Introuncing myself

Hello. This is the first time I've joined a forum for my crohn's disease. I suppose I'm just feeling overwhelmed by it all today and decided maybe reading other people stories might help. Mayne reading mine might help someone else. I was diagnosed with colitis when I was 19, a year after symptoms started. I was too scared to go to the doc, but I decided to see someone after my first child was born. I'm almost 30 now so I've been dealing with it for many years. My diagnosis changed from colitis to crohn's about 7 years ago. I'm currently experiencing a flare, the worst yet. I was recently hospitalized for 4 days because of my symptoms. That was the first time. I've been on 40MG of prednisone for two weeks now, and they aren't helping with the symptoms. My pcp is giving me norCo for the pain, which helps with the pain and the bleeding, for about 2 hours at a time. My gi decided today that he's going to have me start remicade again, but he also wants to refer me to the Henry ford clinic in michigan. I don't know how I feel about it, and I get a sense that I'm not getting the full story of my disease. I had a colonoscopy two weeks ago, during my hospital stay. Since being diagnosed, I've been in pain far more often than not. I'm so grateful that I was able to convincey doc to give me something for the pain. When I research crohn's disease, there is only a little mention of the pain that comes with it, like it's insignificant. it makes me wonder if other people experience the kind of pain I do from it. Especially when I mention to my docs how much pain I'm experiencing regularly, they tend to brush it off. I know the reasons the opiates help, because they metabolize in the intestines. The fact that specialists don't give pain meds for people experiencing flares has been confusing to me, especially lately. I was truly hoping, as I think the docs were too, that the steroids would be effective and quick, and stop the symptoms. But they haven't, and I'm still in a lot of pain. I was having the blood in my stool and the abdominal pain for about 4 months before I could see a doc, so at this point I'm desperate to just have it stop, even for a few hours at a time.

Remicade has helped me in the past, along with imuran. This time (a new doc) wants to start with just remicade. I'm hoping it's enough. I'm anxious about the referral to the Henry ford clinic. I don't know what that means for me. I don't know if it's because the disease has worsened, or what my gi's reasons are for it, he didn't really tell me, just that he thinks it would be best.

I have three kids. My first two I gave birth to naturally, with no pain Meds or epidural. My third was c section, so I had to have the epi. Pain is nothing new to me, and I generally handle it well, if that give you an idea of the pain Im dealing with right now. I'm haVing a hard time getting my friends and family (and even docs) to understand how this is affecting me lately. My fiance has been with me for 5 years now, and knew I had crohn's going into the relationship. He is having a hard time understanding why I don't always feel up to going out of the house, or why I get so tired sometimes, or even why I am taking the pain meds (he's very against them). I'm feeling very alone in this right now, like no one close to me really understands why I'm grumpy often, and why the pain affects me so much.

Does anyone else deal with kind of thing?

Hi!

I think feeling overwhelmed comes with the territory at times when you have Crohn's because it is exhausting to deal with an illness over years and years especially if you don't get much respite from the symptoms. Hopefully being able to talk to people on this forum who understand what you are going through will help a little with that feeling. It is really hard when the people around you don't understand.

Pain is a common symptom to experience with Crohn's but I think perhaps the reason that it's not talked about more is that you don't just want to treat the pain with pain meds, you want to treat the inflammation, which often helps with reducing pain. And of course there are other complications that cause pain - like strictures, where the best course of action might then be surgery - that's how it was for me and I'm not saying that you have strictures or need surgery at all, I'm just giving an example Anyway what I'm saying is you try to reduce disease activity and treat and resolve complications but treating the pain alone can mask important signs of those complications and/or sometimes disease activity. Plus there are the considerations with side effects from opiates and addiction. It is however really difficult to live with high levels of pain, especially longterm, so I do understand the need for pain meds (I've used them myself), I just wanted to explain why that isn't a priority for doctors and why it is appropriate to prioritize other treatments.

