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I've lost my interest in Crohn's

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Posted 1/18/2015 2:58 AM (GMT 0)
Before I came to HW, I was heavily invested in a completely different forum for a few years. I ignored the downsides of Crohn's as best I could, while failing med after med.

At some point, I think my tolerance for this sh1tty disease just snapped and I came looking for answers. I would comb through past threads on HW for hours at a time. I got to grips with medical jargon and Pubmed, because popular medical websites weren't nearly detailed enough for me. This obsessive interest lasted about 3 years.

Now I couldn't give a crap about Crohn's any longer. Nothing I learnt made anything work. Nothing can bring back my colon.

Anyone relate or am I alone in this?
Posted 1/18/2015 4:13 AM (GMT 0)
Pretty much. Don't really think there is much of anything that really works great to be honest. Unfortunately as much interest as I've lost in it, I can only wish it would lose interest in me.
Posted 1/18/2015 4:24 AM (GMT 0)
I do, off and on. I feel like there's not much I can do to change it or anything more I can learn, so I come on here to help others.

Or to ask a question if something new happens.
Posted 1/18/2015 5:00 AM (GMT 0)
Hi NCIT, well the dang crohn's won't let me forget. I too have been through the meds and the herbs and the supplements and unfortunately, it is one stubborn disease. I'm at my wits end, as far as I'm concerned I ran out of options. According to my GI, Humira is the only thing left. I already had Remicade and the whole array of other drugs including prednisone which helped me more than once.. Regardless of the new report on biologics/I am still not convinced or comfortable with it, but I ran out of options. My GI was upset with me because I got sick on the azathioprine, I was on it for a month and had fevers and went down to 70 lbs. He blamed it on the crohn's, took me off but told me he won't treat me with prednisone anymore and said there is nothing else, so he let me walk out of his office without treatment, sick and at 70 lbs, not even a 3 day course of prednisone to help stop the attack I was going through. I thought that wasn't very nice of him. I am convinced that the medication caused me to drop the weight. The fevers stopped after I stopped the med. It's bad enough when one feels sick with crohn's and it's even worse when the doc gives you med and it makes you sicker, but they don't believe you.

Recently, a Colon Program found blood in my stool so sent me for a colonoscopy and the Colonoscopy doctor told me something about crohns's in the junction and told me to make sure I contact my GI, I was thinking about it, and figured I would wait until the biopsy report comes back before I make an appointment with my GI, then I figured, why bother, he won't treat me unless I take Humira? Then this past Friday, the Colon doctor sent me a notice in the mail that he wants to see me in Feb, think it's a follow up? Are follow ups normal after a colonoscopy? Now I feel I kind of worked myself into a corner and will probably have to make the appointment with my GI? So yes, I can certainly understand your frustration!

Post Edited (dorri) : 1/17/2015 10:11:33 PM (GMT-7)

Posted 1/18/2015 8:48 AM (GMT 0)
Yes NCOT,
At some point, we aren't really learning anything all the new or useful so it all becomes frustrating. The long thread on the science behind the diets is a good example....it just gets tiring after awhile and not all that useful. I do like the support aspects of HW, but its true that sometimes that isn't even happening much. I've been thinking about taking a break from the forum, but I get bored or worried about some of our regulars and end out back again.

I'm supposed to be in remission right now...all my tests were very good. My husband and I went out to this incredibly great new Italian restaurant that just opened. I figured that I might as well eat what I want and I enjoyed every bite of fabulous food. Now I'm up in the middle of the night paying the price. Having incredibly painful cramps....crazy pain! I guess it's my old friend IBS. But I do feel cheated....I thought remission would mean I'd be like a NORMAL person. I still have to not overeat, not eat gassy foods, not eat too much fiber, avoid lactose, etc. I don't even want to know what I did wrong anymore. Sorry for the rant! I'm just up in the middle of the night in pain and rambling... So yeah, reading about it doesn't help me feel better. But is does cut the loneliness out of the pain sometimes for whatever that's worth.
Posted 1/18/2015 1:47 PM (GMT 0)
I think gumby spoke pretty much for me as to why I come back here. I have taken a break from the forum for a few years, though.

But I actually have learned a lot from coming here. I live in an area where it's hard or impossible to find a GI who is interested enough in IBD to know pertinent details, especially of the extraintestinal manifestations. Those here, like yourself, who research these topics, have given me valuable information based on scientific knowledge that helps to steer me toward my own further research.

