Starting to deal with Crohn's

Hi Guys

I have just found this site. I just decided to write this, and I got carried away so I apologise up front for the length of this post. Its the first time I've shared any of this with anyone really, so it just kind of came out. Anyway, hopefully someone reads some of it..

I have Crohn's although I have lived in denial for 20 odd years. Today I decided I was going to be more mature about this, and embrace it. Why? I am currently in hospital and a 37 year old guy a few beds up from me has terminal cancer. For a few days I have been watching the effects of this on his family and even the nurses - the guy has horrible bleeding and other symptoms and is basically on his death bed. It is a sad situation for sure. For me this has been an awakening - my condition is bad, but its not going to kill me.. at least not yet. I have decided I need to grow up and deal with this - Everyone has their issues, and clearly mine is not nearly as bad as some others.

It's nearly 3am and I am sitting in hospital waiting for when I can take another Endone to control the pain. While waiting, I have read some stories that people have put on this site and it has made me feel a little better. I thought I would share my experience and see what effect this had on my own ability to deal with this. Hopefully some of you will comment...

I was diagnosed with Crohn's in 1990, when I was 16. At the time I was experiencing chronic abdominal pain which severely affected my high school exams. After an extended period of misdiagnosis, I ended up in hospital for 2 months having had a a re-section, followed by complications and leakage which led to a second much more urgent and messy operation and illeostomy. This was a very traumatic experience for me and my family. I was told that my chances of surviving the second operation were about 50-50, which was a tough thing for an adolescent kid to deal with. The pain and unpleasant symptoms were difficult to adjust to, and in the early days following the surgery I did not deal with this condition very well. In fact I was stupid enough to suggest to my poor mum that I would rather die than have to live with this for the rest of my life. After speaking to some psychologists and shrinks in hospital, I cooled off a bit. Perhaps the one thing that brought things back into perspective was when I was taken on a "tour" through the burns ward while I was in hospital. This made my realise that I was in fact not so badly off and I could deal with this..

After leaving hospital, and having the illeostomy closed, I gradually fell into a pattern of blocking out and denying that I was sick. I dealt with the symptoms without admitting to myself that they were related to an ongoing illness.

I went through a variety of treatments, including Prednisolone, Sulfasalazine and others. I had some adverse reactions to these initial drugs, and eventually my doctor settled on Mesalazine. I have been on Mesasal ever since, with varying doses over the years as prescribed by my gastoenterologist.

I should say that my mother insisted that I try natural remedies, which I perservered with for a while but after noticing no measurable success I gave up. They seemed to do nothing at all and the treatment appeared to be based on very little scientific basis - this made me quickly lose any faith in natural remedies.

I learned to avoid certain foods (lactose and fat immediately cause diarrhea and seem to contribute to pain and flare-ups). However I must admit I am not very good with my diet and tend to lapse into eating whatever and whenever, which makes the symptoms worse.

For the following years, I managed to control the disease reasonably well. Yes, I get constant diarrhea and frequent abdominal pain. I have had some embarassing situations related to the symptoms which have caused me a lot of angst.. perhaps mainly because of the fact that I am dealing with this condition in secret and noone else knows. I refuse to allow people to know there's anything wrong with me, particularly something with such embarrassing symptoms. This makes dealing with this illness more difficult - it has become my private hell. Not a particularly bad hell for the most part, but as many of you will know.. it has its days!

I continue to deal with the symptoms and block out the disease. However Mesasal tablets seem to control the flare ups, which are typically only once every few months. I have learned to block out pain, and unless it gets really bad I can quite successfully grind through it by distracting myself with work, entertainment or alcohol. The diarrhea and urgency of having to go to the toilet are also manageable. I have learned to spot toilets when I enter a new building and usually try and have a choice of toilets to go to to avoid people noticing that I go too often, such as the case at work. Its not pleasant, but manageable.

In the main, I live in denial as I hate to admit that I am "sick" - particularly with such an un-elegant disease. I have often wished that I had something else - like a heart condition, or something.. why does it have to be something with such embarrassing and unpleasant symptoms. Like others have said, I hate the idea of admitting that I have a "disease", and often refer to it as IBS or colitis when explaining. More often I hide it and avoid any discussions, including with my loved ones. Having learned to manage the symptoms for the most part, it is remarkably easy to pretend the disease is not there - I am so good at this that most people would never know.

I am now 36. I was married 18 months ago. I am ashamed to admit that I have not really spoken with my wife about this condition, although she is aware of my symptoms. She is very good about it and has not pestered me to go into details. Whenever symptoms persist and she raises it, I simply dismiss it as a minor annoyance and play it down.

In retrospect, over the last couple of years I noticed some increase in frequency of the flare ups. Finally, a month ago I was on a work trip and got such chronic abdominal pain that I ended up in an ambulance to hospital. I expected to get some pain relief and to be sent home. Over the years I have learned to live with chronic pain - eventually it passes, you just have to grin and bear it, right? I figured that I just needed something to take the edge of what I thought was a 'particularly severe flare up' and then I would be back at work. Alas, this was not to be. Soon after arriving in hospital, I was diagnosed with a bowel perforation and told that I needed immediate surgery. I should have known - this was no ordinary abdo pain.. it was the kind where your eyes water, head spins and you're doing all you can not to yell and shout like a baby.

