How are you feeling today?

Hang in there everybody. Hope stands for: Hold On Pain Ends.

My prep liquid for my colonoscopy was not as bad as I thought. My colonoscopy was on 8/21 and it went better than I expected. The staff and doctors were all very nice to me and that helped put me at ease. I did not suffer any side effects from the medication. I did not have any problems from the procedure after I went home. A gal from the doctors office called me the following day to see how I was feeling. The doctor did take a biopsy. It takes maybe 10 days to hear back from the lab on the results. I suffer from anxiety so I have a tendency to worry about everything.

All that worry was for nothing. I think I get scared because I am all alone and I don't have any family or friends. My sister lives out of state. I just have to learn how to calm myself down when things in my life get very emotional for me. I don't have any family or friends here. My mom died in December 2013 and I know that I am still grieving her death. We are going to bury my moms ashes over Labor Day weekend, so that should bring some closure. Also, I am going to participate in a Bereavement Workshop starting September 23rd, 2014, I think the workshop will help me a lot. Thanks for listening. : - )

Hi Ann,
I am happy it all went well. Good luck on the results of the biopsy.

Not too bad, other than I keep going against my low residue diet. In the morning I take all my medication, drink my elemental and have something sensible like scrambled eggs. Then suddenly I'm eating a McDonald's. -_-

I blame pred!

Tonight I'm a little apprehensive, I have my follow up with my consultant in the morning and things have been rough lately. I can't get off my steroids and pentasa seems to be doing nothing for me.

I'm still waiting for a colonoscopy, no sign of the appointment and no idea how long the waiting list is supposed to be. I was referred on the urgent list 6 weeks ago. Not a peep.

So this leaves us in a hard position. My MRI was ok but my fecal cal is significantly raised so we know there is inflammation there. However without a colonoscopy it's tough to know how progressed that inflammation is and therefore the best way to treat it.

When I was in hospital in June it was suggested that I'd be started on azathioprine if we couldn't get the steroids lowered then. So that might be where I'm headed. I'm just unsure if my GI will be willing to move to that before the scope. I don't know how I feel about it myself. I know azathioprine is a big step, and I know it might be better to wait to have all the information, but I am so done with the constant pain and feeling sick and crippling stomach cramps. I'm stuck at 20 mg of Pred, any lower and I deteriorate fast. If I come off Pred and just have pentasa I can see me ending up back at the hospital.

On the plus side, my consultant is someone I feel comfortable with and who I trust to make the best choice for me and to allow me to speak my mind and give me a part in the decision. So many doctors in the UK forget that as a patient the illness is a much bigger part of your life than just the time spent in that room and therefore don't take the time to explain things or take your experiences and concerns on board. Fortunately this one is different.

valley: I can't imagine waiting SIX weeks for a colonoscopy ! Wow. Why such a wait ? I think that once you have the colonoscopy it will answer a lot of questions that you have no answers to right now. I hope you can get your procedure done soon. I hope that your name is at the top of that waiting list. Hang in there and don't give up.

I understand what you said about doctors not understanding the big picture. I went to my new Gastroenterologist recently and I tried to talk to him about everything that is going on with my health ( not just my Ulcerative Colitis ). He really wasn't listening. I have been having other health issues that I believe are directly related to the Ulcerative Colitis. He did not seem to care about what I had to say. He was just typing stuff into his lap top computer and he ordered a colonoscopy right away because of my new symptoms and because I had not had a colonoscopy in five years. I think I talked to the guy for ten minutes. He doesn't even know me. I made sure that my old Gastroenterologist records were sent to him but I am not sure he ever read them. He really must read them to know the history of my illness before I saw him. I saw my old doctor for 8 years, but my old doctor is not included in my new insurance plan. I had a biopsy, but I do not have a return appointment set up for him yet. I will see what the biopsy says.

That's the urgent list, I have no idea what 'normal ' would be! Unfortunately that's just how it is here. Although people have told me recently that they only wait 6-8 weeks on routine lists and they are in the UK too, so I don't know how that works! Must just be the way it is at my health board. This is the major down side to the nhs. Don't get me wrong I love it, it's saved me and countless people I know and love. But the waiting is the pits. I'll be asking about the wait tomorrow but I don't know that there's much my consultant can do about it other than getting me admitted to have it that way. I don't think that'll happen though ( I hope not) .

Urgh I hear you. I've had so many consultations where they spend the whole time looking at the computer or make me feel like I might as well tell the wall how I feel. Or I've had really rushed appointments because they've gotten themselves behind so then they haven't read your name never mind your notes and your in and out in 5 mins. I hope you get more joy at your next appointment!

Too bad about waiting so long,valleysangel92.I am happy to hear you like and trust your consultant.I totally understand the 'nose in the laptop,barely making eye contact' kinda doctors you and Ann Morgan describe.

I feel very fortunate because my new GI and my colorectal surgeon actually talk with me.They actually sit down,without a laptop,and let me ask questions.Which they even answer!The only time they use a laptop is to reference information on the subject we are talking about at the moment.

Hi guys
Rant time. I am on pred again to try and stop my current bleed. I go from on top of the world invincible to moody and then absolutely crash in exhaustion. I am feeling hopeful though. With the help of my husband I have started tracking food and symptoms better. I was so overwhelmed and felt so alone before that I couldn't tell up from down. I kept losing weight because I was hardly eating as everything caused problems. I have now figured out a few safe foods and am building myself a food list from there. I sure love him and all of his support.
I am off of work again. I just couldn't do it. I was too damn exhausted all of the time again. I am needing to nap every few hours again right now. This brings me to my next issue. I am a journeyman welder by trade - who has not been able to do my physical job for months now. I don't think I ever can again it is just too hard now. This leaves me needing a new career and feeling lost in that regard. I think part of my problem is I am frozen by fear and too afraid to make a leap into a new career path as school is an expensive mistake if you choose wrong. It's something I need to figure out over the next few days.
Thanks guys. It's nice to have somewhere to lay it all out. Cheers!

Butterflies.... I know how you feel, just coming off a six month break from work myself. I totally relate to the Prednisone roller coaster, they're not called The Devil's Tic Tacs for nothing! And when weeks would pass, and I couldn't tell up from down, I held on, waiting for the day when things would turn for the better...,from the inside out. And very recently, they have for me. And I say that only to say that they will for you, too. Don't put too much stock in your emotions, heck, half the time or more they're not even you- it's the meds or the Crohn's. Don't own negative feelings as much as possible, just put em on the Crohn's account. Take what each day brings for what it is- nothing less or nothing more- the day itself is not just a means to an end but there is something there to be had for itself. And most of all, hold on to the hope of better things to come, because it will get better. Anyway, that's my take on these things, your mileage may vary. God bless.

How do I feel ? Well, this weekend I was out of town. I made some poor food choices at the airports and that, of course, caused me to have "emergency diarrhea". Emergency Diarrhea for me is when I literally have to run to the restroom and then hope I don't have an accident in front of everyone. The first time this happened I ran into the restroom and all of the stalls were taken and a lady was in front of me waiting in line. She must have heard the desperation in my voice because she let me cut in front of her in line.... Thank God !

I made another poor food choice that made me have diarrhea in the airplane restroom and then when the plane landed I had to find a restroom then too. And even after I got home from the airport I still had diarrhea.(I was so happy that I did not have the urge to use the restroom while taking the cab home from the airport, I was very lucky ).

I was also with some relatives over the weekend and I was not eating properly because I was not at home. My Aunt bought us pizza and she offered us fudge and cookies. On another occasion it was macaroni salad and sandwiches and cookies and punch. So, of course I just went along with the crowd and ate the food. There is so little that I can eat at a restaurant and so it is almost impossible for me to go out to eat, so I don't. If I prepare my food at home and I know what the ingredients are, then I feel better and I avoid the "emergency diarrhea". I gave up coffee and candy three months ago, but this weekend I ate some fudge and I had coffee twice. My Aunt seems to be eating all of the time. I don't know how she can eat so much. She is not obese, but she is not super thin either. I myself am obese, but I cannot eat large amounts of food at one time. I can eat smaller amounts more often throughout the day.

