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Posted 12/26/2011 8:49 AM (GMT -8)
I'm 23 years old and was just diagnosed at the beginning of December with Chron's disease after 4 weeks in the hospital. It started with pain in my lower right abdomen and I went to the doctors because I thought it was possibly appendicitis, I wish it would have been appendicitis. I had 3 ER trips where they just gave me fluids for being dehydrated from diarrhea, the doctors seemed to not think much of the thickening of my colon wall the CT scan showed and didn't perform anything more than basic blood tests... and then finally they referred me to a GI group who couldn't get me in for at least a month. At this point I couldn't eat anything without going to the bathroom 3 or 4 times even if it was a just a cup of applesauce. I'm a nursing student, and I don't know how I made it through 2/3 of the semester... but I did...

I got the luckiest break when my mom's friend who's son has Chron's was talking to me and she made a call to his doctor and told them it was an emergency to get me in. They wanted to get me in ASAP. I had an appointment Wednesday with the doctor, and he got me in for a colonoscopy the following Monday. I had to go for another ER visit the Sunday before for fluids because I got dehydrated again. Monday, the doctor couldn't even get halfway through the colonoscopy due to all the swelling in my colon. I was woken up and told they were directly admitting me to the hospital for IV steroids and hopefully only for 2-3 days. I spent two and a half weeks in the hospital over thanksgiving getting IV steroids, pain meds, and a number of other medications. Still had diarrhea. The doctors thought I was getting well enough to go home. I made it four days at home. Back to the hospital I went for another two weeks. They started the remicade infusion and a few days later I had another colonoscopy where they got through to the small bowel! They diagnosed me with pretty severe and active Chrons and put surgeons on my case just in case they would be needed, and that was scary. I didn't want to have surgery. Over those two weeks my diarrhea slowed down and I started holding in food longer and only went a few times a day. I was discharged mid-December to home and have been doing ok.

I lost almost 30 lbs in a little over a month and am hovering around 103 lbs. I have no muscle or strength. I look anorexic. I get tired from doing things for 15 minutes. It is very frustrating. My husband is wonderful and I don't know what I would do without him, but it is still very lonely dealing with this. I am stuck at home now. I'm still on pain medication, steroids, and a smooth muscle relaxer for spasms. I can't drive and have to rely on everyone else. I want to go back to work. I have to repeat my semester of clinicals. That was one of the most depressing parts is I was supposed to graduate this month as an RN, and I sat in a hospital bed as people posted on facebook from my class that they graduated, are getting interviews, etc. I was supposed to be doing that too... Now I wonder if I'll be ready in a few weeks and have enough strength to go, or will I have to take a semester off and graduated even later?

I'm having a hard time overall. I'm getting frustrated that I still hurt, I still can't eat a lot of things. When I got home I couldn't even open my pill bottles, go up a stair, and had to have someone with me all the time. I hate being scared to go out in public because what if I need to go to the bathroom and can't get there fast enough? And if I do get there it smells so bad, I have gas that just passes sometimes too that I can't help and it smells awful too. It's so embarrassing. It's so hard to think that this is for life now, it may go into remission but it can come back at anytime. I hate people keep saying you'll get better, you'll get better. Well, this is old to me already being sick all the time. When I'm at home alone I sometimes just cry because I can't do anything about this, and I can't get out and do things. It's not like I can call up any friend and ask them to come over and help me because they've been through it. the one person I do know didn't have it as severe as I do, although he did have good advice on a few things.

Don't get me wrong, I appreciate everything everyone in my life has done. It's made me look at a lot of things differently and appreciate more. But at the same time, this is so depressing and I feel so alone going through this. I have so many questions, fears, everything. I just want to be back to "normal" and it feels like it will never happen again.
Posted 12/26/2011 9:07 AM (GMT -8)
Hi Andi. I'm sorry you're going through so much right now. It sounds like a ton of stuff to deal with. Please try and focus on getting well now, one day at a time. It sounds like you received very good treatment (once you finally got to see a GI specialist) and now you need to heal. You will get a lot of support on this forum, including support from people who have gone through similar ordeals. Be well and take care. ~SB
Posted 12/26/2011 9:26 AM (GMT -8)
I'm going what you are going through too. I was diagnosed in June after a month of feeling unwell, I can't remember all my specific symptoms but I knew something was wrong. Ended up in the ER June 21st because my anxiety about how I was feeling and not knowing why, CT scan showed Colitis, Colonoscopy showed the Crohns a few days later. I've been on steroid since and they make my anxiety hell sometimes... my Crohns symptoms aren't very bad but my anxiety it which makes everything worse. I too still don't like going anywhere other than to a doctor out of fear even though I don't have many BM's a day. I've made numerous trips to the ER convinced something else was wrong, but it's my anxiety. I too was very weak starting out, I was anemic at the time but I've gotten better. Now I can thank the prednisone for my weakness. I too left my job, and I've learned sitting at home all day isn't helping me.

