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Posted 7/6/2015 8:22 PM (GMT 0)
I have been feeling blue for the last couple of days. So, I have been thinking of my life as a Crohnie. I was diagnosed w Crohn's 8 years ago. Before this diagnosis, I led a more than a normal life for 29.5 years. I was hyperactive, used to work a lot, travel, eat whatever I like and go wherever I want. Now, I have just to go to work and get back home to stay in bed or watch TV. In weekends, I avoid going out.
I really need to have some change and travel somewhere but I'm freaking out eating. My nephew and niece came to visit us and so my mum cooked for them all mouth-watering food you could think of. I'm craving food. More than 3 years ago, I decided to go on a very restricted diet (my GI doesn't approve it by the way) but it makes me feel better. I can't go on like this. I wish I could eat whatever I want like in the past but I know what to expect very well. In addition, I have started to lose appetite; I don't want to eat my normal "safe" food any more. I have both GERD and Crohn's and that's what makes it difficult for me to eat a lot of food.
As for the energy, I take a monthly B12 injection and a weekly B complex injection; however, I feel fatigued and out of energy all the time. As I mentioned before, I'd rather stay at home than go out. I haven't driven my car for almost two years now.
Though I am trying hard to cope w the disease and thanks to HW and to you fellows for raising my Crohn's awareness, I can't cope it w it psychologically. My family members can't figure it out and so do my friends. I feel I'm imprisoned in and by my Crohn's. No psychiatrist ever helped me. I need to have a drastic change in my life. I don't know how.
Posted 7/6/2015 9:43 PM (GMT 0)
I'm so sorry you're having such a difficult time, minnietoty. Lately I've been feeling down too. I've been on a very restricted diet the last 9 months or so due to a Crohn's flareup. My appetite has been poor and I've lost 40 pounds, but my weight has finally stabilized. I started researching on the internet different ways to make the foods that I could eat. I have slowly reintroduced a few foods back into my diet. Sometimes if there is something I'm craving that I know I shouldn't really have, I'll just take a bite of it. I know that doesn't really help when you have a craving for real food, but in my mind I guess I don't feel as deprived!

I've had Crohn's since I was about 7 years old, but not officially diagnosed until 21. I'm now 55. In years past when I was doing better I was able to walk 3 miles 5x weekly, but right now there are times when I can't leave the house for weeks at a time. I know it can be very isolating. In my experience, it seems like a lot of friends just don't have time for you when your disease isn't accommodating. I do have a very supportive husband and grown adult children. I don't know what I would do without them.

A few things I've tried just to give me a boost is to go sit outside where there is sunlight and listen to some of my favorite music. Sometimes I'll try and walk even if I can only go a few houses from mine. I'm going to try and start doing just a few exercises at home, starting off slow. Maybe just set some small goals for yourself...something for you to look forward to. We're all here for you.
Posted 7/7/2015 8:57 AM (GMT 0)
It sounds to me like you've reached a turning point of sorts. It does sound like it's time for a lifestyle change.

With this disease, It seems the first step is always treating the disease itself effectively. If you can accomplish this, then you can tackle everything that you don't like in your life.

I'm surprised you haven't resorted to biologics. Have you considered taking that step? For your energy, it seems you might be severely anemic. You should maybe get some bloodwork. An iron infusion may take care of that.

The fact that you haven't driven in two years tells me you need some sort of change as you mentioned. You really need to start taking small steps socially. Just as previously mentioned with food, maybe experiment a little, and try some other foods slowly and small amounts at at time and see what happens.

I with I had some concrete answers for you. I hope things get better soon.
Posted 7/7/2015 6:18 PM (GMT 0)
Minnie, have you ever considered surgery, or has your GI ever discussed it with you? It may not apply to your situation, but I remember being pretty much where you are before I resorted to surgery. I know several people have mentioned it, but you really should consider getting a second opinion from another GI. If you have a family/general doctor, you should talk to him/her about your case and see about a referral.
Posted 7/8/2015 2:39 AM (GMT 0)
@minnie, honestly, you can't lead a normal life until you are in remission. And you will only go into remission if you do something differently than what you are doing - biologics, new GI, SOMETHING. But you just ignore all of our suggestions for that. There really isn't anything more that you can be told.
Posted 7/8/2015 3:08 AM (GMT 0)
Everyone does keep telling you what you need to do. A new GI doctor and going on the biologic medications. Otherwise no, you won't be able to live anywhere close to a normal life. It's very depressing being so ill. I know. But the longer you put off getting real help for this, it's only going to get worse. No one can tell you anything new, please get yourself a new doctor.
Posted 7/8/2015 8:04 AM (GMT 0)
You are not alone. In the 17 yrs (15 since Dx) I've had this disease I've never found remission ... Not once ... Despite all my efforts. It just doesn't happen for some people and life has a new 'normal' and that is sometimes what you need to come to terms with. My highs are to be only flaring mildly... The lows are back in hospital for weeks. But through all this I have been determined to fight it. Oh God there are days/weeks when I just want to curl up and die. Where I feel I just can not go on. But then I think don't be so stupid there is good stuff... Even if I spend everyday in pain... Some days it hurts less.