I would miss your input if you take a break, but you need to do what's best for you. -Joy
Posted 1/18/2015 4:12 PM (GMT 0)
NCOT-you have said it very well..I have taken breaks from the forum since 2005-I have done my research..and lost myself at time till I didn't care..My symptoms have returned even after being under control after years of predisone due to other drugs failing and most I could not tolerate to the point of just being angry and the doctors not helping and all the cost and expensive tests and retests seemed pointless..I think I have studied all diets out there and supplements..I just want to feel like a normal person and not deal with any of this anymore..I guess this was not the cards I have been dealt with in life..My symptoms are a daily reminder of a dd that does not quit..
Posted 1/18/2015 9:11 PM (GMT 0)
I think the only thing I learned on reading that that LONG diet thread, was that there was a bunch of people with more mild disease can get away with taking the most mildest drugs and tweaks in their diets. Then they think they can tell the rest of us with more severe disease what we are doing "wrong." As if this disease isn't frustrating enough, when people with more mild forms think they have the answers.
Posted 1/18/2015 11:14 PM (GMT 0)
<SUBTLE HINT>It's my birthday tomorrow, if any of you want to wish me a happy birthday.</SUBTLE HINT>

Anyway... hi folks :p

Dorri - I'd see a GI but I wouldn't go back to the same one. He sounds freaking useless and not even particularly nice. A fever on an immunesuppressant is cause for concern; even my GP knew that. Plus 70lb is a dangerously low weight; not to scare you, but that's the sort of weight you can die at. You should have been referred to a dietitian and probably put on TPN. As for the Humira, I suspect it's one of those hoops you'll probably have to go through. There aren't that many options for Crohn's and doctors tend to want try each and every med they can. That said, not all GIs are equal; I'd try to find one who isn't defeated by your case and blames you.

Gumby - It doesn't help, I know, but I sooooooo feel your pain :-/ My blood tests are sound and my MRI scan was clear. But I still have issues with my guts and still have to watch what I eat. Everyone on the Ostomy board raves about how healthier they felt after surgery, but I don't really feel all that great. Admittedly some of it is probably my own doing - too many late nights, not enough exercise - but I don't think there is any intervention which would make me feel on top of the world and give me loads of energy. It's disappointing, to put it mildly.

JaSanne - Somebody would actually miss my posts if I left? I didn't think such a person on the internet existed. Thanks! :p

cindy - Yeah, know what you mean about wanting to feel like a normal person. In my case, I have other things which make me not exactly "normal", too... :-/

Jen - Basically couldn't agree with you more.
Posted 1/18/2015 11:43 PM (GMT 0)
I use to be on this Forum a lot, it was one of my regulars. After my surgery I just wanted to forget the trauma for a while, so laid low. I would drop in occassionally and respond to some of the questions that I felt I was able to answer, but in my heart, I've always been grateful to HW and to the people on it. I listed my frustration above and perhaps over the last 3 years or so visting more often, but let me mention one more thing. NCOT, thank you, for little did you know that I was greatly helped by you, not only for the information you provided but even when you vented the reality of your emotions. Not only do we go through physical pain, but emotional pain as well. Often the worst and most discouraging of our vents are when we are going through hard times, sometimes prolonged pain or a road which seems without hope, and need the help and understanding and support of members to cope. You often answered my vent when no one else was around. Thank you, no one can tell you what to do, but I do appreciate you for what you've done for others, passing on information or just being honest about your emotions. It does get very discouraging for those who run out of options or have been through various medications and are worse instead of better with no end in sight it seems. (I am not only referring to myself but to others on this board as well)That's when some of us get down and take breaks from the boards, until something musters up our faith to come back again, thinking maybe this time there is the hope to be helped. Thank you all.
Posted 1/19/2015 3:10 AM (GMT 0)
Dorri - you're most welcome. Glad to have helped! :p

I'm tired and off to bed now. Night folks. (All birthday wishes gratefully received... >.>)
Posted 1/19/2015 3:27 AM (GMT 0)
NCOT, was today (1/18) your birthday? If so, we're birthday buddies :)
I'll raise a cup of tea for you, before turning in.
Posted 1/19/2015 4:30 AM (GMT 0)
Now, when you wake up in the morning, big open arms wishing you a happy, happy Birthday. I hope you have a great day not only on your birthday but the whole year through. Wishing you a year full of health, and hope and peace, so go girl! have a good one! HAPPY BIRTHDAY.
Posted 1/19/2015 1:36 PM (GMT 0)

starreyedgyrl said...
NCOT, was today (1/18) your birthday? If so, we're birthday buddies :)
I'll raise a cup of tea for you, before turning in.

Nah, unfortunately not. Today (1/19) is my birthday. But happy birthday for yesterday! :p
Hope you had a nice day!

dorri said...
Now, when you wake up in the morning, big open arms wishing you a happy, happy Birthday. I hope you have a great day not only on your birthday but the whole year through. Wishing you a year full of health, and hope and peace, so go girl! have a good one! HAPPY BIRTHDAY.

Cheers muchly, dorri. The same back to you when your birthday arrives! :p
Posted 1/19/2015 4:28 PM (GMT 0)
Happy birthday NiceCupOfTea!

Today would have been my dad's (81st) birthday too. He was like a kid when it came to birthdays. Always, always, he would tell each one of his kids their "labor day" story - every year. Unfortunately, my mother was in labor for 48 hours straight with me, bless her heart! What was even better was my mother's eye rolls every time he would start our birthday stories, and remind him that SHE was the one in labor!