Know that you aren't alone. We've all gone through the same feeling and experiences, and we love to support each other, I don't know how I would have learned to cope with this had I not found this forum.
Posted 12/26/2011 10:52 AM (GMT -8)
It's nice to have people to talk to that have been through some or all of this before. Are there things that you did to build up strength again? I'm used to be active and doing things everyday like school or work and being in the hospital and then sitting at home waiting to get better is like hitting a brick wall. My husband took me to the mall and I had to get a wheelchair because I couldn't walk long distances. I just hoped I wouldn't see anyone I knew because I don't want to have to explain.

My GI doctor said he thinks I should make a full recovery... I know I won't know what that means for awhile yet. But I hope he's right. I've had two doses of remicade, which seems to be working. For the first time ever I look forward to needles coming at me. I'm on percocet for pain, and was on morphine while in the hospital and I'm worried I'll become addicted to the pain medications, but I still am getting pain after I go to the bathroom or when I eat and there's no way to not take it yet. I've had kidney stones since I was 18 and I usually deal with pain well, but Chron's is so different from that pain wise. the pain can be burning, stabbing, achy, spasms. It's been difficult to deal with because it can be so different from day to day and hour to hour. I can go from feeling like I can do something like grocery shopping and feel good to a half hour later just needing to lay on the couch and rest.

I have so many questions, and I do my best to cope and not take it out on the people around me because I know this is hard on them too to see me sick. I get so tired of hearing people tell me I'll get better soon. I just think to myself "you don't know that." I could be like this for another year or three... I hope not, but this isn't a disease with any specific pattern it follows.
Posted 12/26/2011 12:51 PM (GMT -8)
Hi Andi,
Sorry that you are suffering. I'm not yet on Remicade but have been on pred for more than a year and a half now and know how to feels. I used to be highly energetic but when Crohn's hit , I started to become very weak. Getting B complex injections every other day for two weeks were a life-saver for me though they were prescribed by an awful nutritionist; however, I owe him a lot. They made a difference and I can do things I thought I won't be able to do gain: driving, walking for a distance without fainting and even standing properly without fearing of falling. Also, ask your doc to take a multivitamin and drink a lot of fluids and juices (if you can tolerate it to make up for what you have lost). Drink Ensure and other supplementary drinks. By time, they will give you energy.
Hope you feel better soon:)
Take care!
Posted 12/26/2011 2:50 PM (GMT -8)
Hi Andie. It's great that you're on Remicade, and I'm confident you will make a full recovery too. Be patient. It sounds like you were very sick, and it's going to take time to heal the colon, and for you to gain weight and strength. Perhaps you shouldn't commit to doing your clinicals this spring either, just in case you're still not ready to work that hard. I'm so sorry that this illness has temporarily derailed your timeline. You know that saying, "man plans and God laughs?" Sometimes life is like that. The remicade should start making a difference in the next few week from what I've read around here - you might want to make a post just about that.

I wonder if your history of kidney stones is related to you having Crohn's? Perhaps you've had a subclinical case for these past few years. Maybe the remicade will mean no more kidney stones for you!

Talk to your DR about your nutritional needs too. If your bowel was so inflamed and damaged, it is likely that you are low on vitamin D, probably iron and perhaps B12 also. All of these can be taken along with your meds. Iron and D are available over the counter. As your blood chemistry becomes more normal you'll feel less fatigued, too.

{{{{{HUGS}}}}}
Posted 12/27/2011 7:27 AM (GMT -8)
Hi Andi,

there is life after diagnosis.  My husband was diagnosed at 18, he's 42 now.  He was on his way to West Virginia to play football and led an active life when diagnosed.  He skiied, surfed, playbe footbal and was always out and active.  this crushed him. 

