare for it to go on weeks or months, but they always have to include worst case scenarios on the info. leaflets and websites of medications.
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Strange coincidence - today I've started another course of antibiotics. Some of the internal staples (I think they're staples anyway) from my last surgery are eroding through my skin and the incision site's infected.
 
dave13 said:
I was asked,again,if crohn's is contagious.
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I can understand why people ask. I'd want to know if I was at risk of catching a disease from someone else. And most people won't have had a reason to learn about Crohn's. But of course some ways of asking are much more tactful than others.

I think the word "disease" carries more negative connotations than terms such as "disorder" or "medical condition". That's just the impression I get anyway; I'm not sure of the distinctions between the actual medical definitions.

Maybe you could try to view the question in the same way as you view the questions nurses always ask you when you're admitted to hospital - if you've been swabbed for MRSA, if you've had diarrhoea or vomiting in the last 24 hours (yeah of course I have Crohn's :rolleyes: ) - they basically just want to know if you're going to make other people sick. Not a polite question, but practical, and understandable. But again, context, timing, etc. can make a big difference to how it comes across when it's a friend/colleague/relative asking you rather than a nurse.
 
Mixed emotions today. The decision was made to remove my gallbladder today which I was surprisingly okay with. Kind of hoping this will be the solution to my terrible year. On the other hand, my insurance deductible was been well taken care of so it really makes sense to take care of it before the end of December and the surgeon is only available until the 23rd while my schedule only allows for me to have it either the 22nd or 23rd... making a very merry Christmas for me. :facepalm:
 
I had nasty crampy gas style pains at work today, to the point where I was sitting on a shelf behind the register, leaning against the wall while hoping no customers would come along. And of course, completely unable to pass gas, and the occasional feeling of get to the bathroom now with no outcome x.x
 
Hey Afidz,
I was reading your post from September and you could have fibromyalgia.

I was diagnosed with this in 2008 which I now believe it was because of Crohn's. I was so swollen my weight went up to 210 from my normal of 165. The doctor back then did the tender spots, neck, shoulders,wrists knees and feet. The rheumatologist wouldn't even consider it! One of those old school doctor's but my GP was convinced after my Mom researched it. Muscle relaxant s and pain meds helped.

I would have my GI test me for it!

The last post about people who put their foot in their mouth you have to overlook. We live in a society if you don't look sick then you just can't be! Pray for them and smile!

Hope this helps!!:thumleft:
 
UnXmas said:
Strange coincidence - today I've started another course of antibiotics. Some of the internal staples (I think they're staples anyway) from my last surgery are eroding through my skin and the incision site's infected.
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And the antibiotics led to me having a fun night emptying my stoma bag four times.
 
UnXmas-I agree,the contagious question is a reasonable one.People are just being cautious.
 
One thing that still hasn't improved is my tiredness. Everything else is a LOT better now, though. I am somewhat worried that my energy levels will never improve, but at this point I am not sure that I even care about that anymore. I am not in the bathroom every 30 mins and when I do have to go, it is not painful.

I'll freakin take it and be happy.
 
ronroush7 said:
Yesterday, I had my first accident in months. I feel like I need to keep going since then.

2
Click to expand...

I had an accident at home recently. I was so pissed off. Had 2 "almost" accidents outside of my apartment. This scares me because I will be out of town for 8 days over Christmas time! I don't have a clue what I will be able to eat ! And my sister has a brand,new car.....I am afraid I will be in the car and have an accident ! She is paying for my whole trip, which is so great. She is putting me up in a nice, relaxing hotel by a river. The whole idea is for me to relax, because I have very much stress in my life and suffer from anxiety ! I took antibiotics in November and that has given me very lose bowels every single day now.Yesterday, at home, I almost had another accident. Those antibiotics really f@cked up my colon and I am so mad about it.
 