So, how I feel today is relieved ! I am relieved to be at home and able to control my diet better and make better food choices. I eat pretty plainly at home, which is boring but very wise. I have learned by trial and error which foods I can and cannot eat. I cannot eat greasy food, I cannot eat eggs, I cannot eat shellfish. Well, those are only three of MANY foods I cannot eat. Also, I cannot drink alcohol any longer because of my acid reflux.

Well, I see my Endocrinologist tomorrow so I am curious about how much I will weigh. I lost 20 pounds between May and June because of my severe constipation and then later on I lost 5 more. I had lost my appetite back then. But now I feel my appetite coming back and I am concerned that I will gain the weight back ! I am obese, so losing 25 pounds is a big deal. I need to lose more even. The weird thing is that I do not feel any better after I lost the weight, I just started to have MORE problems.....with my colon and my arthritis and my joint disease and my feet.

Thanks for listening. I hope everyone had a good Labor Day Weekend.

so i'm going to "check in" as I don't know anywhere else that my post really fits its just venting... This is Humira week 3 - Its 4:00pm and I get to leave work soon... I've felt sick to my stomach since about 11am, i ate lunch at noon and spent some time trying to throw up because of how nauseus i feel ... I've spent most of the day holding my head because I've been hot or cold ... had to politely ignore the comment by one of my coworkers that "I should throw up infront of someone that way people would know I'm not faking it" ... I love how people think you would want to fake something like this... I would love to feel healthy and have the energy to do my normal day to my fullest potential except my fullest potential is currently being used to hold my head up and keep a somewhat smile on when all i want to do is curl up in a corner and clutch my stomach.

I've been feeling pretty good since starting Remicade five weeks ago.Infusion number three is next Tuesday.This week has been filled with inappropriate cliche's for some reason.Looking skinny,losing weight,etc.

Cliche's aside...I'm feeling good.:ycool:

I'm apprehensive to say I feel good because each time I start to feel good,CD seems to want to remind me it's still there.

Can't run scared my whole life.F### You,crohns,I feel good today!

Great for you Dave13. I have been on Remicade for almost 2 years. I didn't think it was working, was tired of the 3 hour infusion. so I decided I was done and had my last one in September 2013. 2 months later I had 2 TIA's (little strokes) and about 2.5 weeks later in Dec I had a full blown stroke. All because of my inflammation in my body from the Crohns. Bummer. Needless to say I returned to Remicade, and more meds for blood thinners etc. I still get angry because I am taking all these meds but still running to the bathroom, pain in my right side, nauseous majority of the time, fatigued all the time blah blah blah...frustrating!!!I hope the remicade works for you and you continue to feel fantastic!!!

How am I feeling today. Tired and my body hurts. I have spent today at home in my apartment. I have been sitting too long. Watched television and then somehow am now spending too much time on this computer, which makes my body hurt and my eyes very tired. I am going out tomorrow for my Physical Therapy evaluation of my shoulders ( joint disease and arthritis ). And I am going for a Physical Therapy session for my neck ( arthritis ). When I say I can barely move my neck, I mean it. When doctors ask me to look up, I cannot move my neck. When they ask me to look down, I cannot move my neck. And my side to side mobility is compromised. There is not much they can do for the up and down part, but my mobility in my side to side motion seems to be improving. I have been walking hunched over for at least 7 years and my neck has been bad since then too ( I walk hunched over and all I get to see mostly is the ground/floor ). When I had a job my co-workers always said " stand up straight". But I couldn't stand up straight. I just had some spine x-rays recently and I think some of the results came back saying that some things were curving to the left - - - that doesn't surprise me. I get mad when I have to alter and change everything in my entire life based on all of the disabilities that I have. I cannot lift my arms very far, so I always need assistance at the grocery store. Traveling in the airport, well I have to have a guy push me in a wheelchair to get to the airplane gate. Talking to someone standing next to me, I cannot move my neck up to see them....so it is better if we both sit down so at least I can see them and talk to them eye to eye. My cupboards at home, I only use the bottom cupboards. I just get mad because all of the physical and mental health issues effect my life and I have to change my life to accommodate them. I am 54 years old and people 10 years older open doors for me. How embarrassing. Or maybe they think I have cancer or something because I have this outrageously short, short hair cut ( yes, it is like an Army haircut - - and I am a woman. But I like my hair cut, I am finally starting to "own it" after almost three years. ) Well, that is enough of my babble. It has no direction. It has no beginning. It has no end.

I'm exhausted, have body aches, and also a bad headache that won't go away. I stayed home from work and pretty much laid in bed all day.

dear stelarjess: I am exhausted every day. Some call it fatigue. Some call it tired. I can totally understand how you feel. I used to have migraine headaches back in 2006 and 2007 and they were very painful. I once waited six hours in the Emergency Room to get help for a terrible, terrible migraine. Since I wasn't bleeding to death or missing a limb I suppose I got put down at the end of the list. So there I sat in a wheelchair in the Emergency Room waiting room leaning against a wall for six hours. I don't have one day where I don't have a pain or ache or discomfort. Many people dream of money or fame, I dream of having a good nights sleep and waking up refreshed and having no physical or emotional pain for just 24 hours.

How do I feel today? Well today my colon is feeling well, so I am happy about that.

But off topic: I am feeling pissed off. Someone has cut the gas line on my vehicle and so I have had it towed to my mechanic and my vehicle won't be ready to be picked up until Monday, and today is Thursday afternoon. I am pissed off that someone would mess with my vehicle and vandalize it. Did they do it to get some gasoline ? Or did they do it just to vandalize something ? I am 54 years old and I have never had someone damage my vehicle before. I guess this is a question that will never be answered.

Ann Morgan said:

dear stelarjess: I am exhausted every day. Some call it fatigue. Some call it tired. I can totally understand how you feel. I used to have migraine headaches back in 2006 and 2007 and they were very painful. I once waited six hours in the Emergency Room to get help for a terrible, terrible migraine. Since I wasn't bleeding to death or missing a limb I suppose I got put down at the end of the list. So there I sat in a wheelchair in the Emergency Room waiting room leaning against a wall for six hours. I don't have one day where I don't have a pain or ache or discomfort. Many people dream of money or fame, I dream of having a good nights sleep and waking up refreshed and having no physical or emotional pain for just 24 hours.

Click to expand...

I'm so sorry you had that experience I've also had to wait in the ER, in the hallway for hours, with a heart rate in the 150s no big deal! I also dream for the same. I don't remember what it feels like to feel normal, or have energy. Hugs to you.

Started feeling like I may be getting a blockage about mid day! Ugh severe pain! Thought it was because I didn't get a chance to have a break @ work and didn't get a chance to have a snack! Ate lunch and was starving and it seemed to get worse! Ugh! So I stopped @ the store on the way home from work and bought some ensure. Had one cause I was kinda hungry and was afraid to eat!!! Don't want another blockage!!! Amazingly I feel much better this evening!!! How long should I continue with the liquid diet???:shifty::shifty::shifty:

chuckmya: Can you call your doctors office and just talk to a nurse or nurse practioner on the phone to ask them about the liquid diet without actually having to make an appointment to see the doctor. What about a Physicians Assistant, some of my doctors offices have those. Sometimes I can call the Medical Assistant for the doctor that I see and she/he can talk to the doctor and then give me a call back answering my question without having to go into the doctors office. PS: Love your dog photo !

Spent the last few days in a post-prednisone funk. I don't even know where the time went or what I did. I have not been to work and I did not leave the house. I pretty much slept and wandered my house like a zombie. I finally went out this afternoon with some energy and I have decided something: I am going to kick Crohn's ass. I am not letting it control me anymore than it should. I refuse to let it kick me and keep me down. That is bullshit and I am not taking that. I have spent the last year bleeding a full eleven out of twelve months and am currently not having a bleed. I am keeping food in me pretty well. That is my first victory. It won't be my last. I will fight this upsetting never ending fatigue. I will fight the anger and the sadness and the fear this disease has made me feel, sometimes all within the same moment. My story won't continue this way. I refuse to let it.