His diagnosis got him down, but not for too long.  He started by introducing foods and making a safe food list and a BAD food list.  there were times that he thought no food was ok, but that changed.   Learning what worked and didnt took time, patience and a lot of time at home in the bathroom.  First on his list was to make sure his friends knew the deal, they protected him, looked out for him and accomodated him as much as possible.    Even today going places he avoids traffic times, has 2-3 routes mapped out wherever we go so he can hit alternate side streets, etc to get around traffic is a nightmare and major concren for him.  Out to eat we keep it no more then 15 minutes from home and always call ahead to know the toilet/guest ratio.  We tend to be the big partiers and host things at our house so he can eat, drink and be merry close to his commode and in the comfort of our home.  He learned his pain was mostly in the am, so avoided scheduling stuff first thing in the day.  

He found meds like Nulev (helps with urgency) this quick melting tab on the tongue  will INSTANTLY slow down all the sphinters in your body and buy you some time to find a restroom. 

After years of 15 pills a day, steriods and lots of trial fad diets, like micro and macrobiotics, supplements, gluten free ( none of which worked for him)  We found Remicaid, an IV infusion he gets every 6 weeks.  while not a cure, my husband is symptom free, toilets 3-4 times a day vs 15-20 and has had significant healing in his intestines and colon.   He's been on remicaid for 2 years and it has changed our lives for the better.  We are so glad he is on it and have so much more freedom then ever before.

Our advice is to hang in there, go to www.ccfa.org and learn more about the disease, join us in fighting for yourself and a cure and research different approaches - I would suggest discussing remicaid w/ your GI doctor.  Johnson and Johnson has a patient assistance program and can help you pay for it.  Good luck and hang in there.  I am proud of you for coming on line and starting to share your story.  Communication is key and so is education. You will be ok.  Remember stress aggrivates it so take a breath and go one day at a time.   You will be able to have relationships, friendships, work, have fun, fall in love and do all the things you wanted to.  Just stay positive and take one day at a time.

Fighting for you and me! 

Posted 12/27/2011 11:06 AM (GMT -8)
Hey Andi,

Sorry your not feeling that great atm.. I was just DX with CD , will be 2 years this March. I can tell you that this site and the awesome ppl that are here will help ya deal with all that your going thru. I remember when I first got told. I cried for days, Was surfing the web and just happen to come across this site, I posted and had so many caring ppl respond within just a short time. Made me feel A Lot better knowing I wasn't alone in all this.
I too had Just finished my schooling for MA, However I didn't get to do the externship bc I was in the hospital, The school dropped me. I am tryin now to get them to let me do the externship since i did pay for the school.
Just don't give up...Smile
Posted 12/27/2011 3:02 PM (GMT -8)
Hi Andi, sorry you're having a rough time lately. You could always ask your doctors about things like ensure/fortisip etc as an aid to help build up stamina/weight and also a powder called maxijul which you can add to anything, sweet and savoury and it adds calories to help put on weight. Eat plenty of protein as these aid healing and help body recover quicker. If food starts to cause pain and D, then you could look to eat food that is more low residue as it takes less digesting and really helps with the pain reduction.

Hang in there as it sounds like your doctors are on the case. Things don't suddenly go back to normal overnight, you have to give your body a chance. If that means taking longer to graduate - then although a disappointment a few months delay in the big picture of things isn't that bad, but I know that seem like it at the moment. Let yourself get back to fighting fitness and then you can complete your course and get the position you want without worrying about whether you will be up to the job.

It is hard and scary and down right lonely at times but I look at it as a fight between me and my immune system and I decided many years ago that I was going to win. That's not to say there aren't times when I think it is all too much pain and living hell but I am not ready to give in yet for quite a few years yet. Keep fighting and hope things improve quickly for you.
Posted 12/27/2011 5:24 PM (GMT -8)
Thank you all for your replies. I really do appreciate it and everything you have to say. There definitely is a lot of support here and I'm glad I found this site!

@Kazbern - I found on a site that Chron's puts you at more risk of having kidney stones and I've been wondering now if the egg showed up before the chicken or vice versa. My dad always got kidney stones too and they never found a reason or cause for his or mine, and he tried everything for his. I wonder if he has Chron's and doesn't know it. He can't eat certain things and knows it. Like chocolate sends him straight to the bathroom in 10 minutes but he's never had a flare per say... at least nothing like I've had. Before these past couple months the only thing I noticed if I would get really stressed with school I would have to go to the bathroom, but only once not 20 times a day.