I can understand too why you might feel that your doctor isn't giving you the full story but I do think this is most often because they don't know what is going on - and that gives us that feeling - rather than them actually withholding information. I prefer a doctor who will say to me that they don't know what is going on and admit the limits of current understanding of this disease, but not all doctors will say that.

I don't think you should worry about the referral to another center. More expertise is almost always good when it comes to Crohn's and perhaps your doctor is aware that the doctors there will have more experience than he does.

How long until you start remicade? Some people don't respond to steroids but it sounds like it would be good to get some other treatment started soon so that you can get this flare under control.

Perhaps your fiance would like to read some of the threads here and there is a forum for partners too. It might give a better picture of the sorts of things people with IBD go through. It's definitely a difficult one when you aren't getting the support and understanding you need from the people in your life who should be there for you. I know there are others here who can relate on that issue. Please know that you have support here though and can come and vent whenever you want!

It's totally understandable that you are not feeling like your normal self - you're in pain and on steroids. I challenge anyone to not get grumpy at times when they are dealing with that!

Thank you so much for the response. Just reading that has helped my emotional well being, knowing that someone read my thread and took the time to wrote that means a lot.

I get the feeling that doctors are used to people with Crohn's being in pain, that it's just a given. I have some additional thing going on as well where I have had to explicitly lay out in very distinct terms (complete with imagery and metaphors) to truly get across to my doctors how much pain it causes me. And even after having treated me for months, or in one case years, they still seem surprised when I talk about just how much distress it causes me.

I've went so far as taking pictures of the toilet bowl and the paper I used to show my doc the amount of blood I have every hour. I was mortified to have to show anyone, but nothing else was getting across what I was experiencing. And why I have been in so much pain. No one Bleeds that much, that often without there being pain, from any part of the body

Summerflip, your story is so much like mine! I too gave birth to my first child all natural with no problems when my Crohns wasn't flaring. I was vegetarian, no coffee/caffeine for the first six months of pregnancy. Everything was perfect. With my second child I just couldn't give up caffeine, I started eating meat thinking it would be healthier, but things got worse and worse. The nausea of early pregnancy never stopped (even after giving birth) and I had pain worse than labor pain the whole pregnancy. Doctors and family didn't believe me. They said it was normal. I was in and out of the doctors and er and just kept being sent home saying I'm ok, (even though my white blood cell count was extremely high hand had been since). Finally they did an emergency c section because I called an ambulance. They had to remove my ovary and appendix and put a drain in for fluid leaking in my abdomen. The baby was perfectly fine, but I've been sick since. I've been in and out of the er since and finally a doctor mentioned crohns. That's when I found this forum and it's such a relief to know I'm not alone. Currently, my gi doctor has dropped off the face of the planet and I can't find another one. I just pray that my regular doctor will prescribe me nausea med and steroids to take ad needed (so far a small dose of Prednisone will make me feel 99% better). I don't want to try biologics for ethical reasons, I'm not sure they are ok for a vegetarian lifestyle (need to do more research). I hope my doctor will also prescribe me pain meds because I've been abusing over the counter meds to deal with the intense pain. Most of my pain comes from caffeine withdrawl. It's a constant battle, I need the caffeine to get through the day but it gives me instant abdominal pain, but when I give it up I get unbearable headaches. I know if I can ween myself off completely I will be better off, but it's so hard with work and kids. I have nausea and vomiting almost everyday. It's amazing how many women on here have similar stories as mine. I think being pregnant must be a big trigger for crohn's. That's when mine began flaring, but only with the second baby.

Biologic are all that really help me. They should start you off on Asacol or something like it. I didn't respond to it, but some do. I'm a caffeine drinker also, but it doesn't bother my system, not a trigger for me. Do you know to avoid nsaids? They make the symptoms of crohn's worse, along with aspirin. I get migraines. I have imitrex presribed, when I need it. One otc that helps my headaches is excedrin. Sometimes the small amount of aspirin in it will make my abdomin hurt though. Docs rarely give pain meds for crohns, because once the cause of the pain is taken care of, it's not needed. The issue I'm having is that the steroids aren't getting rid of the inflammation, so I had to beg for the pain meds unail it's under control. The only reason I got them is because I was hospitalized from the pain and other symptoms. Can your primary doc refer you to another gi specialist?