I'm glad I now know someone else who shares this day. I do hope you've had a great day! -Joy
Posted 1/19/2015 5:46 PM (GMT 0)
Moral of the story: Crohns sucks lol

Do some research on Shakeology, it's helped me out
Posted 1/20/2015 3:00 AM (GMT 0)
Hope you had a wonderful birthday NiceCupOfTea!!
Posted 1/22/2015 9:56 PM (GMT 0)
Hiya, NCOT. I haven't been on here for about 3 years but I remember you from when I was last on and if I remember correctly you were trying to get DLA and having problems. Did you manage to get it awarded in the end. I got my awarded in January 2012 after developing Lupus from taking Humira, it was hard work filling in the paperwork but worth it.

I've recently spent 6 wks in hospital with a bad stricture from all my previous surgery and lost so much weight (I'm over 6'2 and weighed under 9 stone) they put in a central line and fed me up for 5 wks before I was fit enough for the 6 hours of replumbing and then removed the central line. Had to find new GI and surgeon as mine both retired and hadn't had a GI for nearly 4 years until now. Whilst in they have now discovered I have hyperparathyroid disease, so something else to be sorted but in UK NHS guidelines won't operate except in rare cases, unlike USA where they operate to remove whichever of the parathyriod glands isn't working. Only trouble is that the main symptom is loss of appetite so as now loosing weight even though I can eat anything now. So just been told that face going on TPN permanently. If it's not one thing......

So I totally get when you say getting fed up of reading and discussing it. Don't get me wrong when I last was on here it was so helpful and gave me somewhere to discuss it with people who understood. They when that flare up was sorted needed time away and to try and get on with life and forget about illness. So a belated thank you to everyone and it's nice to see some familiar names but a shame that some are still going through difficult times and hope you get some relief soon.
Posted 1/24/2015 4:43 AM (GMT 0)
Hi NiceCupOfTea,
First of all, I'd like to start out by saying I love your screen name. :) It for some reason is always nice to see it appear in the forum! And secondly, happy birthday! (belated :)

So I can relate to what you're saying; my interest in my Crohn's comes and goes and not even related to symptoms sometimes. If I am having a flare I tend to reach out more and answer more questions on the forum and it can sometimes help me feel connected, but other times I get very hopeless about it and kind of just sink into a depression (not good).

Right now my Crohn's symptoms are under control and have been for a while (knock on wood). At my worst I lost 45 lbs (currently I'm around 115-120 and am 5'3), couldn't eat and barely drink and was hospitalized for weeks while on morphine and IV steroids. That happened to some degree about 5 times. At my best I'm fine, I ran a marathon and have a stressful sales job.

However, most of the time I've noticed I'm just more tired by the end of the day, have less energy, not much motivation, take a lot of klonopin, try to keep up with my yoga practice and do all the wellness routines I know to stay above water - but it often seems if it's not one thing it's another. While my Crohn's symptoms are under control, I recently developed (about 5 months back) when the drs tell me is drug-induced psoriasis from the Humira I take. So crazy that a drug that can HELP psoriasis can also CAUSE it if you don't have it to begin with. I have quarter-sized red spots all over my legs, back, arms, now on my stomach, and it seems like it's spreading. Nothing so far has worked to make it go away. It's itchy and so unsightly (thank goodness it's Winter and I can cover up).

That was a bit of a ramble, but the point is that I understand what you are saying, sometimes I just stop caring about my Crohn's because there doesn't seem to be anything else I can do, but it will manifest itself in another form for me, which can be just as bad.

Sending you prayers and good thoughts and healing energy!
Posted 1/25/2015 8:18 PM (GMT 0)
Sorry stripey and wednesday - somehow this thread has eluded me for the past two days :-/

stripey - Hasn't it been PIP for a while now? Anyway, nah, you must be thinking of somebody else, because I have never applied for DLA/PIP. Congratulations on getting yours awarded, though.

But bad luck about the 6-week hospital stay, etc. :-/ Is there no way you can have the parathyroid surgery? Long-term TPN will probably cost the NHS more than the surgery would.

wednesday - Cheers :p

Know completely what you mean about the hopeless feeling. It's one reason why I don't post on HW as much as I used to. I'm not a natural optimist as it is, to put it mildly; so it's hard for me to reassure people when I'm not feeling very hopeful that anything will work for them.

I'm sorry about the psoriasis and hope that it goes away soon - are you still on the Humira?

Same back to you!
Posted 1/25/2015 10:23 PM (GMT 0)
Sorry NCOT, must have been thinking of someone else. Yes it is called PIP now it changed just after I had mine granted.

The question is what I'm going to ask when I see the endocrinologist in April (first date I could get) but you know what the NHS can be like. I'll point out that TPN will cost them a darn sight more than surgery and there is always the risk of complications from the TPN like organ failure, infections and the like. So will have to wait and see what happens. Otherwise I presume can appeal to the CCG and worst case scenerio see about having it done privately. Fingers crossed.

Wednesday77, totally get what you're saying about the Humira. It gave me Lupus and yet it is has been used on patients who have Lupus to control it. Weird how it causes illnesses that it is also used to treat.
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