Morning all. I am feeling very anxious today I am doing my prep ready for a Colonoscopy tomorrow. I am dreading having it done as the last one I had was very unpleasant. I am not looking forward to drinking the laxative drink I have been told it tastes disgusting. I also feel very unwell today, I have just had 5 days where I had no pain just D and a sore mouth, I thought this flare was finally going but yesterday it came back with a vengeance. I have an awful pain in my right hand side that hurts even more when I breath in to deep, I also have horrible sweats and feel dizzy. I am so fed up as I felt much better and now I feel worse than ever. Sorry for moaning.

Honey7, feel free to moan any time you want. We all are here to lend an ear !
Colonoscopy should not be unpleasant...just that darn prep. When I have my scopes done my GI makes sure I have the most pleasant nap during it.
By the sounds of things you should be diagnosed very soon.. then you can get on meds for it and hopefully get to feeling better. God Bless

Honey7-I was out for my colonoscopy too.Check to see if you have the option.You wake up and it is over.It is good to have someone with you,an advocate,when you wake to hear what the doctor has to report back in the recovery room.Good luck!

Thank you for your comments Gram 214 and Dave 13 they have made me feel better. I have drunk a liter of this nasty stuff just got to keep going I think I will struggle with the second liter all though I know I have to drink it. The reason I am dreading tomorrow is because the last Colonoscopy I had they never gave me any sedation it hurt so much and also they could not do it properly as I was very blocked up even though I had prep last time they had to stop and reschedule. They have said I will definitely be sedated tomorrow. Hopefully I might at last get a diagnoses.

Honey: I agree with Gram , a colonoscopy should not be painful. You should always be totally sedated during the procedure. I have a new Gastroenterologist and I was quite concerned before my recent colonoscopy because I had a new doctor and also he performed the procedure in his doctors building there and not in a SurgiCenter place. I was also concerned about anesthesia. Believe it or not I called the Anesthesiologist and I was guaranteed that I would be totally sedated and not just put into a twilight sleep or something like that. I also asked what the drug was that he would be giving me. He gave me Propofol. During my last colonoscopy with my old doctor, I was given Versed. I really liked my old doctor and trusted him a lot and I saw him for 8 years. But my Insurance Company changed and I could no longer see my old doctor. PS: I hated the prep liquid too ! I have heard the new prep liquid is better now than it was 5 years ago. I don't agree with them. The prep is worse than the procedure. Propolfol, I have heard, is a short term drug, which means it stays in your system for a very short time. I did not have any side affects from the drug or the procedure. Actually I was doing some house-cleaning that same afternoon ( weird, I thought ). Please call your doctor to make sure you will be totally sedated this time around. It should never hurt to have the procedure. I DID have a Flexible Sigmoidoscopy many years ago, and I was awake for that ! That was terrible. Take it easy and try not to worry. I am a worrier too and have a lot of anxiety.

Honey: When I did my prep this is how it went. I had my colonoscopy on August 21st. At 6pm on August 19th I was to start only drinking liquids ( like apple juice and Jello and stuff like that ). On August 20th I was to remain on the liquid diet. At 4pm on August 20th I took the first phase of my prep liquid. It started to work pretty quickly for me. On the morning of August 21st, the morning before the procedure, I took the second phase of my prep liquid at 8am. My procedure was at around 1pm that afternoon. I had the procedure and then I woke up afterwards. I felt okay. Normally a person from your friends or family drive you home after the procedure, but since I don't have either I was allowed to take a cab home. That was how it all went for me.

Evening all,

Haven't posted on this thread before but I felt a bit of honesty is needed in my day and this is as good a place as any to get it out there! Symptoms have been "normal" for me, but the idea of what normal exactly is has me pissed off and overwhelmed with sadness all at the same time.

At the beginning of this summer I moved 1000 miles away from my college town with the love of my life, was starting on cimzia and was very hopeful. On Tuesday I will return to my mother's home for the first time in 6 years because the cimzia failed, I will require another's assistance to get to the infusion clinic to begin entyvio, and I am unable to care for myself. I cannot ask my S.O. to continue sacrificing his career and medical care to cover my persistent costs and needs even though it is perfectly Okay by him. Not to mention caring for my crohn's is a full-time job in and of itself let alone on top of being the sole income at a job that requires 60+ hours per week. So I am going to where the resources are to get healthy, and he will stay here to hold down the fort and work on building a home for me to come back to. In this I know I am lucky, but I don't know what we will or can do if this doesn't pan out. If I leave, continue to work hard on my health, continue to support and treat my body, and continue to see no improvement.

No one exactly dreams of a life of spending hours every day managing pain, scheduling activities, responsibilities and tasks around eating and medication schedules, telling their body to "just move dammit - it's only one flight of stairs!" or that taking a shower and being able to wear jeans instead of sweats or pj's an accomplishment.

A week from today, 8 years ago, I was hospitalized for the first time and diagnosed as my body shut down on me. This will be my 9th year with severe/ acute systemic crohn's and today I'm so tired of being strong, of being hopeful, of telling myself the next med. will be the one for me, that I will be one of that 33% that sees a response or even remission. I can't bear to think about what happens if I'm not.

I keep being told to be strong, to have faith, all those cliche's I know you all know as well.

Thing is, I know I'm strong, I'll get through it; but other's don't seem to realize the price and sacrifices made for one to be strong and persistent in the face of chronic illness. I keep telling myself someday will be my day - but I want to feel like I have a full life today - not just someday - because I've been telling myself that for 8 years and believe it a little less with every additional year. In being strong I find I can't be there for others as much as I'd like, I have to watch their struggles and know what I have to offer probably is not enough. In being strong I have to leave the person I love so I can focus on myself and vice versa. In being strong I have to accept that the life I dreamed of will not be the life I lead. Instead I walk a path covered in underbrush that makes me feel clumsy, slow, behind the curve, and constantly working far too hard for far too little. I'm only 23, there's a lot of time for me to make this path mine, to rock it, for the underbrush to lighten up a bit but today I so badly wish I didn't carry this burden. I wish I didn't see how I'm not the only one in my life who's dreams and imagined life won't come true - my mother's dreams for her daughter, my S.O.'s dreams of family life, my younger sister's vision of me standing, dancing and laughing beside her when she gets married next saturday. Instead, it's just a little bit skewed - and while they all seem to be ok with it all because they are just so happy I'm still here, still fighting, still around in some capacity I am sad for all that's been lost and will continue to be lost, and so angry at that voice in my head that keeps telling me maybe tomorrow will be my day. I'm just craving that normal, boring, movie like, cliched, american dream in my life - no strings attached.

Wow,duh panda.Sometimes it does seem all we do is fight each moment to make it to the next.We don't know what each day will bring.We would all love to live 'normal' lives and have them come out the way we dreamed they would be.

I hope your move helps you achieve your dreams.Through your sadness I still hear the tone of someone who fights,who is very tired,but still fights.You are a strong young women that seems to have a very supportive family.Take the small victories where you can and keep moving forward.

I am amazed each day at the strength of Crohnies.

Hi all I had my Colonoscopy yesterday and you were right I did not know anything about it. I went in and joked saying can they give me a double dose of the sedative and to my amazement he said yes. I was completely knocked out when I came round I felt fine except I was very sleepy. Definitely the worst thing was the prep, I would never worry about having this procedure again. They took biopsies and now I have to wait for the results which they said I should get within two weeks.I hope by me putting this on here it will put other peoples minds at rest if they are worrying about having this done so long as you are sedated there really is nothing to worry about.

Feel like crap today, my stomach feels like a punching bag. My crohns never wants to stay hush it's always active

Today I feel much better. Yesterday was a really low day for me with one thing and another. I hate getting that way but I think its good sometimes to have a wallow and then get back to normal. I have been scared to eat much today as I'm still really sore from having the Seton in and going to the toilet is a bad experience. But I can't stop it and I can't go all day with nothing I guess. I'm back to work tomorrow so I'll see how that goes!