In life sometimes you have to just take a leap of faith (not religious way) and change what you don't like. Don't use your disease to stop you. Grab the high points and run with them. I left my job and moved countries as I felt I needed to change my life ... Huge challenge... Ended up in hospital within the first month so didn't go to plan at all but hey I took a chance.

So guess what I'm saying is it's up to you. Get in that car and drive! And do it your way. Good luck x

Post Edited (Duffle) : 7/8/2015 2:08:37 AM (GMT-6)

Posted 7/8/2015 12:02 PM (GMT 0)
I've had moderate to severe Crohn's for 15 years now. One small bowel resection under my belt. I was also born with a heart defect, have a bio prosthetic aortic valve and also manage an aortic aneurysm. I do high intensity strength and cardio training 6 days a week. I eat whole foods, fruits, vegetable and meats. I am extremely healthy and very, very active.

My point to all of that is, you can take control of your life and manage your diseases instead of letting it manage you. You have to find specialists you can work with and the right treatment for you. There is absolutely no need to live in pain. There are treatment plans out there that work, you have to find the one RIGHT for YOU. And demand options and be willing to open your mind and try.

One of my BFFs also has Crohn's. Severe Crohn's, 3 major resections. He found Humira and is now an ultra marathon runner. It can happen :)
Posted 7/8/2015 3:49 PM (GMT 0)
Yes, it's like they say, if you don't have your health....and to me it feels very much like I have nothing...I flared for 23 years straight being either allergic or nonresponsive to meds until Humira last year putting my CD in remission, but I developed IBS about 14 years ago tha coexisted with my CD and my IBS is still causing me issues, so although I'm not sick like I was when flaring with CD I still have urgency (though much better) and frequency which has gotten better but point is I'm not just back to "normal" like many others get to be when they go into remission...even if I had to go 2-3 times a day with no urgency I'd be a little happier but I go anywhere from 5-11 times a day depending on what's going on with my monthly cycle.

I've lost all of my 20's, 30's and most of my 40's to my IBD and IBS and I can't help but feel cursed to live this crap life until the day I die...it's not a good feeling, I get very sad and depressed when I reflect back on my nothing life and when I try to imagine the future, it's all grim to me.
Posted 7/8/2015 7:03 PM (GMT 0)
Normal? No. I have to find friends in my 20s whose interests aren't solely trying new restaurants and drinking.

Can I still work? Yes but it needs to be a low activity job with bathroom access.

Can I still go out to the beach for a day? Sure I just need to be careful about what I've eaten before hand.

I'm currently running several at-home therapies which have kept my symptoms manageable combining diet and supplements. I have good energy levels and if I need to snag food on the go I can grab a pack of organic deli meat and cheese, roll it up and chow down.
Posted 7/11/2015 2:06 AM (GMT 0)
Dear all, thank you so much. I really appreciate all your replies.
I know that the majority of you have always advised me to take biologics and seek the opinion of another GI. It's not that easy. There are certain criteria for those who are prescribed biologics to be covered by insurance. As far as I understand, the disease has to be severe; mine is mild to moderate. In addition, my GI is considered to be the best in my city. I've seen a lot of others who are not convinced I've got Crohn's from the beginning. I even travelled to another city and saw several GIs who diagnosed my disease as IBS even after performing a scope and getting a positive biopsy. I know my rationale won't be convincing to a lot of other fellows but I have no other option. My disease shows only in the biopsy. I stayed for more than 3 years untreated. Then, I suffered from severe abdominal pain even tramadol couldn't control it, severe d, recurrent fever (39.5° C) and vomiting. I lost weight drastically then. It was only when I was put on pred, then MTX and after that Entocort that things became better. I know that all of you see me in an endless flare up but for me it's not the case . Yes, I do still have frequent d, nausea, low grade fever but pain is not a 10 all the time as it used to be back in 2007-2008. It could be now a 7 or an 8 and sometimes even a 4 or a 5. I'm trying to cope with pain.
As for having a social life, yesterday my friends and I hanged out. I thought that the best thing I could select out of the menu was ice-cream. An hour later, I had severe cramps, rushed to the toilet and nothing came out. We left after 2 hours, on our way home, it was very crowded and I had a severe urgency. When I reached home, I had explosive watery d and severe abdominal cramps that lasted for almost an hour. I used to enjoy eating ice cream. Now, it seems it has to be added to the list of forbidden food. I've always suspected I'm lactose intolerant and now I'm sure of this. Still, I will go out w friends again and opt for juice.
Posted 7/11/2015 2:40 AM (GMT 0)
Next time you want dairy use a lactaid pill first and see, if you don't explode all over the place then you'll know or you can even get tested for it, I did years ago, it came back as severe but I use lactaid and read labels because you'll be surprised where all lactose is hidden, it's even in Nytol and some Name brand antihistamines so you have to be avid about reading all labels before you ingest and use lactaid products accordingly.