She did refer me, I spent three hours waiting on the phone today and finally just left a message but they did not call back! I got into one gi, but left crying because she yelled at me to quit smoking (I don't smoke) and told me diet has nothing to do with Crohns. I know diet doesn't cause it, but for me, it plays a big part in controlling it. She also told me that crohn's cannot affect other organs, but I believe it can and did affect my ovaries. So, I don't know what to do. I live in st.louis missouri, it's not a very enlightened place at all. I know nsaids are bad for crohn's but I don't know what else to use. Excederine has caffeine so I can't use that. Like I said I am extremely sensitive to caffeine, it's ridiculous. Luckily steroids are working for me, and I can ween myself off easily, but then it flares again. I am very picky about treatment and doctors because I don't trust a lot of them in my capitalist healthcare system.

Hi summerflip
I think you are doing amazingly well. This is the right place to say that it is not easy. It is so hard to live with the fatigue and pain day in, day out. I agree that chronic pain needs to be treated because it puts a huge stress on the body. I am so sorry for you that you are in so much pain. Be careful about self-medication with painkillers in terms of overdosing and long term side-effects (but I am sure you know this).

I really want to set up a "my partner does not understand" club. I get asked why I don't go out, as if it is my choice. Actually I like lying down on the kitchen floor. And I get told to ignore the illness. Maybe you can pretend you don't feel well for 2-3 days, but for months or years.....? I am pretending I don't have a husband.

My worst flare was also during pregnancy/after my second child was born. Coincidence?

That doc was out of line. If you don't smoke, not sure why she would badger you about it. Does tylenol help? Have they tried any other type of medicine, for the crohns, besides the prednisone? Its been my experience that the steroid helps during a flare, but I've had to have a regular regimen of medication to achieve and maintain remmission. It's very frustrating when you can't get a good dr. The doc I had before this one was aweful. The very first visit she was treating me like I didn't know my disease, or had any idea what I was talking about. She first did a colonoscopy and found nothing, and acted as though the previous 4 colonoscopies I had from other docs were inconsequential. From there she did the barium xray test, still found nothing. She wanted to do an endoscopy after that, but I lost my insurance and i was fed up with her anyways. She treated me like I was making upy symptoms. Crohn's is something that never goes away. I was glad when my pcp referred me to another group of gi specialists. The colonoscopy I had two weeks ago showed a lot of inflammation and old scar tissue from previous ulcers. My doc was curious why my previous gi specialist (the woman) hadn't seen anything. It had been 2 years before now, but she still would have seen the old scars, and would have seen that there was an issue. It's so very frustrating to have to go through all the tests over and over, like you have to prove that you're not making it up. I truly hope you find someone that will take you seriously and actually help, without making you upset.

King of Orange said:

Hi summerflip
I think you are doing amazingly well. This is the right place to say that it is not easy. It is so hard to live with the fatigue and pain day in, day out. I agree that chronic pain needs to be treated because it puts a huge stress on the body. I am so sorry for you that you are in so much pain. Be careful about self-medication with painkillers in terms of overdosing and long term side-effects (but I am sure you know this).

I really want to set up a "my partner does not understand" club. I get asked why I don't go out, as if it is my choice. Actually I like lying down on the kitchen floor. And I get told to ignore the illness. Maybe you can pretend you don't feel well for 2-3 days, but for months or years.....? I am pretending I don't have a husband.

My worst flare was also during pregnancy/after my second child was born. Coincidence?