4th Week on Humira: Had a fever of 102 this past saterday then 100 on Sunday ... called into work because I'd been sleepless and feverish all weekend...called my doctor on Monday morning who said if I got a fever again go to urgent care, I got my 100 fever again at about 5pm and went to urgent care ...so they take a urine sample Lo and behold ...I have a urinary tract infection. I have to believe that this is due to Humira I've never had a UTI before... I'm starting to not like this drug ... not to sure what I'm supposed to do to prevent future UTI's when I wouldn't have it if Humira wasn't lowering my ability to fight infections.

I just had my third Remicade infusion today.I'll move onto the eight week plan from here on.

My fistulas are draining more since starting remicade :ack:,sorry about that image,but my GI and colorectal surgeon are happy.If that is what has to happen to get rid of the fistulas,than I'm a happy camper too.

I'm getting use to the setons,Remicade seems to be doing what it should be doing,my recent sbft showed my resection is looking healthy and upper GI clear of inflammation.

I have to say I am feeling pretty good right now.

Urgh, sorry to say I am in a flare....Bummer. Been through some stress and I totally get why Im flaring. It doesn't make it any easier though. Been struggling the last couple of months and doc has decided to up my Imuran and add humira. I have a love/hate relationship with medicine. I wish I wasn't on any but am so happy there is something for relief. Eating my "safe" food, cheese and saltines and G2. Let's see how that will go! Thanks for listening...:frown:

honey: I just had a colonoscopy recently too and I am waiting for my biopsy results. I have had three colonoscopies in the past, but I have a new Gastroenterologist this year and I was a bit scared about the procedure because it was a new doctor. As soon as the RN put the sedative in my IV I was knocked out immediately. When I woke up I felt fine and it seemed like no time had passed at all. The only thing that was different this time was that I had air in my colon that I had to expel and I had not had that happen in my previous three procedures. Hope your results bring you good news.

Crappy. Ring-of-fire. Cramps. Tired. Achy. Annoyed. Frustrated. Everything BUT hungry. All in all, same as yesterday and the day before.

This has been going on for weeks now. I am not eating. At least not properly... whatever properly means for crohns sufferers. The only things I can keep in me are rice krispy squares (which doesn't make a lot of sense, but OK), kraft dinner, chocolate, grilled cheese, gummy bears or worms (thank you bad tummy Gods for that small mercy), croissants, salmon and rice (my one full meal this week so far...) and mints.

Not exactly a menu chok-fulla goodness, is it? And I am only eating these things cuz they are not sending me running to the toilet every hour and not cuz I actually want any of them (except for the gummies... I totally want those!). Oh and cuz even though I don't want to eat, I do have to eat something.

not sure which is worse...the crohns symptoms or the low immune system, always feeling sick & fatigued. I feel like a hypochondriac, only I am NOT. I feel never felt so ill for over a year consistently in my entire life. And trying to keep up with a full time job teaching little ones, taking 12 hours grad classes, and taking care of my family...I am crawling by the end of the day. And my massive schedule the lass four days has allowed me only 4 1/2 hours sleep at night, when my body requires WAY MORE than that now. How am I feeling today? Defeated...

lisa: Wow. I admire your strength. My niece has been teaching little ones for 15 years now, and I see it on her face that it just literally exhausts her ( and she is only 37 years old, but she also has two kids of her own ). I have not worked in 5 1/2 years and I receive Disability benefits. I don't think I could ever work again. Today I took a cab to my mechanics garage across town. Then I picked up my vehicle there. Then I went to the gas station. Then I went to a Laundromat to do my laundry. Then I went to the grocery store. Then I mailed three letters. I was only gone from my apartment for less than four hours and I was totally physically and mentally exhausted ! I suffer from Ulcerative Colitis, many other physical health conditions and mental illness. I am just tired all of the time. I don't know the anecdote for all of this. I wish I did.

NEWT: I have been experiencing a lack of appetite or less of an appetite since May of this year. I have had some changes in my Ulcerative Colitis and I believe those changes have changed my appetite. In May I started to get severely constipated after having diarrhea for 17 years. Because of the bad constipation I did not want to eat ( who wants to eat food when it doesn't want to come out ). I have lost 27 pounds ! I am obese and so my doctors think it is fantastic that I have lost the weight. But I have not been TRYING to lose weight. If a person is trying to lose weight and is eating healthy, then that is normal. But when a person loses 27 pounds and is not trying to lose weight, then there is a problem there as far as I can concerned. Hey, don't worry about the foods on your list. You can eat anything you want to. Some foods that make one person have diarrhea may make another person have constipation. It is good to have a list of foods that don't bother you. I eat a very small variety of foods. I eat my healthy breakfast smoothie, I will eat cereal and milk. And I will eat macaroni and cheese. These are my basics. I gave up coffee and candy four months ago. Keep in touch. Keep eating those gummies, you should be able to eat something that makes you happy.:ylol:

Feeling hopeful today!! Going to see my GI in boston today for a consult to decide what meds to put me on! Results of a recent colonoscopy revealed severely active chronic enteritis @ the anastomoses! Humira hads been mentioned but recently have been experiencing obstructive symptoms! Was a liquids for a couple of days and am now on a low residue diet! Afraid to eat anything with any amount of fiber... Wonder if she may put me on some sort of steroid as it will be a while b4 the humira is approved by my insurance? Which steroid has the least amount of side effects? Entocort? Budsonide(spelling) what is your experience??? Thanks! Oh and I am recently diagnosed but have had major symptoms for about 16 years....and several surgeries later

Day after Remicade and feeling pretty good.No uncontrollable urge to nap the day away.

Sending everyone positive thoughts.

Ann Morgan said:

NEWT: Hey, don't worry about the foods on your list. You can eat anything you want to. Some foods that make one person have diarrhea may make another person have constipation. It is good to have a list of foods that don't bother you. I eat a very small variety of foods....

I eat my healthy breakfast smoothie, I will eat cereal and milk. And I will eat macaroni and cheese. These are my basics. I gave up coffee and candy four months ago. Keep in touch. Keep eating those gummies, you should be able to eat something that makes you happy.:ylol:

Click to expand...

That is basically what I do, eat what doesn't bug my tummy. One annoying aspect though is that every six months or so, foods that weren't bothering me, will start. But out of the last 10-15 years there have been a few constants and while it's surprising gummies have never ever let me down.

We did a crapload of groceries today and hopefully most of it won't bug my tummy. We bought stuff we know for sure won't and stuff that I haven't eaten in awhile, but didn't bother me last time I ate it.

I hardly ate anything yesterday, which annoys my BF even though he gets why I'm not eating and I am trying not to repeat that today. We even plan to go out to dinner tonight and even if I can only order some cheesy garlic bread, that's what I'll do!

I have had a good few days as I have taken leave from work for a week and it feels so good being away from the stress. We have been sorting through the house getting rid of old stuff and got some nice new furniture and it has made me feel much better getting everything sorted. Today has been a rest day as my body gave up this morning and decided that was enough but hoping to go to Brighton for the day tomorrow to have a walk around the lanes.

