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08-01-2014, 11:33 AM   #61
valleysangel92
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I'm frustrated today. I thought I was starting to pick up, but apparently that's not happening, I've been in agony all day with my stomach, and now to top it off my friends are kind of annoying me.

About 2 weeks ago we tried to organise a meet up, but we couldn't find a day we could all do easily, so, my one friend (C) and me decided on tomorrow. After that not much had been said, so I tried texting my other friend (M) on Wednesday to see what was happening and she hasn't text back. C text me today asking if I'm still up for it and if so could I see if m is as she's not answering his texts and he has tried calling too, so now I've text her again. I'm so fed up of this, this kind of thing is what happens every time we try to organise something, and while when I was well it was a minor inconvenience it's now a problem. C has been up in North Wales, 4 hours from home and we've not really talked much, but M knows I've recently been very sick and been in the hospital, but she still messes me around and can't give straight answers or even respond to texts. Now I've known this girl since we were infants, she's my best friend and honestly we get on really really well, there's no better friend when your actually speaking to her, but she is really hard to track down and very disorganised.

I know that as normal 21 year olds they can just do what they want when they want. But I only found out today that a time had been set, 3 pm, which means I'll have to plan my medications etc around that, and make sure I'm up at a certain time to eat breakfast so I can have my meds and still feel at least a little hungry for dinner at 3 - 3. 30. None of this will have entered their heads, and honestly I know they have no idea how sick I actually am. What frustrates me is that if someone had told me sooner I could of asked if we could go later, or at least had more time to plan. I now have to work out what I'm wearing and eating and doing about meds and get it all sorted tonight and in the morning, and I currently function at snail speed, so that's gonna be fun.

I haven't seen these two in ages because of them both being away at uni, but I think they'll both have a shock when they see me tomorrow. Moon face, snow white completion + weightloss. M is gonna freak.
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coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
08-01-2014, 12:04 PM   #62
Ali29
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Sorry about your day! Others don't realize how much we have to plan - eating/med, etc just to go out of the house.

Hope your day gets better!!
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Diagnosises - Mast Cell Activation Disorder, IBD Small Intestine-duodenum-villi blunted, Bile Acid/Fat Malabsorption, Chronic nausea-vomiting/pain, esophageal dismotility, mucosal edema, acid hypersecretion, Lymphocytic Colitis, Ocular Migraines, gallbladder removed

Current Meds: H1 H2 Anti Histamines, PPI, Enteragam, Lomotil, Phenergan, Percoset

Meds that did not work: Pentasa, Lialda, Zenpep, Entocort EC, Carafate, Elavil, Lotronex, Desipramine, Questran/Welchol severe bloating/pain.
08-03-2014, 06:29 AM   #63
dave13
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I have to get up several hours before I can leave the house.I now have to get use to setons in my daily routine.(I'm trying very hard to omit the pain in the ass jokes). I feel going to the local store is an expedition that needs exhaustive planning,never mind out-GASP!-to meet someone in a social setting.

valleysangel92-I hope you enjoyed yourself with M
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08-03-2014, 06:41 PM   #64
sarahh5397
 