@waiting for a cure - I think it's called the remistart program? they gave me the paperwork I have to send in at the doctors for it. My mom's friend told us about it, and it definitely is a life saver with the cost of the treatments. I'm hoping the remicade works well for me and for a long time. I'm glad it's worked for your husband so well! It gives me hope... and I hope it works for a very long time! I'm nervous about the 4 weeks in between these two loading doses. I had so many setbacks before they started the remicade, and it seemed really help within a week of the first dose. I'm just nervous to think that I'm getting better and then have a setback with it. I'm not good with the unknown which is all this disease pretty much is. Definitely going to have to work on going with the flow... literally and figuratively. I definitely agree with the having people over and comfort of your own commode. There's nothing worse than thinking you'll go over to someone's house and decorate their toilet if you have diarrhea. That's embarrassing and most people don't ever have to think of that.

@ stripey- They told me it would take awhile to even get back up to 115 lbs. No one ever said what "awhile" was. I thought I'd eat and I'd have some more energy, and the remicade would work a little quicker than it has. I guess my expectations were too high. I've always been able to just force myself to get things done when I've been sick, even with kidney stones I could work. I'd take Ibuprofen and wear a thermacare patch and I passed a 6 mm stone that way. I'm realizing how sick I really I am I guess... I've never been really sick and it's a big learning curve. I don't think of myself as sick, usually I think I'm just miserable because I can't do anything physically that I used to or want to do. It's hard to change my mindset. My husband and family saw me sick in the hospital, and how I've changed physically. It's easier for them than for me because I pretty much didn't see myself until I got out of the hospital. It's hard to explain. I guess I have to think of myself as sick instead of what I can't do now. That sounds so dumb and easy, but I just don't see myself as "sick" but I am and was very sick. I know they don't usually keep people in the hospital for days let alone weeks... I don't want to try to do my schooling and just get myself sick again. I won't be able to care for patients when I can barely stand for 20 minutes right now... and I only have a little over two weeks until the clinicals would start and I have to have the strength by... I'm starting to highly doubt I will be ready. And as much as I will hate the decision and kick myself until it's over, might take the semester off to get better, figure more of this chron's thing out, and finish my degree. I never imagined I'd be even thinking this.
I have been drinking ensures, and on occasion the gross boost fruit things. They haven't said much about supplements surprisingly, and my doctor was surprised that I was so weak at my follow up appt after I was discharged from the hospital. I also did not see the doctor from the group I see in the hospital... there were different doctors that did rounds from the group in the hospital...

@minnietoty- How long did it take you to feel like you started to get your strength back? What did you do to get it back? My legs just start to feel like 100 lbs each after walking awhile. I feel like an old lady not being able to do long distances. My back gets so sore when I stand. I don't know if a lot of people get this? I asked about physical therapy in the hospital the 2nd time around because when they discharged me the first time I was very very weak, and didn't realize it until I went to go up a stair and sat down instead. They pretty much brushed it off. I don't know what I can do other than just get out when I can and do what I can around the house...
Posted 12/27/2011 5:27 PM (GMT -8)
Andie, call your DR and have him/her read you the results of your bloodwork to see if you are anemic. Also, if they have not tested your vitamin D levels get them to do that. It is common to be low on both of these essential minerals and vitamins when you have active Crohn's. And both of these conditions cause terrible fatigue.
Posted 12/27/2011 5:39 PM (GMT -8)
I was anemic when I was diagnosed. My Hemoglobin was around 10. I was in the hospital for a week and when I got home I had zero energy, I too couldn't stand for more than a few minutes, and I was light headed a lot. Even after 6 months I'm still not as strong as I was, but then I left my job of 6 years which I was on my feet 8 hours a day in a fairly busy environment and now I sit at my computer way way too much. I've also been on Prednisone the entire time, which doesn't help either. So I've started walking around our neighborhood.

I'm assuming they did blood work during your ER visits and your stay and should have told you if your hemoglobin was low. Because there can be blood hidden in our stools.
Posted 12/27/2011 6:10 PM (GMT -8)
I found out today that he is out for the next week, and it's a lovely day because I needed a refill on my pain meds and they were very reluctant to even give me a couple pills for the next week until he's back in the office. I'm going to make an appointment for next week to get that straightened out, and I'll ask him then. I know they checked my regular blood work last time I was in the office, I doubt they checked my vitamin D and B12 levels because I don't remember him saying anything about that. I feel like I'm going to live at that office and bug them... I just have so many questions and concerns as to what is happening or not happening for that matter.

Thank you for the advice!

I think my doctor does an awesome job, I think there's been a lack of communication between the doctors that saw me in the hospital and him as to what has gone on. It's hard for me to remember things lately and I do my best when I see him to tell him everything and ask all my questions, and thank god I have my husband to go with me to remember what the doctor says... I've noticed my attention span floats in and out so much anymore and I have a hard time paying attention to a lot of things, especially listening. Does anyone have that problem as a side effect with prednisone?