I am also really happy as my joints seem to be doing well still achey but I am able to cross my legs which I haven't done in years. I was so pleased when I realised I shouted to my other half to come and look lol. I know it won't last forever but I am greatful for whatever amount of time my body is willing to give me away from the joint pain. My stomach is still not very good and food is not very appealing at the minute but I am managing and the weight loss has stopped.
Mentally I am feeling in a much better place as a few months ago getting out of bed in the morning was a struggle and as always had the wonderful support of the forum, I am so greatful for this forum and all of the people on it.

newt: I have not been able to eat seafood for years now. For some reason I cannot eat eggs at all. I cannot eat any raw vegetables. Cooked carrots are the only cooked vegetables that I know for sure I can eat. As far as fruit, the safest is the banana. The rest of the fruit family, well I am not sure I can eat any of them. I don't eat meat much at all, although I sometimes buy tilapia fish. I can eat any and all dairy products, hooray. I love my dairy products. I used to eat all kinds of candy and none of the candy bothered me at all, but I chose to give it up because I suffer from anxiety and candy and coffee are both stimulants. As far as restaurants I had a disaster recently when I had to fly out of town. I was with my sister and niece at the airport. We ate there. I ate some foods that I knew were going to really bother me ( stupid, but I was hungry ! ). So about 1/2 hour later I was running to the restroom. All of my lunch ended up in the toilet, gross but true. On the way back from my trip I ate a large chicken salad sandwich. I was on the plane for about 1 hour before I had to run to the bathroom and have diarrhea from that ! Thank you for sharing with me. Sorry this is so long, yikes.

I was misdiagnosed in the late 1990's
I had an anal fistulectomy in 1992
I had my gallbladder out in 1995
I started having diarrhea in 1997
I had two rectal abscess surgeries, 2002 and 2009
I was properly diagnosed with Ulcerative Colitis in 2006
I first took Asacol and Questran. Now I take Lialda and Questran
I started to have bad constipation in May 2014
I had a colonoscopy with my new Gastroenterologist in August 2014
I am now waiting for the biopsy results of that colonoscopy
I also take B12 vitamin and D3 vitamin

:sign0085:

panda: Thank you for posting. A lot of folks don't understand that when we suffer from a chronic illness ( our physical health ) that we also suffer emotionally ( our mental health ). It is sometimes a vicious circle. Don't give up hope. Hope, for me, is the most important thing in my life. If I have hope, then good things will follow. You are a very, very strong person. I could not do all that you do. Taking care of yourself is not selfish, it is being assertive. And being assertive means that we are getting our own needs met. Please take care of yourself.:Flower:

Feeling cold and feverish, really tired today... had an allergic reaction to salt water taffy last night, probably shouldn't pick taffy from the bin with the hazelnut taffy ... had to take benedryl and was out like a light by 9pm... The urinary tract infection seems to have subsided although my stomach is still achy... might leave work early today just so darn tired. I dont know how many crohns sufferer's work or don't work but I really wonder how anyone holds a job while feeling so crappy so much of the time

Sherada: I used to work, but I don't any longer. I got let from my job due to "workforce reduction" in 2009. But I also applied for Disability in 2011 and I won my case in 2013. It was terrible while I was working, always running to the restroom with my diarrhea. Always afraid I would have diarrhea in my pants at work. And, OMG, I even had to go out of town for business trips for my job! I don't know how people work either when they have so many terrible symptoms of the Crohn's. They are very strong people. Although I have other health conditions that were taken in consideration during my SSD case, my Ulcerative Colitis was one of them. Stay Strong and keep in touch.

Ann,

Believe it or not, I used to be a real foodie. I'd even started to cook on a grand scale.. something I'd avoided for ages due to my complete lack of patience, but crohn's sort of killed "foodie me".

I date/live with a chef... I love him to pieces, but it's also a fair amount of torture for him and me. He's like a child in the grocery shops running up to me with some food item and a well-thought out story about how he'll prepare it for me, only to be told about 75% of the time, "Babe, I can't eat that".

It's taken me 2 years to convince him that just because *I* can't eat something doesn't mean he shouldn't buy it for himself.

IofNewt said:

It's taken me 2 years to convince him that just because *I* can't eat something doesn't mean he shouldn't buy it for himself.

Click to expand...

I tell my wife this as well.She feels guilty eating something she knows I can't.I'm happy she cares so much...but,geez...of all the things CD puts us through,I can handle her eating something 'forbidden' to me and feel good about her enjoying it.

today, I'm tired, just spent 7 hours in emerg - trying to find out if I have pancreatitis again. Thankfully not, just have a problem with my gall bladder - I would like a couple of days that nothing goes wrong from this foolish disease please.

Today, I feel defeated, mentally and physically. I haven't had Humira in 3 weeks thanks to my insurance. We had a cold front come in and drop temp over 40 degrees over night and my entire body hurts. Talking with my boyfriend, I admitted how I feel. I conceed, throw in the white towel. I can't be strong anymore. I am not strong. I am in a lot of pain and I can't deal anymore. Don't misinterpret what I am saying, I am not going to cause harm to myself, I just don't know what to do anymore. I am seeing a rheumy for the first time on Monday. I think I am going against my convictions and risking addiction again and going back on pain meds. I am sure that sounds over dramatic, but the last time I withdrew off of them, I promised myself not to do it again, and I haven't. But I can't do it anymore. I need clarity. I need to be able to focus on getting better, and I can't if all I can do is lay in fettle position in bed. Anyways. Thats how I am feeling

Frustrated, depressed, and fed up. I've finally gotten over this couple month long hellacious skin disease that I was struggling with all summer long all the while having more downs than ups with my Crohn's. For the last bunch of weeks I just haven't been able to shake this gut rot that keeps coming and going through each day. Lately, I get up in the morning feeling okay, get some breakfast and feel a little better only to slowly get worse throughout the day. Nights have been just lousy. I stay up late tossing and turning when I should be sleeping. I went back to work a few weeks ago too (I work at a tech college) and I know I haven't been pleasant at all. That makes things all the more difficult as I work directly with students... and trying to teach and play nicely with others has been less than easy. On top of things, I've borderline hated my job for about a year now. Coming up this Thursday I see my doctor along with talking with potential opportunity for a new job. Honestly, it's almost like waiting for Christmas. Also honestly, I've never really liked being poked and prodded... so it's super awesome having this disease. I've never enjoyed going to my doctor even though I know I need to. This time it's different though. Never have I been there showing this level of symptoms. Sure, I've been in the hospital a couple times for it, but my symptoms have been relatively okay (or okay enough) over the years. Since everything has been so awful I'd be tickled pink to go see my doctor, have him look me over and say something along the lines of, "Oh! We just need to change your meds a bit!"... even though that won't happen. I won't get into everything that I've been dealing with on my house, but it's also right up there.

Today I feel frustrated, depressed, and fed up because I have several reasons to be and it's all piling up lately.

neohic: I understand about your depression. I have some physical illnesses in addition to some mental health issues and I have no doubt that one has lead to the other. I see so much of myself when I read what people write here. Depressed, fatigued, overwhelmed, angry, disappointed. We just want the vicious circle to stop, or at least slow down for a while. Take care of yourself and keep writing.

Saturday was actually pretty good. Went out to hairdressers for s trim. Had lunch with my mom and didn't visit the bathroom 800 times... well there was still a lot of pee, but that's ok!

But today is a totally different story. Feel like crap. Plus my landlord is being a douche.

newt: 20 years ago I was a vegetarian. I ate very healthy and I took interest in purchasing and preparing my meals. I walked 20 minutes every morning before I had to go to work. I rode my bicycle every Saturday and Sunday. It was the healthiest time in my life. I lost a lot of weight too. Sometimes I think back on it and I wonder.......HOW DID I DO THAT ! Now I suffer from mental health issues and physical health conditions that are numerous and tiring. Now I just want to get a good nights sleep and not feel tired all of the time. It's pretty bad that my biggest dream is to sleep for 8 hours in a row and wake up refreshed and feeling great.

afidz: it sucks that things are so bad right now for you I definately understand about the insurance company and Humira... it took me three months to get the medication from doctor prescribing it to my door and then last month they rejected it again but I found out that my pharmacy was trying to fill the loading dose again for some reason. Hang in there I know things are just really crappy sometimes... if the pain meds can help don't beat yourself up for going on them I'm sure anyone would do the same in your situation. Do you have anyone to be with while you feel so crappy? even if I feel like I need to just be in fetal position i'll have my fiance sit on the bed by me until i pass out sometimes its just nice knowing they are there supporting you. I hope things turn around for you soon

Anyone: Okay, I have learned more about my Ulcerative Colitis here on this website than in the 8 years since I was diagnosed ( and I have been having symptoms for 17 years ). Why can't they scope the small intestine ? I have heard about that camera pill more than once for the small intestine. I know some of the parts of the digestive system, but I guess I will have to do more research on the small intestine. I suffer from beginning to end: I have the acid reflux, the Ulcerative Colitis and hemorrhoids. Yikes.