Despite the doctors insistance on surgery, I resisted for about 24 hours, saying I was not going through that again.. The docs agreed to give it overnight to see if the perforation started to heal on its own. I spent the night in ICU waiting for blood results and hoping for the best. However by the next morning I was on adrenaline and clearly was not going to heal without urgent surgery.

When they opened me up, they found over a litre of crap (literally - poo, pus and god knows what else) in the abdo cavity, some scar tissue around where the previous re-section had been and a perforation. There was some evidence of active Crohn's in this part of the bowel. The surgeon removed the inflamed section, cleaned up me up and re-attached the intestine.

Long story short, the surgery was successful and I managed to get away without a stoma this time. Recovery has been slow - a week and a half ago a CT scan showed that the anastimosis had leaked, and I was put back on TPN and had a drain inserted. I have spent time in ICU, and experienced a lot of pain, discomfort, loss of dignity, etc - all the typical things that you get when you're hospitalised for a serious condition. Basically I've been through the wars again, and I have a nice big scar to show for it.. on the bright side, its slightly smaller and neater than the previous one that was done 20 years ago - seems medicine has progressed a little.

My wife has been at my side the whole time. I must admit that in some ways it has been harder on her than on me, since at least I was doped up on god-knows-what - from Morphine to Fentonyl to Hydromorphone to Ketamine to Oxycodone. So much so that the first week after the operation is something of a blur, and I can recall only sporadic events. However I have realised that my poor wife saw me go through this totally sober - I cannot even imagine how difficult it would have been for her to see me in such a state. I have a renewed appreciation for how difficult this must be on loved ones, and I cannot overstate how much I appreciate her being here with me through this. I literally would not have made it through without her...

I am now in hospital for the fifth week, however it appears that the leak has healed and I should be on my way home soon. The pain has all but subsided, and other than the discomfort of a PICC line, drain and a healing wound, I am relatively healthy. As a bonus, I have developed pulmonary embolisms (blood clots in my lungs) which will give me a souvernir to take away with me. God knows how - I wore my stupid bed socks nearly all the time, sat up in bed and walked around as much as I could.. when I could. Yet, I managed to get some clots anyway. These require regular medication (Clexane IM shots while in hospital, and then Warfarin tablets for a few months when I go home) and cause pain, however in context I guess they are the least of my worries. Ironically after having been through this recent ordeal and all the associated pain, I am now sitting here and would be totally pain free if it wasnt for the bloody PE's, which make it nearly impossible to sleep without pain relief. I can only hope that the symptoms of the PEs will go away with the effects of the blood thinning drugs.

This most recent experience has been something of an epiphany for me. It is now after 3am, and the nurse who just came in to give me my pain killer has told me that the poor boy has died. He has lost his battle. I can hear the parents and family crying. I have tears in my eyes, but the strongest feeling I have is that I need to grow up and deal with my own situation, which I can fight.. unlike this poor guy, who was not given the chance. This has given me even more resolve to start to deal with my illness, face it, embrace it and hopefully improve my qualify of life and avoid re-currence of another operation.

I am not going to put my wife through this again. The poor thing has gone through her own hell in the last few weeks - at more than one point she thought she would become a widow at 37. Noone should have to experience that. And I am going to make sure she does not ever again.

I intend to start by discussing this with my wife, and my other loved ones. To admit to them, and therefore myself, that regrettably I do have this disease - there's nothing I can do about it other than dealing with it as best I can. As I have learned, we all have our little problems - some bad, some not so bad. However, those that don't kill us should be able to be dealt with. And after all, my experience to date has been not too bad in the most part and if I can improve this even further then this can only make things easier on me, and my loved ones.

I am hoping that I will be encouraged to get more involved with others who are in the same boat as I am, such as you guys out there. Hopefully I can help some of you as well as getting some help of my own.

Thanks for reading. Comments welcome.

Cheers

Wow.....what a story and a journey.  Thank you for sharing with us here.  I admire your new attitude, and wish you the best as you move forward in life. 

Welcome aboard, Flipside! Thank you for sharing your story! It is one that I hope other young, newly diagnosed people will read - not to scare them as to the emergency medical possibilites - but for them to learn that ignoring ones disease can cause real problems down the line not only in ones body but in relationships also.

Yes, thank you for sharing your story. It sounds like a frightening wake up call... Your wife has been at your side, I am sure she will be there for you as you open up and move forward. I hope it helps to be "around" others who have been through similar situations.

Welcome to life with open eyes Flipside. Thank you for sharing your story. I think you will find that your wife will be very happy with you sharing with her. She almost certainly feels that you have been keeping her at arms length and I think you may be surprised at how eager she will be to help in any way she can, like keeping your diet better. I'm betting you will find that your desire to keep this disease secret was ill advised, after all, this is something that happened to you, not something you did. I have always been very open about this disease and was surprised to learn that some people were embarrassed by it, after all, it isn't embarrassing to get the flu, it happens to everyone.