I have IBS too, my CD is finally in remission after 23 years of suffering day in and out. Now that we have it in remission with Humira weekly shots I'm still working on my IBS, it's stress driven not food (seeing both a dietitian and therapist that both specialize in those with IBD/IBS/gut disorders/diseases makes a huge difference for getting the proper help. It's been determined by my dietitian that my IBS is not food driven but instead by stress and that's harder to work on than giving up certain food groups but at the same time I'm glad in some ways that I don't have to give up any food groups that commonly mess with people's IBS.

My IBD and IBS coexisted together...I developed IBS a little bit before 14 years with already having crohn's, life's been HELL to say the least, anxiety, depression, no self-worth, it's unbearable but it is what it is, what choice do you have other than to seek all forms of help as I am.
Posted 7/12/2015 12:39 AM (GMT 0)
Does your GI still consider your condition mild to moderate? I would imagine at this point, with your quality of life, it would be considered severe.
Posted 7/12/2015 2:18 AM (GMT 0)
You really don't sound like someone with mild to moderate disease. When I had mild disease I took Asacol and would occasionally have a taper of prednisone. Those years I was able to live a lot more of a normal life then I do now that it's severe. You need a doctor that's going to listen to you and go to bat for you with the insurance company.
Posted 7/12/2015 9:04 AM (GMT 0)
Dear all, thank you very much.
@pb4. I'm very glad that you could work it out w both your dietitian and therapist. I know how IBS symptoms could be very devastating let alone Crohn's itself.
@ Scifigal, @Jen77. As far as I know, a severe condition is when there is bleeding, stricture and fistula. Correct me if I'm mistaken. I don't have any of these symptoms yet. All I know about my condition is that I'm steroid -dependent and nothing else can control my symptoms though I'm not in remission yet. I reached a point now where even "safe food" causes me a flare up. I don't know whether this is an allergy or what but now whatever I eat brings about explosive watery d and abdominal cramps. Callled my GI but he's traveling. I'll see his assistant and discuss things w her. Last time, he ordered tests to see whether to taper Entocort or not and negotiate any other possible modifications. I won't be able to see him before 2 weeks or more; his assistant won't be able to take such a decision though she thinks I'm eligible for biologics.
Posted 7/12/2015 11:43 AM (GMT 0)
In my not so humble opinion, if you're waiting on a psychiatrist to help you with anything don't hold your breath. I've been in a flare for eight straight months which started when I was in a wreck with my little brother and watched him die right in front of me. The reason I say that isn't to get sympathy, it's so you know that I understand how tough this sh@t can get. My faith in God (I'm a Christian) is what keeps me going. Of course I've been angry at the world and God sometimes but at the end of the day this is the hand we are dealt. It sucks but some really have it much worse. I went to a psych for three months after the wreck. Actually I went to three different ones. I found them of very little help in my situation. I prefer prayer or counsel from a wide pastor or fellow believer. For me my day starts around 2 or 3AM with painful bloody bowel movements. Prednisone doesn't allow me to sleep and when I do I have horrific nightmares. But I tell myself "Garrett, get a little ice water in your veins and get through it". I cry a lot. I'm not really that tough but I can lean on God and I just try to remember that it's not about me. None of it. This world, none of it. I just want to try and honor God. Feel free to message me any time if you need someone to talk to or get you motivated. You're a strong person, we all are. To be able to stick to a diet two years is so hard. I admire you a lot.
Posted 7/12/2015 11:52 AM (GMT 0)
Keep switching doctors till you find one that'll put you on biologics. If your current treatment isn't working, which it obviously isn't, you'll be able to find one who will get you on remi or Humira. You have to want to get better. If you give up there's nothing anyone can do for you and your life will most likely suck. The day I give up will be the day I die.
Posted 7/12/2015 7:12 PM (GMT 0)
Musicianfisherman, I'm seeing a therapist for my IBS because I need to learn how to deal with stress better, if people would stop fooling themselves into thinking a therapist or any other "head-doctor" can fix them then maybe they'd actually get the help from them that they desperately need, you don't see a therapist thinking they can fix you, you see one so they can teach YOU how to FIX YOURSELF with the way you think because if you're depressed then you need them to teach you how to change the way you're thinking, change the way you cope with things or more like lack of the way you cope with things.