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I'm having such a horrible weekend things are never "good" but they have been worse this weekend. Just feeling terrible I've heard a lot of you loose your appitite but I've never had that problem until this weekend and its a little more suprising because ive been on prednisone for a few months and that increases it. I'm just miserable having lots of extra pain today and its making me feel depresed I just want some relief and I swear half of this disease is playing the waiting game with doctors appointments and scheduling then waiting to hear results I'm currently waiting to schedule a video capsule the fake one wouldnt go past my stomach so they want to place it endoscopic and I'm so worried about it getting stuck. just a terrible day over all.
08-03-2014, 07:07 PM   #65
Ann Morgan
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sarahh: I understand your depression and sadness. Today I had a 45 minute crying jag. I also suffer from anxiety and having Ulcerative Colitis gives me more anxiety because of the unknowns. I just got a new Gastroenterologist and I am having a colonoscopy later this month. Also, I have had two rectal abscesses in the past and I am constantly worried that I may get more. I had diarrhea for 17 years and now for the past three months I have had severe constipation, so I am wondering WHAT is going on with THAT ! The best thing to do is to Live In The Moment. We cannot change the past. And we cannot know what tomorrow may bring. Please keep in touch and keep us updated on your procedure.
08-03-2014, 08:01 PM   #66
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Thanks! I just dont ussually get this depressed I'm all about taking it day by day. I honestly can't get myself to look at the life long picture that I will be dealing with it my whole life. I obviously know that is the truth but it honestly hasn't regestered with me yet and I'm scared when it does it may send me into some serious depression. Its kinda nice to know I'm not the only one who has random crying moments. I already feel the support of this community its nice to be able to get things off my chest and not have to constantly complain to my boyfriend who is already more supportive then I can even believe. I can say there are some good things I have going for me like having such a great man in my life those are the little things that keep me going at times like this! Thanks for your reply I really hope you get good results from your colonoscopy and figure out whats causeing your constipation. I can honestly say it feels worse the few times I've gotten constipated since all this so I hope they figure it out!
08-04-2014, 07:50 AM   #67
dave13
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I just want some relief and I swear half of this disease is playing the waiting game with doctors appointments and scheduling then waiting to hear results I'm currently waiting to schedule a video capsule the fake one wouldnt go past my stomach so they want to place it endoscopic and I'm so worried about it getting stuck. just a terrible day over all.
I admit the 'hurry up and wait' we have to do is hard for me to deal with at times.I let it create anxiety and that leads to stress and..you all know the rest of the story.

I try to be positive,realistic,but positive.I feel I try so hard to be positive and proactive that when I 'hit the wall' I plummet into lows equal to my highs.I feel so manic emotionally.

I'm trying to establish my routine again.I'm happy to be done with the Cipro and Flagyl.I'm pleased to get back to my SCD and see how that and the Remicade work together.

Getting back to work has been a little slower than I thought it would be.I get exhausted easily still.My employer has been great to me regarding transitioning back to work.I managed to have my hours reduced for when I get back full time.I've been wanting to do that for a while,good mental health wise.Not so good $$ wise,but...better health = less $$ spent,or so I tell myself.

Good luck to all!!
08-04-2014, 11:20 AM   #68
sarahh5397
 
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Today I feel better emotionally but woke up in extreme physical pain we don't have my inflamation under control and I'm just worring myself when any strong new symptoms pop up do you guys rush to the doctor or wait it out? I'm more of the wait and see if it gets better type but with crohn's I'm not sure its such a good idea advice?
08-04-2014, 08:28 PM   #69
afidz
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Kind of down today. Maybe I shouldn't of watched that sad movie. IDK. I just don't know how I am supposed to go the rest of my life feeling the pain that I do 24/7. I started thinking about things, and my mood and mental state when down hill quickly. How many of my future kids activities am I going to miss? How old are they going to be when they start to realize they can't count on me? What if I pass all of this onto them? I really should live in the moment and worry about today, it just really has me down today
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Crohn's since 2007
15 Abdominal Surgeries since 2008
Severe Non-repairable abdominal hernia
Ankilosing Spondylitis
Inflammatory Arthritis