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I know that pregnancy can play a role with crohn's. I've read that for many people it gets better during pregnancy. During all three of mine, I lost weight while I was pregnant. I attribute most of that from not being able to eat a lot if the pregnancy because of morning sickness and over all not having an apatite. with my last (3rd) i was 30 lbs less on the day I gave birth than I was when I conceived. During my second pregnancy I developed eurothym nodosum. It made it painful to walk and pot dark, bruise like spots all over my legS. It took me doing my own research and presenting it to my doc because no one had any idea what was going on. during my secondn pregnancy, is when I was first able to go into Remmision. My ob actually was the first to put me on steroids. It had been the first time in three years that I started to feel better. I was in remmission for about two years after that, and then had another flare, and that's when a new doc put me on remicade. That lasted for awhile, until I got pregnant and stopped the remicade I'm hoping it works again

Yes, exactly! Why would anyone make any of this up?! I got written up at work for calling in when I was in the hospital! And I work in a hospital, so you'd think they would understand! I took Tylenol when pregnant towards the end, and it did help a little, but I have to take way above the recommended dose honestly right now I've been taking aleve pm just to make me sleep through the pain. When the pain is at its worst, I can't sleep through it though. But like I said, the steroids do take away my inflammation and abdominal pain, just not my caffeine withdrawl headaches. I know I need a long term maintenance med, but I don't know what will be right for me. From what I've been reading biologics are derived from mice, so that really goes against my belief system, but I need to more research. My family is being more and more supportive, but still, they expect me to be a super mom and work expects me to be a super employee despite the disease and pain that forces it's way to the top of my priority list. You'd think since I work at a hospital I could find a good doctor, but not so much. Thanks for listening and sharing you stories! So glad some people understand!

Hope I don't sound judgemental about biologics, if that was all that worked I would consider it, it's just if I can avoid them, I prefer synthetic or plant based drugs over anything involving animals. And since small doses of steroids work, I don't see the need to jump to biologics just yet.

Luckily I am able to take time off from working right Now and am going to school. when I was working though, I worked in a few fast food places. It was so embarrassing to have to abandon a customer because I had to run to the bathroom. I always told my employers at the interview about my disease and let them know there would be a few times I would likely have to call in because of it, I always assured them that it happened rarely and that it was only when I absolutely needed to. And also to expect there may be times I had to use the restroom frequently. Or need time off for treatment. I found as long as I told them up front, most would work with me

That's great, so far no job has really worked with me, at least my current job offers eto and health insurance for the first time in my life. I also feel extremely at home in a hospital, lol, and I relate and am always understanding to the patients. I know at any time it could be me in the bed and not them.

I hope it's okay if I just reply here to empressentrails to ask if you've considered or have tried Enteral Nutrition to get off steroids? It can even be used as a maintenance treatment for some people if you do 50% formula and 50% normal food and pretty much doubles your chance of staying in remission.

Also I know that it is awful when you encounter a doctor who treats you like that and it should never happen - yet sadly too many of us come across these bizarre doctors who shout at their patients and blame them. Please try not to let it put you off finding a GI - even if it is hard work (which it is!) and you need to try more than one. I had some really bad experiences with doctors early on in my Crohn's journey and for a while it did make me not want to see any new GIs but unfortunately without good monitoring and treatments things can get a lot worse - as you already know! Are there any recommendation for GIs in your area on this forum? Knowing that a doctor is a good listener and takes time to discuss everything and takes into account your views is, I always think, a good place to start.

Thanks for the recommendations, I do need to search the forum for people in my area! I have thought a lot about enteral nutrition but have no idea if it would be covered by my insurance. I am currently studying to be a dietitian and work with a lot of dietitians, so at least I have resources around me. Right now I am on a diet I designed myself, it is completely soft and mostly vegan. I plan all my meals in advance so I don't get desperate and have to eat something dangerous. It's working really well so far. I'm just on 5 MG prednisone a day and hope to ween off completely soon. I still don't understand why steroids are so dangerous, but I believe they must be because everyone tells me that! I know there are side effects, but they don't seem that bad compared to other meds.

So far I've seen five gi doctors, the first two were after my surgery, they told me I wouldn't have any more problems (but I did), and since I've tried to see them again but they said they don't treat crohns and wouldn't take me. The gi I met in the hospital was great, he is the first one to mention crohns, but then randomly just closed his office and won't answer my calls?!? Then there was the scary doctor who made me cry. And then the one I got referred to who won't answer or call back either. I don't know what to do. I will keep trying even though I only get a chance when I get a day off during the week.