I had a colonoscopy with a new doctor on August 21st. I received my results today. The results said : Findings: Mucosa: Normal mucosa was noted in the whole colon. There were no AVM's, polyps, masses, evidence of colitis or other abnormalities seen. Retroflexion of the scope revealed nothing remarkable. Random biopsies were taken throughout the colon. Impressions: Normal mucosa in the whole colon. Final Microscopic Diagnosis: Colon, Random, Biopsy: Unremarkable colonic mucosa. No dysplasia or malignancy identified. Comment: In some patients with long-standing IBD in remission (or with treated, quiescent IBD) the colonic mucosa can revert to a normal histologic appearance. No dysplasia or malignancy is identified.

Does this mean I am in remission ? I had diarrhea from 1997 through April 2014. Then I started to have severe constipation. I am still having constipation, but it is not as severe as it way in May 2014. My doctor did not schedule a follow up appointment for me and him to discuss the results and treatment plans etc. He had an office gal just call me on the phone with the results. She said the results were normal and the doctor wanted me to go off of my meds. I said I cannot go off of the Questran because I get sick if I don't take it. She called back and said the doctor said I could stay on the Questran. I went to their office to personally pick up the results of the colonoscopy and biopsy today ( I guess they will eventually get to me in the US Mail too ). I have another appointment with him on October 22nd. I want a Bile Malabsorption test. I will have to see what he says. Thanks again for listening.:sign0085:

Adfiz - I'm so sorry you are having such a tough time you really deserve a break, I hope things take an upward turn for you soon and keep on that path. *hugs*

Hi everyone . Haven't checked in lately...but here goes ! Yesterday was my Remicade finally !! I totally needed it as I was going downhill fast. So much time in the bathroom and in so much pain everywhere ..and the fatigue ! Ughhhh I had theeee worst" D" yesterday and last evening after my infusion. I keep hoping it was the drug attacking my gut ? Anyhow today I do have more energy and feel less pain overall . Fingers crossed I can keep from having any surgeries. Haven't eaten anything but a Twinkie and 2 cups of coffee so far yet though and it's past noon . LOL
Had to also tell my fellow sufferers about the "find" I made recently. It's a product called Poo-pourri . ( Ordered it on-line) It's a liquid you spray into the toilet before you go and this is the first thing in all my time of having this dreadful disease I have found that genuinely works ! I have been embarrassed beyond words through the years. Just thought I'd put this out there for anyone interested. God Bless

Ann: That's awesome! I would say that means you're in remission! How do you feel tho? Hope everything is going well, thanks for all your support its really great how active you are on this forum.

Gram: I hope things clear up for you soon... I have heard of poo-pourri I haven't tried it though if you get a chance and need a laugh you should watch the poo-pourri commercials on youtube.

As for my check in: I'm doing pretty well this week has been pretty good I have more energy and only have had some small stomach aches... took my dog for a walk yesterday and i think it was really good for both of us.

First off Ann..amazing news. But just because they didn't see anything if you are having troubles there are things amiss ? Hope you start feeling better . I am here to listen and send my best wishes.
Sherada..good for you walking your doggie. I have 2 a Chi-mix and a Schnoodle and walk them daily a few times if I possible can...albeit sometimes they are the ones taking me for the walks. LOL Only thing that keeps me from laying around feeling sorry for myself lots of times. My hubby does help but I try to take them as long as I'm able. They are my little lovey boys !
I totally agree with your advise to afidz. Taking pain pills is our right and suffering needlessly isn't good for our physical or mental health. It's not addiction if you truly need to take them for legit reasons.
Oh and the Poo-pourri commercials..I have actually seen them and I was so amazed I had to try the stuff. Hilarious !!! Stay strong and well !

Today was a low day. After re-starting antibiotics recently due to an abscess, my "window of opportunity" from the first urge to "Oh crap, it's coming" is greatly reduced. I usually don't leave the house until after my 2nd BM to give myself some guard.

Decided to go meet my wife at her office for lunch. As I'm going up the elevator, the first urge starts. I start breathing, knowing that I'm two floors away. Then I start thinking about her office uses a shared bathroom, so it's locked. On the next floor, the elevator stops and someone gets one.

Then holds the door. And holds it... and holds it... the exact opposite of what I can do at that moment.

At the next floor, I run to the bathroom door and text her to meet me ASAP to let me in, but the damage had been done.

Went back home (I work from home), showered, changed, and was grumpy for the rest of the day.

sully:

When I was still working ( an office job at a bank ) I had an accident right before I was to start work at 7am. We had a parking ramp across the street from my job. The ramp connected with our high rise building through a tunnel underground ( sort of like crossing the street, but you are underneath the street ). Anyhow, I was half way through the tunnel when I felt the urge to have a bowel movement. It was what I called " emergency diarrhea". I tried not to panic and I tried to calm down and breathe. I KNEW there was a restroom at the end of the tunnel, just a short floor down a little elevator. I tried my best to make it to that restroom, but it just didn't happen. I was in the tunnel and had diarrhea in my pants. Other folks were walking through the tunnel on the way to their office jobs. I acted calm and got on that elevator going one short floor down. I went into the restroom ( it was a single restroom, like a handicapped restroom, so I could be in there all alone ). I don't know how much I can say without getting too gross. But I had to take my slacks off. Take my underwear off. I had to clean my body off. I had to wash my underwear in the sink. I had to check my slacks and shoes to make sure there was no poop on them. I dried my underwear the best I could with some paper towels in the restroom. I put the underwear back on ( they were damp, but not wet ). So, I was all cleaned up ( my body and my underwear ). I went over to the main elevators, I pushed the button for the 8th floor ( the floor I worked on ) and I actually went to work ! I did not go home ! Well, that shows you how dedicated I was to my job ! I hope no one noticed anything different about me that morning in my department. I DID get counted as being tardy for showing up late that morning. I cannot believe I even went to work and that I just did not turn around in that tunnel and just go home. Well, that is my gross story.

But I have had many, many, many close calls over the years. I actually wear the large, long Poise pads every day now just in case of a close call diarrhea accident and / or an incontinence situation. If I wear the pads I have some sense of comfort because if I start to just have a little diarrhea coming on before I get to the restroom, the pad will absorb it, and not my underwear. Well, that is TMI that is for sure.

I think I have had two or three other occasions where I had accidents and I was not at home. Before I even knew I had my disease, and before any medication, I was sick all of the time. I even went on a trip to San Francisco in 2001 with my sister. She remembers fond memories of the trip......and I remember how sick I was ! I had diarrhea and vomiting and I was miserable.

Thanks for listening to my gross story. : - 0

Today I feel nervous and drippy. See, tomorrow I go and see my doctor to discuss how I've been doing lately. Unfortunately we have much to discuss and, while I was looking forward to it a couple days ago, that's now changed to the thought of potential bad news. As for being drippy, I picked up a really bad cold. Took today off work (which is weird because over the six years at my job I have called in sick only three times with two of which being over the last couple weeks) and have been chasing my nose all day. I'll most likely be enjoying this for the next couple weeks. Always one thing or another...

I slept for 8 hours today. After sleeping 8 hours last night, too. Sometimes I can't believe how fatigued I am after doing so little.

I am always afraid that if I sleep in late or nap on the weekends that I would have trouble sleeping at night because that used to be the case when I was a little less sick (ten or more years ago now), but that fear is never realized.

I have been trying to keep up with everyone, or at least keep up with everyone's expectations of me...and I am exhausted. I finally saw a rheumy this week, and I did get pain pills, but they don't help. Whatever is going on with my bones and joints is getting worse. My left leg couldn't bear any of my weight this morning so I didn't make it to the bathroom...thats always fun. Sometimes I just want to tell everyone to eff off and lay in bed and watch sad movies.