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Humira
Remicade
Asacol HD
Cimzia
Methotrexate
08-04-2014, 09:10 PM   #70
Lam123
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Afidz, I think we all have those days. Having my son has made me realize that I need to really enjoy the good days, but on the bad days, like u, I start to think if I will be well enough to see him get married. I just try to remind myself to only take things one day at a time, that's all I can handle.
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Previous meds: Pentasa, Imuran
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Mother of one beautiful boy and a puppy! 👪🐶Happily married to an amazing and patient man, that I call my best friend❤️I'm just living life one day at a time and trying to figure out this crazy disease! 🍀🌞⭐️
08-04-2014, 10:15 PM   #71
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My crohns symptoms have improved, just the knees. Might have to try methotrexate aswell. Have u ever taken it!
I have knee pain with crohns doing better also ! GI Dr is going to give new meds with remicade infusion in two weeks ! Hate your having knee pain hope you can get relief because I know how bad that can be !
08-04-2014, 10:21 PM   #72
Lam123
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I find knee problems more bothersome then the actual crohns
08-04-2014, 10:35 PM   #73
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I find knee problems more bothersome then the actual crohns
I do to at this time . My orthopedic Dr was wanting to do a knee replacement based on an X-ray . I said I will wait and talk to my GI . I've been working with a rheumatologist for 4 years tried a lot of different meds that causes something else . I'm beginning to think the pain is caused by remicade ! Thanks for listening !
08-04-2014, 10:42 PM   #74
Lam123
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Do you get swelling? I get a swelling and fluid feeling
08-04-2014, 10:54 PM   #75
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Do you get swelling? I get a swelling and fluid feeling
Yes and both real sore when I move them, going down stairs is worse than going up. My legs swell from knees to ankles. For almost 4 weeks after my infusion they hurt really bad !
08-04-2014, 11:46 PM   #76
Ann Morgan
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I am new to this site. I have learned more from this site about my Ulcerative Colitis than I have since I was officially diagnosed in 2006 ( but have had diarrhea since 1997). My question is this : Is arthritis and joint disease directly related to my UC ? I currently have arthritis in my neck ( I am seeing a new Rheumatologist this week ). I have arthritis in my hips ( I am not currently seeing any doctor for this ). And I have joint disease in my left shoulder ( I am seeing a new Ortho doctor next week about my left shoulder and my right shoulder pain too ). They must all have something in common with the UC because as soon as I started to get my severe constipation three months ago, I then started having some really bad arthritis and joint pain. I cannot move my neck and I cannot lift my arms up at the shoulders. Well, that is all for now.
08-05-2014, 01:24 PM   #77
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Today I feel like less of a pile of garbage that I've felt like for the past week... Which is a big step in the right direction.
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08-05-2014, 04:55 PM   #78
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Hello everyone. So refreshing to know I am not the only one out there who has a lot of different feelings on a daily basis. My family and friends are supportive but they just don't get it sometimes. Crohns is not just in my gut...its also in my head. Most days I mosey through but there are far too many that I don't want or can't get out of bed either from pain or depression. I do very little things that I use to enjoy.
Sometimes I think even my gi doctor doesn't get it. However he does try to keep me upbeat by telling me new things are on the horizon for helping crohns patients. I pray this is true.
Nice to vent. Feels good. But I will stop now lol
08-05-2014, 05:23 PM   #79
Ann Morgan
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I really liked the Gastroenterologist that I have been seeing the past eight years. He was very good at his job. Well, he is not covered on my new health insurance plan. So, I now have a new Gastroenterologist as of July 30th. I am scheduled for a colonoscopy on August 21st and I am nervous. I don't know this doctor very well at all ( you know how doctors only talk to you for 10 minutes and then they are on to the next patient ! ). I did not even like his Medical Assistant. Maybe I am judging them both too quickly ? I have had a colonoscopy before, so I know how they work, but this doctor actually does the colonoscopy at his doctors office location. My old doctor did his colonoscopy at a Surgicenter type place ( that was right across from a hospital ). I suffer from anxiety, so I am getting myself worked up ( as usual ). I NEED to have the colonoscopy because I have had some major changes in my bowel movements the past three months, so I guess
the colonoscopy is something I cannot do anything about....I have to have it. That's all for now.
08-05-2014, 06:41 PM   #80
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Hi Ann,
I just want to let you know you might want to check with your new GI to see if tbey are going to sedate you or not and how much. Sometimes if procedure done in doctors office they don't sedate well and can be painful. In endoscopic centers and surgery centers they sedate you much better. I have had many many colonoscopies and endoscopies...sedation best way to go...at least for me. Good luck.
08-05-2014, 08:33 PM   #81
Ann Morgan
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I was told that I would not be awake during the procedure. But I think that tomorrow it would not hurt to call their office to verify that. I already checked with my health insurance today and they said that they would pay 100 percent for the colonoscopy and I would have a co-pay on any lab work. They said they did not pay for the Anesthesiologist, which I thought was strange. I wanted to know how much the Anesthesiologist cost for the procedure, so I called my doctors office. The gal gave me the phone number to the Anesthesiologist to ask them what their fee was. For my last colonoscopy at the Surgicenter I actually told them that I suffered from a lot of anxiety and so they gave me a little extra medication to make sure I would be totally sedated for the procedure. I was happy that they listened to me and took me seriously. I did not wake up and the procedure went well. PS : I have had an endoscopy too.
08-05-2014, 08:48 PM   #82
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good to hear that you will be sedated. I would double check if I were you too. I seen/heard of folks getting colonoscopies in the doctors office. They were given something to relax them but not sedate and it was very uncomfortable or painful. I hated witnessing witness it especially in a young teenage girl. So when I hear of people getting procedure in office I try to give them a heads up. I know some offices are able to sedate, which is good. Just double check. Doesn't cost anything, right? I wish you well.
08-06-2014, 02:18 AM   #83
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Hi all