Ann Morgan said:
I had an accident at home recently. I was so pissed off. Had 2 "almost" accidents outside of my apartment. This scares me because I will be out of town for 8 days over Christmas time! I don't have a clue what I will be able to eat ! And my sister has a brand,new car.....I am afraid I will be in the car and have an accident ! She is paying for my whole trip, which is so great. She is putting me up in a nice, relaxing hotel by a river. The whole idea is for me to relax, because I have very much stress in my life and suffer from anxiety ! I took antibiotics in November and that has given me very lose bowels every single day now.Yesterday, at home, I almost had another accident. Those antibiotics really f@cked up my colon and I am so mad about it.
Click to expand...

Have you tried loperamide (Imodium) and/or co-phenotrope (Lomotil)? Both good anti-diarrhoea meds with very few side-effects (before I had an ileostomy, I regularly took well over the recommended amount of loperamide with no problems). Imodium you can buy without a doctor's prescription. Codeine and Amitriptyline can also help diarrhoea, though Amitriptyline has a lot of side-effects and codeine is addictive.

Incontinence pads can protect your clothes, though may not hold it all if diarrhoea is very severe.

When I got an ileostomy and was worried about leaks at night, I bought a mattress cover (draw sheet). Something like that would probably protect car seats.

Try to relax! You deserve a break. Accidents may happen, but life will go on afterwards.
 
Feeling very meh. Stomach pain and I'm 9 days away from remicade. And my doctor wants to reduce my dose. Ugh.
 
Hi unxmas: Ahhhhh, I was just writing a post and I lost it because I pushed a button on my new cell phone that I should not have pushed !!!!!!! Thank u for your support and recommendations. I will talk to my pharmacist about it, she is really nice and helpful. I already take 2 Questran Packets a day, I have for years....and that has REALLY helped me to control my diarrhea.....until the antibiotics.

I feel like I am a burden to my sister. I am physically and mentally handicapped. My sister is so good to me and I will never be able to pay her back for everything she has done for me. ( I used to have a job and was very independent. I mourn the loss of my old life every day. I know that I need a new life to replace the old one....but that has not happened yet. ) Now if I travel out of town ( which I rarely, rarely do ) I have to have special considerations made for me. A hotel room with a shower with bars to hold on to, my sister is renting a recliner for me to sleep in while I at the hotel because I cannot sleep in a bed because of arthritis in my neck, hips, and shoulders. Yes, the hotel will be removing the chair and ottoman from my hotel room and Rent-A-Center is delivering a recliner to my hotel room. My sister is paying for the airline ticket, hotel, and everything while I am there.

She supported me financially for 9 months in 2012 when I was broke. I am 54 years old and she is 63 1/2. She just retired. She DOES have money, so I know that she is in no way going broke paying for my vacation and a lot of other things. She worked very, very hard for 35 years at the same company and she deserves a wonderful and happy retirement. SHE has many physical illnesses that she has to deal with and I don't know how she gets through each day herself. But she has a loving, supportive husband, a daughter, son-in-law, and 2 grand-kids and obviously some great medications for her RA. M

My mental illness issues are embarrassing for me, just having lunch with relatives is a challenge. I know my sister and Aunties love me. I want to relax on my vacation. My mom died last year and she lived in the same town as me ( as did my dad before he died in 2005 ). This has left me alone in Arizona and my sister has HER family and her own life in Idaho. I have been invited to Christmas in Idaho for the rest of my life. I don't want to ruin their Christmas and be a "downer". It WILL be so nice to get away from these same four walls in my one room apartment.

So sorry this is so long. I should be writing this on my depression website ( www.depressiontribe.con) or on another thread here. . Wishing everyone a happy and healthy holiday season. : - )
 
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I know how you feel, Ann Morgan. I'm disabled and my parents are my carers. I'm also worrying about how to avoid being a downer at Christmas. But I'm hoping that focusing on watching my nephew get overexcited and keeping my poor dog calm will stop me wallowing in my own depression for a bit!
 