I also have a couple gross questions... Am I the only one who gets a discharge or drainage (I don't know what to call it) from their butt? It's so gross, and I haven't seen on any site on chron's about this. It gets worse before I have to go to the bathroom most of the time. Is it because my colon is still healing and its the drainage from the ulcers? And what does a light tan-yellow colored stool mean? Am I not eating something or is something else possibly wrong with me that the color isn't normal? I feel like as a nursing student I should know something about this but I don't.*
Posted 12/27/2011 7:37 PM (GMT -8)
Sometimes I write down all my questions so I don't forget when I go to the doc. It helps, and sometimes I take notes there because I forget things.

I do have a horrible attention span when I'm on prednisone, but mine is because I'm so wound up I jump from one thing to another. Other times I'm just tired and depressed and it's hard to concentrate.

Hang in there. Hopefully you'll be feeling better soon.
Posted 12/27/2011 8:03 PM (GMT -8)
Hi and welcome to HW!

Sorry you've been going through such a rough time in getting diagnosed and having so many long hospital stays. I hope you'll start to feel better and better, so you can finish your studies and get on with your life.

You mentioned embarrassment about smelling up public bathrooms, so I thought I'd let you know you can buy "Just A Drop" at your pharmacy. You literally put 1 drop in the toilet water before you go, and it keeps the smell in the water. It is totally natural too, and fairly cheap. I carry a little bottle of it in my purse always.

Also, I'm not sure if someone already mentioned this, but you might want to contact your school's disability office. I think you are definitely entitled to some accommodations, especially with everything you've been through, and since you now have this darn illness.

I'm glad you found us. Take care!
Posted 12/28/2011 5:56 AM (GMT -8)
Andie, the discharge you're seeing is probably mucous or liquid stool. I know it's yuck, but it will go away when your inflammation is better. Did your DR say whether you have inflammation in the rectum too? If so, you might consider rectal meds because the oral ones aren't going to be that effective there. Although since you are on remicade, a systemic drug, it should resolve inflammation in your entire colon I suppose. One of the members of this forum has a quote in his signature that says "never trust a fart." Indeed.

The inability to concentrate has probably got a lot to do with the fatigue. Plus you've just gotten a really serious medical problem diagnosed and it's not a bit surprising that there are going to be emotional side-effects as well as physical. It's great your husband is able to be so supportive and helpful. That will be a big benefit to you.
Posted 12/28/2011 6:56 AM (GMT -8)
I have to make an appt to talk to a lot of diff people at the school, and if i could get accomodations to finish sooner that would be great. I dont know how accomodating this school is, they havent been so far. I'll find out soon enough i guess.

On my last colonoscopy it showed my rectum was spared and they were amazed since most of my colon was involved on the first colonoscopy. The less thats involved the better to me. I hope the inflammation goes away along with that discharge.

Where is the "just a drop" usually located in the pharmacy? And how much does it usually run price wise? I'll def stock up on that! If its one less thing to worry about im all about it!
Posted 12/28/2011 7:16 AM (GMT -8)
Hey,

I am new to the forum. I am currently being investigated for Crohns, been diagnosed with IBS for around 7 years, symptoms including right hand pain, bleeding, diarrhoea. Oh and really bad mouth ulcers.

Last new year ended up in hospital vomitting blood, lost about stone and half. Feel deydrated all the time, really weak and tired.

Struggling at work too just now, can feel fine one minute then suddenly feel horrendous and need to lie down. Sudden urges for toilet too, not always making it either, which is def embarrassing!! Loads of short term illness at work, they have been understanding but not sure for how long. Just adds to the worry.

Bloods are coming up with nothing, stool sample came back with nothing, not lactose intolerant. Eaten Gluten/Wheat/Oat free and have done for about 5 years, still getting symptoms.

Consultant advised just IBS without even looking at anything except bloods! Is this normal. I would've thought you need to look at bowel to rule out or diagnose IBD like Crohns or Ulcerative Colitis.

My GP finally persuaded consultant to do Colonoscopy on 4th January, which I am really anxious about, but hoping for some answers one way or another.