Keep talking to your primary doc. Let him/her know whats gon and see if you can be referred to some one else got gi specialty

Thanks, I hope so! I plan to go in with a whole binder of information just so she knows I'm serious. She also lectures me that I'm not trying hard enough to get better but at least she works with me and will see me. As far as pregnancy goes, my guess is that the pressure of the baby on the intestines causes them to be smaller, causing blackages, igniting the immune response.

If only we could will ourselves better, right?? That must be i6, I'm not trying hard enough to feel better lol. You have been diagnosed, right? It's crazy that this doc is giving you such a hard time. It's seems like there's protocol on which meds should be tried first. Interesting. There's no gi's in your hospital, or affiliated with it? Maybe of nothing elese, that cam point you to someone beter

I haven't been officially diagnosed because the gi I was seeing said he was positive I had Crohn's and didn't want to do a colonoscopy until I wasn't in a flare. I scheduled three different colonoscopies but ended up in the hospital before I got to each of them, and so he cancelled and said to wait until I got a little better. Now I can't get a hold of him, and cannot get a hold of anyone at the hospital I work at either. The weird thing is that my white blood cell count is extremely high. They've never explained that, but I assume if it was something like cancer they would have found it the many times I've been in the hospital. I am certain that it is crohns because I've dealt with abdominal pain since childhood but kept it under control with diet and elimination of caffeine. I have several close relatives with crohns and diabetes. And I assume if I had diabetes they would know. I'm trying to get diagnosed, but it's hard when no doctors will accept me as a patient!

What a rough situation. You need to get a diagnosis. i hope you are able to find someone to help. I would be going crazy. Are you still on steroids Now? I'm on 40MG prednisone right now, it's not doing anything to control it though. They did my colonoscopy during my recent hospital stay, as my gi is part of that hospital, and i had the procedure scheduled for the day after I was released anyways, so they just did it there a day early. It was a deal I made with the docs to be discharged. They told me they'd let me go home if I got it done while I was still admitted.

I am still on steroids, just 5 MG a day right now, but without it, it is instant pain/bloating/cramping/and abdominal masses, I was off steroids completely just a few weeks ago, but it flared again. Today I heard back from a doctor! I missed the call and they didn't call back again, but at least I heard something. I'm nervous because the colonoscopy will be at the hospital I work at now (if I can get it scheduled). I really don't want my work friends to know why I'm there, but oh well, they all know I have crohns anyway. I'm so sorry the 40 MG is not working, sounds like your flare is worse than mine right now hopefully the better weather will help. For me, I know it is linked to stress, when my kids or work stress me out, it's instant abdominal pain. I'm trying to get over 8 hours a sleep a day and that is helping so much. Plus I'm being really strict on diet and not being afraid to take time for myself to do yoga/run/play guitar, whatever helps me relax.

I'm really surprised your doc jumped to crohn's right away. Colitis is similar, and what I would expect them to consider before crohn's. You should let us know what happens after your scope

I will! Something less serious would be wonderful (if colitis is less serious, I don't know), my uncle had Crohn's and had to have a lot of surgery, so I know it runs in my family, and my grandma on my other side, too. But I don't think mine is nearly that bad yet, it's just so many times I have felt like I am dying, like I am in so much pain death has to be the next step. But with just a little medication I am perfectly fine. Odonsetran is my life saver, I keep it with me all the time. I will let you know what happens! A better diagnosis and remission would be wonderful.

Look up uc (ulcerative colitis) it's still an inflammatory bowel disease. It only affects part of the bowel, where crohn's can affect anywhere from the esophagus to the anus. They don't know that crohn's is genetic, but they (researchers) se to think there's a link for family history. My mom has diverticulitis. All we really know is that it's auto immune. Hopefully in a few years the medical field will know more about our disease. I'm terrified of the likelyhood of needing surgery and a colostomy bag.