Hi guys I had the big op 2 weeks ago small bowel resection they had to snip a bit of my bladder as well the Crohn's was getting to that the tract bit and apparently I had a thing called meckels divaticulum had it since birth never knew till they found an absess there they took that a out and my appendix so I'm feelin sore biut miserable but I know it will help me for awhile I'm just feeling scared and over welmed
 
Feeling the pain with the antibiotics. I had abscess surgery last month with a seton placement. I stopped the antibiotics for a week and had the most glorious poops. But, fevers came back and so did the augmentin. Now I'm pooping cake batter all day, and yesterday was twice in pants.... in my own home.

The pooping leads to wiping, and wiping hurts with the recovery. Looking forward to ostomy surgery next month to give the old colon a rest.
 
UnXmas said:
I know how you feel, Ann Morgan. I'm disabled and my parents are my carers. I'm also worrying about how to avoid being a downer at Christmas. But I'm hoping that focusing on watching my nephew get overexcited and keeping my poor dog calm will stop me wallowing in my own depression for a bit!
Click to expand...

My niece has two daughters, nine years old and seven years old. They are very cute and lively. I will see them at Christmas. They also have a dog which I really love, his name is Atlas and he was rescued from a shelter five years ago. The only downer of my Christmas vacation may be that I am going from my home in Arizona ( great weather here ) and I am going to Idaho to freeze my butt off ! :ylol:
 
Ann Morgan said:
My niece has two daughters, nine years old and seven years old. They are very cute and lively. I will see them at Christmas. They also have a dog which I really love, his name is Atlas and he was rescued from a shelter five years ago. The only downer of my Christmas vacation may be that I am going from my home in Arizona ( great weather here ) and I am going to Idaho to freeze my butt off ! :ylol:
Click to expand...

We should swap weather! I'm in England and for some reason this Autumn and Winter have been ridiculously warm. Probably not Arizona-warm but much warmer than England should be. But I want snow! I love the cold. And my nephew has it fixed in his head that "Christmas is when it snows"; that it snows every single Christmas and only at Christmas - which is a very understandable belief for a toddler to have when you look at Christmas cards and children's Christmas books. Unfortunately we haven't had a white Christmas here since 2010 and we're unlikely to get one this year!

I'd be lost without my dog, she's my baby!
 
sully1102 said:
Feeling the pain with the antibiotics. I had abscess surgery last month with a seton placement. I stopped the antibiotics for a week and had the most glorious poops. But, fevers came back and so did the augmentin. Now I'm pooping cake batter all day, and yesterday was twice in pants.... in my own home.

The pooping leads to wiping, and wiping hurts with the recovery. Looking forward to ostomy surgery next month to give the old colon a rest.
Click to expand...

I adore having a stoma. It's so much easier! Even though the antibiotics I'm taking at the moment are upsetting my stomach, all it means is that I have to empty my bag more often. But getting up in the night a few times to empty it takes two minutes each time, and I don't have to rush to the bathroom: the diarrhoea makes my stomach crampy, so that wakes me up, but even if it didn't it is unlikely the bag would fill completely, and if I do start finding it fills before I wake up, I'd just switch to a larger bag at nighttime (when I was in hospital and unable to get out of bed, they gave me bags that drain like a catheter, and I took some home with me for emergencies). So no racing to the bathroom, no soreness from wiping, no hours in the bathroom. I do have the occasional leak, but they are so much easier to deal with than the accidents I had before I had a stoma. I think everyone should have a stoma!
 
I've been getting nauseous in the morning sometimes, and I have a medication that can cause nausea if you don't take it with food, so I left it out of my usual handful of pills I take (which today was about an hour before I properly woke up) and I was still nauseous :( Breakfast is the one meal that never hurts and it's frustrating to have to wait for the nausea to pass, especially on days when I have work!
 
Screw the DEA. My pain meds ran out earlier this week, but surgeon can't simply call them in to the pharmacy. I either need to drive an hour to his office to pick up the script, or they'll mail it me.
 