There isn't a quick fix, it takes as much time as you're willing to put into yourself, a therapist is a guide to help you help yourself. Too bad people can't figure that out and instead they snuff the whole idea of mental help when they really need it but aren't willing to understand exactly how it works.
Posted 7/12/2015 9:50 PM (GMT 0)
Pb4,

Musicianfisherman is going through the mourning process and what sounds like PTSD, so it's far more complicated than just changing a "lack" of coping skills. I mean, who "copes well" with having a loved one die right before his eyes? I haven't walked a mile in his shoes, but I've walked too many miles in my own tough tracks to be condescending to someone in his position. IMO, he was just trying to be helpful and mentioned his own experience, which is just as valid as yours or anyone else's. I didn't see where he was telling Minnie to stay away from a mental health professional, but just what his experience was.
Posted 7/12/2015 10:09 PM (GMT 0)
Minnie,

I'm sorry for hijacking your post above. If I remember correctly, you've been on Rifaximin multiple times? I wonder if you've developed colitis from the antibiotic and if that could be why you're worse, but I'm not familiar with that particular one to know its record concerning antibiotic-related colitis. I had that happen after I was on an antibiotic (Biaxin, I think) for an upper respiratory infection once and I was hospitalized from it. I know I'm just guessing.... I wouldn't describe your illness as mild to moderate at this point either. Not everyone develops fistulas; you may actually have a stricture from your description; and bleeding can be occult anyway. I understand your position - that a GI is going to have to sign on in order for you to be put on biologics. I don't know just how hard it is to find another GI under your healthcare system either, but I'm thinking it's pretty difficult? You absolutely have lost quality of life, though and I hope you can get your doctor to listen to what's really going on with you. Take care. -Joy
Posted 7/12/2015 10:45 PM (GMT 0)
I'm considered severe due to the bad inflammation I have in my colon and TI. As well as not being able to control my symptoms or inflammation with the more mild medications and without constantly being on steroids.

When I had my major bleed out they were still considering me mild because my disease was still in a small area in the TI. My fistula was fixed well before I was even diagnosed, haven't had one since! Knock on wood! I don't have any strictures yet either that they've found. So no, those are for sure not the only factors in deciding if your severe or not. You just need a doctor to get on board with helping you.
Posted 7/13/2015 12:26 AM (GMT 0)
Have you talked to your insurance about what it would take to get biologics covered? It seems like since you've tried everything else and it hasn't helped that should be justification enough. There's plenty of research that biologic use with mild/moderate cases help control the disease better than other drugs.

I'm sorry you are having a tough time, and there aren't a lot of options with doctors.
Posted 7/13/2015 1:15 AM (GMT 0)
JaSanne, I was not being condescending towards Musicianfisherman, I was pointing out that way too many people snuff the idea of talking to a professional when they're going through extremely difficult times in their lives...but since you brought it up and made my post sound like I was being insensitive which was not my intent at all, rather it was to reiterate to people that need to seek professional help but now possibly won't bother based on one person's 3 month experience of trying to seek help for themselves and found no success (at 3 months who would under those circumstances??) I know many here have talked about only seeking therapy short-term and suggesting to other's that it was a waste of time, well yes, if you're only going for a short time then you're not committing to it and therefore shouldn't expect to get anything out of it...therapy doesn't offer a quick-fix solution to those that need it regardless what the circumstances are for why you'd be seeking therapy.

Therapy is also a lot of work on your part, the therapist or what have you is only a tool for you to use, it's up to each individual to follow the advice given by therapists, that's all they can provide but it's up to us to follow through with the exercises they give us to do in order to help ourselves deal/cope with our stresses which everyone has to some degree and believe me I am well aware of that fact.