Today I am feeling very confused. I have been in a flare since January my symptoms are usually pretty much the same as every other flare I have had except this is the first time I have suffered with a very sore mouth and tongue. This past week I have less pain in my abdomen my D hasn't been as bad so I was hoping I was finally on the mend. The problem is even though some of my symptoms seem better my sore mouth is getting worse and I am now suffering with dizziness I feel very light headed most of the time which makes me feel nauseous. I just wondered if anyone has any ideas about what is going on with me. I feel so frustrated and down as every time I feel a bit better I seem to get something else wrong.

Sorry for moaning I just needed to tell someone how I am feeling.
08-06-2014, 05:23 AM   #84
valleysangel92
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I'm feeling like I've hit a brick wall at the moment.

I've been in increasing pain since last Friday. Tapering the steroids clearly isn't agreeing with me. I'm now on 15 mg and dreading going down to 10 next week. I've tried three days in a row to get in with my GP, I've been told there are no advance book appointments so been calling in the mornings. The lines open at 8, I got through at 8.15 today and was told they had no appointments in either of the two practices they have. I've not heard anything about my scope yet, so I have no idea when that will be. In the mean time I don't know what to do. I'd call my nurse but I don't see what they would say apart from going back up the steroids. I'm also taking pentasa but it seems to be doing nothing for me. I don't see my consultant until the 26 th august. It seems highly unlikely that I will of had my scope by then, so I don't know if we will actually be able to move forward. So I'm currently at a dead end. I'm barely sleeping and I have my health assessment for university next week, 2 days after I drop to 10 mg of Pred. I honestly don't think I have much chance of passing if I don't improve before then. I love the nhs, but the waiting around drives me crazy.
08-06-2014, 12:50 PM   #85
Ann Morgan
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dear evaj: I was concerned about my anesthesia for my colonoscopy that will take place at my doctors office on August 21st, so today I actually called the Anesthesiologist and talked to him ! I suffer from anxiety and so before I got the procedure I wanted to get some straight answers about the drug that I would be given by him and if I was going to be totally sedated for the procedure. He assured me I would be totally sedated and that the drug I would be given is PROPOFOL. Has anyone else been given propofol before and what has their experience been ? I have a totally new Gastroenterologist this year. I don't know what I am all worked up about, since I have had two colonoscopy procedures in the past, but they were by a different doctor and they were done at a Surgicenter, not a doctors office. My Insurance Company said yesterday that the Anesthesia was not covered. But today the Anesthesiologist told me that it would be covered. Anyhow, it doesn't hurt to do a little research before you have a procedure done because Anesthesia CAN be dangerous. The reason for my colonoscopy is because I have been severely constipated for three months and before that I had diarrhea for 17 years. Thanks for listening.
08-06-2014, 01:06 PM   #86
poopaholic
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Propofol is what I always get when I get my scopes done . That is the drug that killed Michael Jackson, but remember he was using it unsupervised . It is a very good drug when administered properly. I never remember anything .
08-06-2014, 01:10 PM   #87
Ann Morgan
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dear poopaholic: Thanks for your quick reply ! PS : I love that dog photo !
08-06-2014, 01:13 PM   #88
poopaholic
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That's my buddy Igor. He is very lazy. That works well for me.
08-06-2014, 02:49 PM   #89
Grumpy1
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Today I'm feeling confused and worried. I just got tested for Lupus (yay me), and a variety of other autoimmune diseases. The issue seems to be that I have a nasty immune system that keeps reacting to the medications for Crohn's. I have to go see an allergist on an emergency appt. this week and am slated for a rheumatologist in November - it just keeps getting better. Depending on the Allergist I have to go on methotrexate so that I can take the humira - not pretty and not having fun yet.
08-06-2014, 03:34 PM   #90
poopaholic
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Humira gave me lupus, Drug induced lupus. I stopped the humira and the lupus went away along with the rhumatory arthritis . Thank goodness life was getting hard to deal with there for awhile.
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