I thought I tore a seton loose the other day.It was painful.My colorectal surgeon checked out my setons and said I pulled them and moved the knots,but did no damage.He remarked while checking the setons that the fistulas are looking better than he thought they would look at this time.Five or so months since my fistulotomy/seton placement.

I feel thankful that bit of encouraging news. :thumright:
 
Hi guys I'm starting to feel better now I can do more things still get tired when going for short im home now was staying with my parents till u was stronger I had surgery on the 27/11/14 not even 3 weeks ago I was a mess when they went in to do the surgery what should have taken 1 to 4 hours ended up to be 6 hours in surgery but I'm getting there I have a very active and aggressive Crohn's I hope they can get it under control
 
Today, I am feeling crappy and apprehensive. Just started humira, have no f**cking idea whether it will work - had so many conflicting stories and information from so many different sources that I don't know whether this is a complete roll of the dice going on Humira, or it actually has a decent chance of working. I dont know. :(
 
leezapeza said:
Hi guys I'm starting to feel better now I can do more things still get tired when going for short im home now was staying with my parents till u was stronger I had surgery on the 27/11/14 not even 3 weeks ago I was a mess when they went in to do the surgery what should have taken 1 to 4 hours ended up to be 6 hours in surgery but I'm getting there I have a very active and aggressive Crohn's I hope they can get it under control
Click to expand...

I hope things improve for you! What kind of surgery was it?
 
Ann Morgan said:
Okay. I was reading some stuff on www.m.webmd.com/croh and I came across this.....

"People with Crohn's Disease are usually able to lead active lifestyles".

What does everyone think about what they wrote ?
Click to expand...

I think this is true - I know a few people with Crohn's in offline life, and they are active most of the time. One had surgery (temporary stoma) but is back working as a PE teacher now! I think the worst cases of Crohn's are more likely to end up on online forums, but even here there are plenty of members who work, have families, go on holidays, exercise... I'd call that an active life even if there are the odd periods where they're stuck at home sick for a bit.
 
"People with Crohn's Disease are usually able to lead active lifestyles".
Click to expand...

I read that too. It angers me. Reminds me of the advice that I just need to 'exercise more', eat more fiber and take Metamucil, and I'll be good to go.

And those with Chronic fatigue just need to take naps every now and then.

As UnXmas was saying, most people who have Cronh's become reclusive (like myself), so most of the general public doesn't know what we go through. I often feel so bad, I can't live offline or online, I just want to curl in a ball and vegetate.
 
UnXmas said:
I hope things improve for you! What kind of surgery was it?
Click to expand...

I had a resection of the illiem and the bottom part of my colon out they took a bit of my bladder as well it was stuck to my small bowel I had a Catherter in for 2 weeks my appendix was also taken and they found I had a thing called meckels diverticulum up near my belly button its a slite bulging of the bowel they think I had it since birth doesn't usually cause probs but they found an absess there as well the surgan said it very rare too have it there and only 2% of people get it so that was taken out as well so I'm feeling pretty empty but finally on the mend I lost another 5 kg since the op on 27 of November
 
Today starts each day of feeling more anxious. Having my gallbladder removed on Wednesday and I cannot wait for that to happen.
 
Hi everyone! I was having a bad day and thought i should go to the forum for some support. I have been experiencing some periodic cramping and pain due to increased diarrhea(which I always have btw). I made a dr appt w my GI and canceled it two days later. I know the same stuff will be discussed. Last tests show all is fine, blood work ok (at least no big change, I am anemic and have a B12 deficiency), could try something new for chronic D, and he'll tell me he won't give me any pain medication. Im not bad enough for humira, Imuran has been keeping my Crohn's under control for a long time now with the exception of having to go on prednisone for 5mos last year. I have severe chronic D. This creates a lot of discomfort and pain. I have been off narcotic medication for a couple years now due to my not wanting to be on them knowing my body was addicted to them and I didn't know where my pain threshold was anymore. I do have some that I use on occasion when Im real bad, and have noticed that I'm needing them more frequently now that i started to work again(just 2 days a week hostessing) and since my husband lost his job 6mos ago and still searching. Stress!! Anyway, I feel like shit and feeling very alone. Sometimes I think my couch is my biggest companion. Read something on short bowel syndrome and wondering if I suffer from that? I guess I know that narcotics are the ONLY thing that has ever slowed my gut and fear Im gonna need to go down that road again, I just can't comprehend how that is the only thing that helps me!! And believe me, Ive tried everything......unless u all know of something that I don't. Please help me not feel so alone when I feel like shit and the dr's have nothing to help!:sign0085:
 