Fingers crossed I get through it ok smurf

 

Posted 12/28/2011 9:12 PM (GMT -8)
@Andi, I can relate to a lot of your symptoms and anxieties. One thing I wanted to say is that while reading your posts I could not help to think, what an awesome nurse you are going to be! Look at how much you have learned about yourself in dealing with Crohns. And when you get well (which I totally believe you will) you will have compassion for others that only life experience can offer. And I totally validate that life can really suck when living with crohns. Hang in there ;)
Posted 12/29/2011 1:43 PM (GMT -8)
@Pug- The colonoscopy isn't bad. It's actually a nice nap. I've had two in the past two months, and one a few years before that. The prep is the worst. I've had the golytely and miralax preps. Miralax is much easier to drink and easier on the tummy if your doctor gives it to you. I ask for it now. It doesn't give me the cramps and what I call rocket $hi& like the golytely does. After the colonoscopy passing the gas is kind of painful but I was also having a flare and my colon was very inflamed. Good luck and hope you get an answer! I know it gave me a sense of relief to finally have an answer... they were playing with Chron's and ulcerative colitis for almost the whole 4 weeks IK was in the hospital until they did the 2nd colonoscopy and decided that it was Chron's. (Although I half wish it was ulcerative colitis... you cut out that part of the intestine and it's pretty much cured unlike Chrons..)

@CustomK9- Thank you and I hope so! I've definitely gotten experience that not many nurses have and I do hope I am a good nurse like that when I get there... if it's one thing I've never been able to stand is a nurse who just pushes meds, doesn't care, and just in general is ignorant to the fact that the patient sitting/lying there is a person not just a "patient." I've been thinking about aiming for a GI/GU floor when I get a job if I can. I'll have lots of experience. I get kidney stones too so the whole bowel and kidney thing I'll be pretty good at understanding.
Dealing with Chron's is definitely no walk in the park. How long have you been diagnosed? It's amazing how quickly your life can change with a diagnosis and being sick. I'm still figuring it all out which fun either, esp the days when something does not work.
Posted 12/30/2011 5:08 PM (GMT -8)
Andi,

Welcome to HealingWell, but sorry you need to be here.
There is lots of great support, info, and advice.
And here is an early one concerning pain control. Most Gastros are not trained in pain relief or are reluctant about it. Get a Pain Clinic doctor or GP on your team ASAP. I lost a job in 95 because my Gastro wouldn't help me with pain control for my first BIG arthritis flare.
Its one of the more discussed things around here, you'll find.

Sincerely,
Matthew
dxed with UC in 92. DX'd Crohns 08/93. Living with the DD most of my life. Multiple complications from my "mild" IBD.
Posted 12/31/2011 4:28 AM (GMT -8)
Thank you for the advice! I will definitely keep that in mind. My doc seems to be really good about things and i'll find out this week. I have my fingers crossed he has exp with pain control.
Posted 12/31/2011 5:26 PM (GMT -8)
You can always hope. If he is a younger doc, you may be in luck. The Old School people seem to think all we need is control of the Big D. Hardly, this stuff always HURTS. Its nice to find doctors who understand that..
My Pain Specialist is usually focused on my back & joint problems, but always asks about my Crohn's.

Sincerely,
Matthew
Posted 12/31/2011 5:40 PM (GMT -8)
My doctor impressed me the first time i met him bc he came out to the waiting room to get me and then took my blood pressure which ive never seen a doc do! They let the nurses do it bc its not their job usually. Hes not young, more middle-aged. He seems very open to at least discussing things, compared to other drs ive had just shut me down like i know nothing...and im far from medically stupid. I should be an grad RN now but chrons had other plans these past few months. Either way im going to fight for the pain meds i need to control the pain from this disease..

Ive been noticing more of the tenesmus (sp?) and have bentyl to help with it. Is this something that is only there during a flare? I hate the bentyl bc it makes my stomach burn something awful for a few hrs after i take it.
Posted 12/31/2011 9:45 PM (GMT -8)
Hi Andi! I am always pretty weak from flares. My first major flare was back in 2006. I lost a lot of blood, and had to have an emergency unprepped colonoscopy to stop the bleeding. I remember not being able to walk from room to room in my house without being completely winded. It took about 6 months before I felt a lot stronger, and lots of iron pills to do so. I'd make sure and look in to seeing if you are anemic. However from all you've been through, it's really not a surprise that your feeling weak! My last flare I also started to bleed, but not as bad. I was just weak form all the mess I went through. I was also hospitalized last month for that flare. Same treatment, lots of steroids and antibiotics ect.. It's been two months from that hospitalization and I'm just now feeling much stronger.

You've been through a lot, give yourself some time to heal and get stronger. It will happen. Trust me I know the feeling of being robbed from things from this disease. It's a battle, and not always pleasant.
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