I went to my Rheumatologist recently too, or maybe I should say I went to see the Physicians Assistant at my Rheumatologists office. Maybe a person has to be rich and famous in order to see the "real" doctor ? The PA gave me three lidocaine shots in the left side of my neck and she is referring me to a Pain Management Specialist. She talked about Botox. My Primary Care Physician sends me to a Specialist who sends me to another specialist ? Say What ?

I was informed by my rheumy that pain killers are going to be classified under schedule 2 starting sometime in October. That means that only certain doctors can prescribe them. This is nation wide. I'm being sent to a pain management specialist as well. The government is trying to cut down on abuse and addiction

Bummer about the pain pills ! I was on hydrocodone for three months once. I called them my "happy pills". I was happy for three months.

I saw a TV show once that was filmed in Florida. The whole show was about all of the pain clinics in Florida that prescribe all sorts of pain pills to just about anyone. There are hundreds of these pain clinics. People stand in line to get into the buildings. Customers were even coming in from out of town to go to these Florida pain clinics to get prescriptions for pain killers. So what about these clinics in Florida, what is the government going to do about them ?

I bet doctors will still be prescribing plenty of pain pills to the rich and famous too.

I don't know about the rich and famous, nor about the pain clinics in Florida. But I do know that pharmacists were starting to question the patients as well as the doctors because they were getting in trouble for aiding people's addiction. It's not hard to see a pain specialist, they are just doing it that way so that they can manage the way that they are used a lot better, reducing the chance of addiction, abuse and misuse. Yes, it is more of a hassle, but I get it

My wife broke her wrist four days ago.I had to bring her to the ER Tuesday night,and got home early Wen.morning.ER visits are never a quick thing.I've been taking her to see specialists for a change,huh,how about that.

I'm happy to be there for her for a change,but I am even more exhausted than I normally am.She knows how easily I tire and is feeling guilty.I laughed and said "your telling me about feeling guilty for needing help?"

I told her it is only for six weeks or so and we will manage.This has been a bad Summer for me. She is stressing about all that needs to be done for Winter that should be done by now and isn't.

I'll do the best I can,what else can I do?

Dave, it will all get done, just not today cut yourself a break and hug your wife. Happy B-day next week and I hope that your wife feels better soon and that you are okay too!

How am I feeling today ? Confused. I have a Rheumatologist. I saw him back in 2007 for neck pain. I had Physical Therapy. Well, since then my neck pain and mobility has worsened. I am currently having Physical Therapy on my neck. My Rheumatologist wants to send me to a Pain Management Specialist so that I can get Botox shots in my neck. Has anyone ever had Botox in their neck ? I know that doctors use it to treat migraines now. I don't even know if my health insurance company would cover Botox. I don't know if I even want to have the Botox shots in my neck. I guess I will call my Insurance Company next week. The Rheumatologist gave me the name of a Pain Management place but when I called they said they did not take my insurance there. Now I have to look for a Pain Management place all by myself.....or have my Insurance Company look for one when I call them about the Botox ? Maybe I can still go to a Pain Management place but have some other sort of treatment for my neck other than Botox ? I want relief for the left side of my neck, but at what cost ? Botox is dangerous, and then if my insurance really does cover part of it, what part would I financially be responsible for ? Well, I am tired thinking about it now. : - 0

The beautiful thing about pain management clinics is that they don't have any limits as to how they can treat your pain. If you are nervous about Botox, tell them and they can approach it differently. You don't have to get anything you don't want to. In the end, its your body and you are the only one who knows whats right. You have to be referred to a pain management clinic, so I would call the rhuemy back and ask them to refer you to a different one, they should have no problem. Also, in re: to insurance covering Botox, if it is billed as medically necessary (not for vanity purposes) then insurance should cover it. I hope you start getting everything resolved, I know it seems like you are being given the run around right now, but it will all work out in the end.

I'm feeling okay today... stomach feels fine but for the past few weeks i've been having on and off LOUD stomach noises and gurgaling... not sure if anyone else experiences this. I've had it on and off throughout my life but not in the past two years or so... not sure why the sudden need for my stomach to speak up but its loud and proud people accross the room can hear it... its really embarassing especially when i have to be at work and in quiet meeting rooms :\ ... i'm sure everyone is thinking im about to shit my pants but I'm not it just has a mind of its own and i dont know what i can do to make it stop, it doesn't seem to be effected by what i eat or time of day... it just starts up... I guess things could be worse...but it makes me really self conscious and gives me anxiety about going to quiet places

I was referred to a pain clinic and went about 1 1/2 weeks ago with a follow up this coming Wednesday. The doctors (yes, 2 of them saw me) and we discussed a lot. I felt very comfortable with them and both of them know my GI very well. At the end of the visit they said they were calling my GI to discuss - more out of the box ideas on my disease as I have so much going on and still miserable. I really liked them and the next day was my GI appt and he said he had spoken to the doctors already!! Nice to have doctors on top of things. We are trying some different pain meds. I have a little hope.

Sherada: When I am having my teeth cleaned by the dental hygienist I can always hear her stomach growling !

I would not worry about what your co-workers think. A lot of folks have had diarrhea in their pants before but they would never tell anyone about it. Those people are not perfect, so they should not judge you.

Okay, so I was at a little Circle K gas station one day, a few years ago, and I really, really had to pee. The clerk told me that the restrooms there were not for customers, only for employees. OMG ! Also, my gas tank was empty. So, while I was pumping my gasoline I was peeing in my pants. I couldn't hold it ! Other folks were at the gas pumps too. I kept thinking...."they can see me" ! I am sure that they saw me pee in my pants. Well, there was nothing I could do about it. I had to pee. I couldn't control what the other people were thinking about me. Well, that is just my little story.

Take care of yourself. Hope your "noises" stop soon. : - 0.

afidz: Thanks for the info. I still have a few Physical Therapy appointments left for my neck. I am going to wait until all of those visits are done with before I choose a Pain Management Specialist. I have a little time to locate a Specialist that is in my end of town and one that takes my insurance. If I do decide on Botox I will call my insurance company first before I get the injection, just to make sure they cover it.

: - )

I feel like Crohn's can eff off today.

Hey I am new to this group, today was horrible! Had to go to urgent care for thrush mouth!

Still in the process of trying to get a diagnosis!
Next step SBFT,Sigmoidoscope,double balloon endoscopy and pill cam!


Love dogs by the way, I have two! Rescue dog and a full blooded pit! They watch over the grandkids like nannies!

Tamera: Welcome ! I am fairly new to this website. The folks here have a lot of knowledge and information on just about anything that has to do with Crohn's. I am so sorry that you had to go to Urgent Care, that sucks ! I hope that you find a diagnosis soon, sounds like you are getting the proper testing in order to find out what is going on.
The tests that I have had in the past are: upper GI, lower GI, Flexible Sigmoidoscopy, Colonoscopy and Endoscopy.


Ulcerative Colitis - diagnosed 2006, have had symptoms since 1997
Acid Reflux
Anal Fistulectomy 1992
Gallbladder out in 1995
Diarrhea started in 1997
Rectal Abscess 2002
Rectal Abscess 2009
Started having constipation in May 2014
Had a colonoscopy in August 2014 and it came back "normal"
Still taking Questran Powder and Lialda
I am going to talk to my new doctor about a Bile Malabsorption test next month

I was hoping to sleep in today but I guess it isn't in the cards. Woke up completely soaked in a full body sweat and shivering again. Sigh. I can't seem to get warm now. Is anyone else constantly cold no matter the weather or the clothing you pile on?

BlackButterflies - 90 degree weather today and I was rocking jeans and two long sleeve shirts - felt completely comfortable while outside otherwise always cold regardless of layering - oddly enough I find it's a bit easier to regulate heat at night following night sweats if I'm wearing no clothing (easier to get dry again imo) and just switch out blankets throughout the night keeping myself wrapped burrito style with additional blankets on top. childhood me would probably be proud I don't sleep like a normal adult and still "indulge" in late night blanket fort construction.