leezapeza said:
I had a resection of the illiem and the bottom part of my colon out they took a bit of my bladder as well it was stuck to my small bowel I had a Catherter in for 2 weeks my appendix was also taken and they found I had a thing called meckels diverticulum up near my belly button its a slite bulging of the bowel they think I had it since birth doesn't usually cause probs but they found an absess there as well the surgan said it very rare too have it there and only 2% of people get it so that was taken out as well so I'm feeling pretty empty but finally on the mend I lost another 5 kg since the op on 27 of November
Click to expand...

What is the healthcare like there ?
 
neohic said:
Today starts each day of feeling more anxious. Having my gallbladder removed on Wednesday and I cannot wait for that to happen.
Click to expand...

I was so sick in 1994. I saw my doctor. He was an old doctor. He did not know anything. I suffered for months. I got a new health insurance plan and a new doctor that was not old. My new doctor ordered an ultrasound and then I had gallbladder surgery a month later by a General Surgeon in 1995. Thank God I had changed insurance companies and had gotten a new, younger doctor......or I would have been suffering even longer.

Will be wishing you a quick recovery.:dusty:
 
Last edited:
hi long term chronie. My symptoms changed drastically in May 2014. I got a new GI doctor because my insurance changed. My new patient visit was very short. He did a colonoscopy ( with biopsy ). A follow up appointment was not scheduled, which I thought was strange. One day an office girl called me with the results of the colonoscopy. She said it was normal and that the doctor wanted me to discontinue taking all of my colon medications ( Questran twice a day and Lialda pills ). I told the gal that I could not discontinue the Questran or else I would have yellow watery diarrhea all day long and I would be homebound ( my exact words ). She wrote down what I said and relayed the information to the doctor. She called me back and she said that the doctor said I could use my colon medications "as needed". I have never had a doctor tell me to discontinue medications before. I am not going back to him. He is an idiot. I had diarrhea for 17 years, then terrible constipation, then had the colonoscopy, then went on antibiotics in November, then got diarrhea from the antibiotics. Well, let's put it this way, I am not constipated any more. I am not cured. and I cannot discontinue my colon medication. I wish I had some pain medication or something. I would like Prednisone and Hydrocodone please, with a side of Clonazepam !
 
I ate way too much today and now am in pain :( I ate literally about 6 hours ago it feels as if my food is stuck up high. Abdomen is all tense :(
I do have surgery next Tuesday for an ileal resection due to scar tissue build up so maybe that's what blocking it. It's such a strange feeling.
How's everyone else?
 
Okay so now I'm feeling considerably worse since my last post.. My abdomen is so bloated and hard (it looks like I'm 6 months pregnant) and I feel ill also with a headache.
I just took two panadol fortes and have also tried going to the bathroom to no success.
Considering I have strictures and am due for surgery next week, can anyone suggest what I should do? Should I try and wait it out or go to the hospital? I don't want to be wasting anyones time in the ER (and it's now 8:20pm so no drs clinics open) but I feel like crap...
 
Lara said:
Okay so now I'm feeling considerably worse since my last post.. My abdomen is so bloated and hard (it looks like I'm 6 months pregnant) and I feel ill also with a headache.
I just took two panadol fortes and have also tried going to the bathroom to no success.
Considering I have strictures and am due for surgery next week, can anyone suggest what I should do? Should I try and wait it out or go to the hospital? I don't want to be wasting anyones time in the ER (and it's now 8:20pm so no drs clinics open) but I feel like crap...
Click to expand...