More than enough people that should be seeking therapy don't because of the stigma attached and the negative responses by others in regards to therapy they've encountered themselves...which like it or not, is the worst advice you can give anyone, why not instead say "hey it didn't work for me but you won't know until you try it" rather than "don't hold your breath if you waiting on a psychiatrist to help you with anything" and that was my point and therefore triggered my response.
Posted 7/13/2015 4:21 AM (GMT 0)
The problem in my opinion is the idea that somehow anyone that goes through a traumatic event, including this disease, automatically has a "problem" and needs help. I can only share my experiences and what's seemed to help me. I seem to be in a lot less mental anguish than some folks I see on here and I'm sharing what's gotten me through my experiences. There's a definite need for counseling in many cases, I get that. Seems like for me the counseling gave me more problems than it helped with. Basically convincing me I was supposed to be having all these symptoms I didn't really have. I just honestly believe that you can get inside of your head too much and in some cases I feel like therapy only made me worse. And of course it doesn't help that they want to dole out psychotropic drugs like snickers on Halloween. Sometimes depression is a sign that something in your life is wrong. I.e. "I hate my life, my boss is a jerk, and I can't stand living in my neighborhood" maybe you need to quit your job, and move! Nothing is always this simple. I understand. Some people handle things differently than I.
Nothing is more important than mental health. Just like with Crohn's I will do whatever it takes to get healthy. Mentally I feel like people far too often get discouraged and simply accept their sorrow as a condition they can't help. My ex girlfriend is a perfect example. According to her she suffered from depression and that's all she thought about was her depression once she was "diagnosed". Then it became something she said she had no way of helping at all. She was going to have a bad day no matter what happened because that's just the way it was. She treated her depression diagnosis as if it were a terminal cancer she would eventually succumb to no matter what. The girl was perfectly normal till she started going to counseling. Then she all of the sudden had deep childhood issues that were total Bologna but her psych would validate these insane tangents and make her believe she was neglected and abused when anyone could see she has a normal childhood. Nobody has a perfect childhood/life/parents/environment. At some point you've got to get up and say "I'm going to make today a better day than yesterday". If you've lost that spark it truly is impossible for anyone to help. That has to come from down inside you.

This is just my opinion and it's tough to hear. Nobody has to agree with it. All I can say is this mindset has allowed me to get through some incredibly horrific things than 95% of folks couldn't fathom in their worst nightmare. By the grace of God I'm able to live life and smile still. This is meant to motivate someone who might be feeling like they're in a rut. I just think we have to fight our hardest to eliminate everything we possibly can that causes us to be unhappy in our mind. I promise I'm not trying to be insensitive but at a certain point sensitivity becomes a hindrance if you want to actually get over something. Much love and I promise you're all in my prayers. Just my two cents. I'm strongly opinionated but I have been wrong about lots of things so I caution anyone taking advice from me or anyone else to do so with discretion and try your best to stay off the psych meds. There is definitely a place for them but they can be dangerous
Posted 7/13/2015 5:13 PM (GMT 0)
Very well said BRelaxed!!

First thing I told my therapist was that I wasn't interested in taking medications, she had no problem with that, she's in my GI's clinic, she specializes with IBD/IBS and other gut disordered patients and I really really need her guidance...

So far she's taught me how to do guided meditation and guided body relaxation, she's trying to teach me how to manage my anger and sadness and being overwhelmed by life, not just my disease and my IBS, if I hadn't gone to her I'm sure I'd have killed myself by now so I get very infuriated when on a support board of all places people knock getting help with any kind of mental help especially after such a short time of trying it themselves. Clearly if you don't put effort into something it's not going to work, sometimes you put all your effort into life and it still sucks and that's exactly how I felt and still feel only I'm feeling slightly better about things, I'm learning a lot about myself and about how others are too. I still don't know how things are going to turn out, I've been going through a lot of family crap and even with my therapy every 2 weeks I'm finding many things overwhelming, not the therapists fault but the fault of life. I"m still trying to decide what path in this hell I'm going to take, I have much work ahead of me since I've never had that great of a life in many ways, not just physically wit illness but emotionally with an abusive mother (physically and mentally) and a mentally abusive husband not to mention issues with my kids. I had no other choice than to turn to therapy when I did, it was either that or suicide....I don't know what my future holds, maybe therapy will only put off my thoughts because I've been in a bad place for a very long time and frankly I'm sick of how the world works, I'm disgusted with how awful people that you love and are suppose to love you back can treat you worse than most strangers, I'm sick of a lot of things and I'm just trying to figure out how to cope until my lucky and best day ever finally arrives...my last day will no doubt be my best day in this god forsaken crap we call life.

Thank you BRelaxed for your reply.
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