Share Facebook
Crohn's Disease Forum » Support Forum » How are you feeling today?


 
11-13-2014, 11:48 PM   #301
Ann Morgan
Senior Member
[QUOTE=UnXmas;828005]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 ?
11-14-2014, 04:27 AM   #302
UnXmas
Banned
 
Join Date: Oct 2012

My Support Groups:
My stomach was upset again last night. I think it just can't take so much food.
11-14-2014, 07:38 AM   #303
Gram214
 
Gram214's Avatar
 
Join Date: Jul 2014
Location: Gratz, Pennsylvania

My Support Groups:
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
11-14-2014, 10:54 PM   #304
Ann Morgan
Senior Member
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.
11-15-2014, 12:24 AM   #305
Ann Morgan
Senior Member
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.
11-15-2014, 08:27 AM   #306
syzygy
Senior Member
 
Join Date: Sep 2014
Location: Northampton, Massachusetts

My Support Groups:
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.
__________________
Intermittent SBOs starting in 2005
Diagnosed 2013
Started Remicade October 2014
11-15-2014, 02:16 PM   #307
Ann Morgan
Senior Member
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. : - ) .
11-16-2014, 03:22 PM   #308
lilac
 
lilac's Avatar
 
Join Date: Sep 2014

My Support Groups:
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
11-16-2014, 03:36 PM   #309
Ann Morgan
Senior Member
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
11-16-2014, 11:40 PM   #310
BlackButterflies
 
BlackButterflies's Avatar
 
Join Date: Mar 2014
Location: Calgary, Alberta

My Support Groups:
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.
11-17-2014, 10:51 AM   #311
nogutsnoglory
Moderator
 
nogutsnoglory's Avatar
 
Join Date: Sep 2009
Location: New York

My Support Groups:
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.
11-20-2014, 07:53 PM   #312
IofNewt
 
IofNewt's Avatar
 
Join Date: Aug 2014
Location: Verdun, Quebec, Canada

My Support Groups:
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.
__________________
~~
Diagnosed with Crohn's in the 1990's
Treated with Flagyl in the past, but now taking Purenitol.
Started with Remicade Aug 6, 2014. Also using Imodium
Had resection in June 2013, but have a recurrence
already.
11-21-2014, 10:11 AM   #313
neohic
 
neohic's Avatar
 
Join Date: Mar 2014
Location: Alexandria, MN

My Support Groups:
Been awhile since I've been on here. Things were going great - then...
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...
__________________
-Ben
11-21-2014, 04:38 PM   #314
neohic
 
neohic's Avatar
 
Join Date: Mar 2014
Location: Alexandria, MN

My Support Groups:
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.
11-21-2014, 08:10 PM   #315
Polaris
Senior Member
 
Polaris's Avatar
 
Join Date: Jun 2012
Location: California

My Support Groups:
Feeling pretty accomplished.. was able to eat and keep it down. Little pain today, too.
11-22-2014, 05:15 AM   #316
UnXmas
Banned
 
Join Date: Oct 2012

My Support Groups:
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.
11-22-2014, 10:05 PM   #317
Ann Morgan
Senior Member
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 !
11-23-2014, 06:20 AM   #318
dave13
Forum Monitor
 
dave13's Avatar
 
Join Date: Dec 2013
Location: Maine

My Support Groups:
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....
__________________
"It does not do to dwell on dreams and forget to live."
11-23-2014, 04:14 PM   #319
Ann Morgan
Senior Member
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.
11-23-2014, 06:35 PM   #320
dave13
Forum Monitor
 
dave13's Avatar
 
Join Date: Dec 2013
Location: Maine

My Support Groups:
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.
11-23-2014, 09:58 PM   #321
Susan2
Senior Member
 
Susan2's Avatar
 
Join Date: Dec 2011
Location: Geelong, Victoria, Australia

My Support Groups:
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.
__________________
Crohn's Disease - symptoms since c1955, diagnosed early 1970s. On Prednisolone until...
Total Proctocolectomy in 2000.
Ileostomy that behaves most of the time
Currently on no medications, but under constant gaze of very caring GP, with annual blood and other tests.
11-23-2014, 11:50 PM   #322
afidz
Super Moderator
 
afidz's Avatar
 
Join Date: Jun 2012
Location: Mckinney, Texas

My Support Groups:
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.
__________________
Crohn's since 2007
15 Abdominal Surgeries since 2008
Severe Non-repairable abdominal hernia
Ankilosing Spondylitis
Inflammatory Arthritis

Failed meds:
Humira
Remicade
Asacol HD
Cimzia
Methotrexate
11-24-2014, 01:00 AM   #323
afidz
Super Moderator
 
afidz's Avatar
 
Join Date: Jun 2012
Location: Mckinney, Texas

My Support Groups:
! 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.
I don't mean anyone on here, in my personal life. Hope that didn't offend anyone
11-24-2014, 06:14 AM   #324
dave13
Forum Monitor
 
dave13's Avatar
 
Join Date: Dec 2013
Location: Maine

My Support Groups:
I don't mean anyone on here, in my personal life. Hope that didn't offend anyone
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!
11-24-2014, 01:29 PM   #325
Ann Morgan
Senior Member
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.
11-24-2014, 01:32 PM   #326
Ann Morgan
Senior Member
Dave. I am glad you got the help that you needed last year. I never hesitate to go to the ER.
11-24-2014, 01:58 PM   #327
Ann Morgan
Senior Member
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. : - )
11-24-2014, 07:17 PM   #328
Susan2
Senior Member
 
Susan2's Avatar
 
Join Date: Dec 2011
Location: Geelong, Victoria, Australia

My Support Groups:
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.
11-24-2014, 08:03 PM   #329
Ann Morgan
Senior Member
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.
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.
11-28-2014, 05:32 PM   #330
neohic
 
neohic's Avatar
 
Join Date: Mar 2014
Location: Alexandria, MN

My Support Groups:
... Now the waiting game once again for the typical response of not finding anything and no one knowing what happened.
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. Always something...
Reply

Crohn's Disease Forum » Support Forum » How are you feeling today?
Thread Tools


All times are GMT -5. The time now is 10:52 PM.
Copyright 2006-2017 Crohnsforum.com