How are you today,Lara? Did you go to the ER?
 
hamster139 said:
I read that too. It angers me. Reminds me of the advice that I just need to 'exercise more', eat more fiber and take Metamucil, and I'll be good to go.

And those with Chronic fatigue just need to take naps every now and then.

As UnXmas was saying, most people who have Cronh's become reclusive (like myself), so most of the general public doesn't know what we go through. I often feel so bad, I can't live offline or online, I just want to curl in a ball and vegetate.
Click to expand...
The specialist told me to take some Benefiber or something similar. Wouldn't that make me go more?
 
A number of Forum members take Psyllium husks and find that they help with diarrhoea. DustyKat can tell you more about them.
 
I did not know where to ask this. Should a person with Ulcerative Colitis/Crohn's drink alcohol or beer? I personally cannot drink alcohol or beer because I have Acid reflux/gerd. Also I cannot drink with some of the medications that I take. But sometimes I wish I could have a cocktail every once in a while !
 
Ann Morgan said:
I did not know where to ask this. Should a person with Ulcerative Colitis/Crohn's drink alcohol or beer? I personally cannot drink alcohol or beer because I have Acid reflux/gerd. Also I cannot drink with some of the medications that I take. But sometimes I wish I could have a cocktail every once in a while !
Click to expand...


I think it very much depends on your medication, current state (remission/flare), and then in general what you can tolerate! I know I can't because of medication, but before I was on it I was fine drinking -- just never a very big fan of it, so I don't really miss it.
 
dave13 said:
How are you today,Lara? Did you go to the ER?
Click to expand...

Hi Dave! I ended up taking yesterday off work and trying to sleep all day. I still feel very blocked up and my dietician has suggested to use laxatives and that if they don't work, go to the ER.
Thanks for asking :)
How are you feeling?
 
With regards to the "active lifestyle" comment, I've found most Crohn's patients I know have active lives.

I tend to go 5-7 years between flares, and during that time I'm very active. The flares will limit me for a few months, but I'm already planning on a triathlon or two this summer after my ostomy surgery. At least I can't poop myself during the race with the bag!
 
I don't know what a "flare up" is ?

I started having diarrhea in 1997. I don't remember ever having a short or an extended period of time that I have not had to worry about the diarrhea, it is part of my daily life and I always have to worry about it.


What is "remission" ?

Me: 1997 until May 2014 diarrhea.
May 2014: started to have severe constipation.
August 2014: my new GI doctor did a colonoscopy with biopsy.
The colonoscopy came back normal and he told me to discontinue taking
all of my colon medications.
I cannot discontinue my Questran powder or else I will have yellow watery diarrhea
24 hours a day.
So, then he told me to take my colon medications "as needed".
I had been taking 2 Questran a day on a regular basis before the constipation started.
So after the normal colonoscopy I started taking only one Questran a day.
This was sort of working out for me ?
Then in November 2014 I took antibiotics. I did not know that the antibiotics
would cause diarrhea and my PCP doctor KNOWS that I have ulcerative colitis
and still prescribed it to me.
November : diarrhea again because of the antibiotics !
December: still had diarrhea because of the antibiotics.
December 2014: I have still been experimenting with one Questran a day,
but I really need two a day or else I WILL have diarrhea sometime during the day.
Now my colon is back to the way it was before May 2014.
Right now I am taking one to two questran packets a day, and taking what's left of my
Lialda pills. I am not going back to see this new GI doctor. I don't like him at all.

As far as I know, I have never gone through remission.

Recently I have been CONSTANTLY bloated every afternoon, just like a balloon
is inside of me. I am glad that I wear pants with elastic waists !

Thanks for listening. And good luck on your triathalon sully !!!!!!!!!!
 

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