Not great today...kidney stone & C-Diff, not sure which is worse. So many crohns related problems the last month, infections. Was surprised to be sent home yesterday. Waiting on phone call from GI...So sick...

The fatigue is overwhelming this morning. My iron infusion is this Thursday and can't come soon enough. I feel guilty for, once again, not making it to work.

Stellarjess..don't feel guilty for missing work. Any one of your co-workers would do the same if they felt like you. I used to practically crawl to the time clock in the mornings at my job. I was a CNA in a nursing home night shift for 15 years. Taking off work was a major no- no there. No sympathy when dealing with that corporation. At times my knees would look like cantaloupes and if it wasn't for the residents bathrooms..which BTW we were not allowed to use...ughhhh !! It would have gotten very ugly. I finally had enough and had to apply for SSDI . I was granted that after the first try and even though it's not much it's better than nothing . I shudder at the thought of them reviewing my case . I imagine with the funds running out as we're told constantly by the media it would be easy for them come up with a way to say "NO MORE" . !!
I never had an iron infusion..they give me packed red blood cells when I get badly anemic ? I too am having that overwhelming fatigue and just had my Remicade infusion last Monday. I get sick on iron pills..you too ?
I can't imagine working anymore. I struggle just doing basic things here at home . Only outlets I have are grocery shopping (even that is starting to be too much my feet kill me less than half way through ) and Dr. appt.s . I would have someone shop for me but it's the only chance I get to see the world. Pretty pathetic...huh ?
I'm older yes ..but I have friends who are my age and enjoying the freedom of retirement and I can't help but feel a tad jealous at times. If they only knew how lucky they are to be healthy...to trade places for a day would do it for them. Sigh
Hang in there girl better days ahead..? Sorry for the long story.

Gram214 said:

Stellarjess..don't feel guilty for missing work. Any one of your co-workers would do the same if they felt like you. I used to practically crawl to the time clock in the mornings at my job. I was a CNA in a nursing home night shift for 15 years. Taking off work was a major no- no there. No sympathy when dealing with that corporation. At times my knees would look like cantaloupes and if it wasn't for the residents bathrooms..which BTW we were not allowed to use...ughhhh !! It would have gotten very ugly. I finally had enough and had to apply for SSDI . I was granted that after the first try and even though it's not much it's better than nothing . I shudder at the thought of them reviewing my case . I imagine with the funds running out as we're told constantly by the media it would be easy for them come up with a way to say "NO MORE" . !!
I never had an iron infusion..they give me packed red blood cells when I get badly anemic ? I too am having that overwhelming fatigue and just had my Remicade infusion last Monday. I get sick on iron pills..you too ?
I can't imagine working anymore. I struggle just doing basic things here at home . Only outlets I have are grocery shopping (even that is starting to be too much my feet kill me less than half way through ) and Dr. appt.s . I would have someone shop for me but it's the only chance I get to see the world. Pretty pathetic...huh ?
I'm older yes ..but I have friends who are my age and enjoying the freedom of retirement and I can't help but feel a tad jealous at times. If they only knew how lucky they are to be healthy...to trade places for a day would do it for them. Sigh
Hang in there girl better days ahead..? Sorry for the long story.

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Thank you for your reply Gram214. I can't imagine being a CNA with this disease! You are a hero for doing it!

I don't tolerate iron supplements at all and/or haven't found one that works quickly enough. My ferritin and iron saturation are the problem which is why I'm getting iron infusions instead of a transfusion (my hemoglobin is normal).

Thank you so much for the kind words, I hope you hang in there, too.

Already feeling grumpy today and I haven't even started work yet. I've got a scan on Friday morning that I get to drink a bunch of barium contrast. Last night I got a call from the hospital to ask a bunch of questions and give me prep instructions... didn't sleep all night just knowing what's coming in a couple days. Now I made the mistake of searching around looking for tips on getting the contrast down and it's just making my stomach turn. Not looking forward to this at all.

Neohic - Try not to stress too much, i know it's easier said than done but honestly the more you stress about it the worse the experience will be. In my experience, the barium type contrasts actually aren't that bad, I find them a walk in the park compared to the preps we have for scopes. Remember that google etc are full of bad stories because when people have a bad time they go online to try and find support or people with similar experiences, but when people have a good experience they just get on with things and don't write about it because they don't feel they need support . Take deep breaths, remember that however horrible it is it's just one day, by Saturday it will all just be a memory and you'll be able to move on and hopefully within a couple of weeks you'll have some answers and a way to progress.

^ Thanks valley. I think the worst part of it is I already know what to expect. Same test I had a couple years ago. I think that I'd rather be surprised at how awful it tastes rather than already knowing before showing up.

I know what you mean, I have a scope coming up sometime soon and knowing how horrible the prep will be is making me nervous, but think of it this way, you got through it last time, it might of been horrible, but you did get through it. I got myself a little nervy and scared before my last MRI, because I knew that the first one I had I really struggled with the contrast, but it turned out that the second one was better, same contrast but much less of it to drink, they gave me one jug that was about a litre, I drank about 3/4 of it and they let me stop and see if that was enough to get the images, it was (I have a tiny frame and had some bowel removed).. So it turned out I got worried when I didn't need to. You will get through it and you will be alright, deep breaths, be kind to yourself. Promise yourself a treat once your done, for example, I had my last MRI as an inpatient in hospital, and my boyfriend traveled 50 miles to spend the afternoon /evening with me and took me down to the hospital cafe to have a meal (I'd not been allowed off the ward before that because I'd been too poorly) and knowing he'd be there when I got out of the scanner made it a lot easier. You could promise yourself a movie you've been wanting, a meal you really like, a take away, anything that you enjoy.

I feel...lost. I don't recognize who I have become. My pain has taken over my life. I have typed this response over and over again because I don't really know how to explain how I feel or how to validate it, if that makes sense. I look down at my hands and wrists and they are so swollen, I literally don't know the back of my hand.
Good news is I was approved to start Remicade, I get my first infusion on Monday. I have a doctor appointment afterwards to go over all of the blood tests that my rheumy did 2 weeks ago. I am hoping that the blood work will answer a lot of questions and be able to give her a good place to start.

Crohn's Disease. Eating away at our bodies one day at a time. I make a move, it produces a countermove. But I'm still here. Don't know about tomorrow, and had some crappy yesterday's, but I'm still here today and that is all anyone can ask for. Pooh Bear asked a Piglet, "What day is it?". And Piglet answered, "Well, it's today". "My favorite day", said Pooh Bear.

Three hours of sleep and I am manic as all hell. I thought taking Pred in the morning around 9AM would help me sleep better at night. Guess not. Still haven't kicked this flare yet. I had my one year anniversary of bleeding from my stomach/intenstines/rectum the other day and realized I have had less than 2 months this year without daily bleeds. Feeling super positive and pumped again though. I feel like this time I will stop it and will go back to my normal functional self!

I am job hunting. I decided that I need to get a job in the same field but less physically exerting so I do not miss work. I have been off for a month now, and my position has been filled and I have been demoted. Before I left I was told I basically was not needed as I am anymore and if I end up in the hospital that's it. Kind of a slap in the face but part of that is my fault for thinking that a company really values anyone anymore. At least that company.

Upwards and onwards, keep pushing forward. Always move forward.

Confused and maybe a little upset. Had an MRI this morning... even got through choking down all three bottles of contrast... and I already got my results back. I guess it's good that things look as normal as they can, but I was honestly hoping to hear back that there was something definitively wrong. Been feeling real rotten for months now and was looking forward to hearing some kind of answer as to why. Not sure what's next now.

neohic...awww..after being such a brave soul and drinking that yummy contrast then yet. Just don't let them tell you nothing is wrong..if you feel that bad there must be a problem they're missing. You know your body best ..hope you get to feeling better !