I wish you the best in your future relationships and I hope to get to know you better.

Wow - what an amazing response. For all this time I've been dealing with this bloody thing privately, and for the most part dealing relatively well I might add. But its those times when you have an embarrassing poo situation that I'm sure most of us have had, or the night of nearly unbearable pain, that I secretly wished I had someone to share this with.

I am a 37 year old male. I hold a very successful job and I'm doing well for myself. I'm recently married and planning a family. Relatively speaking, things are good. If the worst thing in my life is the unpleasant and embarrassing symptoms, a bit of pain here and there, then I reckon I've been dealt a fairly good hand. Certainly after being here in hospital for a month I can see there are PLENTY of people in much worse situations, who are dealing with their conditions well and living their lives! If they can do it, so can I..

Nanners, thanks for your words. Now that I'm older and more mature (unlike the rebellious 16 year old that refused to take regular medication) I have realised that taking a few pills every day is hardly the end of the world. The reality is that most people take something, so its no big deal. So I have to carry Imodium around in case I need it - who cares. Yeah and I need to always have ibuprofen and codeine on hand in case of pain - again, its not like I'm shooting heroin!

Newfoundsus, Zanne and Ides - It's so bloody good to know I'm not the only one. We've all been touched by this unfortunate disease, and we're all surviving.. in fact, it seems we're living pretty rich and normal lives. No reason to hide it or deny it - I'm thinking I will start to embrace this thing and make the most of it.

Grayeyedblonde - Yep, sometimes you just need a good wake-up call. For me, having had to deal with this latest flare up has reminded me that I do have this condition, like it or not, and despite the fact that I have learned to deal with it it is still there and will be there for the rest of my life. And if I want to avoid going through this again, then I better do all I can to prevent it. And that means taking serious look at my diet, lifestyle and my attitude. I think I am prepared to do this. When it first happened, and then I was relatively ok for 20 years I just assumed that it was all behind me. Now I accept the fact is that it might very well happen again - and if I continue to ignore it with my casual attitude, it may happen in 5 years this time. And I am not prepared to put myself, or my wife through it again. No matter what.

sr5599 - Seeing her live through my pain was a real eye-opener. I can imagine that it was probably just as bad for her as it was for me.

mighty.mouse.xx - Crohn's seems to manifest itself differently in everyone. My symptoms aren't really that bad. Despite having lived through two hospitalisations, I live a normal life and it doesn't really affect me that much. You may never need surgery! Fingers crossed. If you do, again its not so bad. But from what I have read, there are many things that we can do to manage this disease and help avoid symptoms or the need for surgery. Diet, stress, meds - be diligent, and you'll be fine. As for the embarrassment, yeah thats a pain in the arse no doubt. I can live with the pain, but I struggle with the fact that I occasionally have an accident or need to urgently go to the toilet.. the smell, etc etc. Its not pleasant any means and it gets to me. But I have learned to deal with it. It happened pretty gradually, but you just tend to adjust. There are always toilets around, and with a bit of planning you can avoid any major embarrassing situations. And when something happens, the fact is that it seems a lot more of a big deal to you than anyone else. Maybe just try and laugh it off. Even people without CD have had similar embarrasing situations, so why should we have to hide it..

AzJohnny - You are absolutely right. It just seems such an all encompassing thing when you're living it, that you dont realise that its really no big deal. The harsh reality is that everyone has their little embarrasing secret, their regular meds, their recurring pain, their scars, whatever - we're not all perfect, so lets just accept it and move on.

Grandpato2 - Looking forward to hopefully helping out someone here as well as drawing my own help in this new stage of embracing this disease and dealing with it like an adult! I was embarrassed to share my symptoms with my wife - isnt that ludicrous. Now, in the past four weeks she has been at my side helping me go to the toilet, fix leaks in my drain and all sorts of stuff that I thought she'd find disgusting. To my amazement she embraced it - after all she's my wife.

Thanks guys for your kind words and support.

Hello Flipside,

My heart goes out to you and all you have been through. I guess you are having a bit of a life changing moment right now!

I am sure that your wife will be relieved that you and her will be able to discuss issues arising from your condition-am sure that she has a whole host of things that she maybe would of liked to discuss but knew that the subject was out of bounds! Each and every one of us is different and we all have our own coping strategies and when we are ready we will open up to others.

My son diagnosed Nov 09 (aged 16) and he doesn't say much about it right now, I am sure that thins are going through his mind but when I have talked about help/support sites,and I was given a booklet for him produced by teenagers who have Crohn's sharing their experiences he didn't want to read it or didn't want support because there wasn't a problem. All I can do is encourage and be there for when he is ready to open up.

I wish you well in this next phase of your life and I am sure that you will find that people are quite understanding and supportive and accepting,

Welcome aboard

Flipside, Just fyi Endone and Percoset are the samething. Also, taking Tylenol for me is like not taking anything at all. I have alot of Osteoarthritis that causes me alot of pain daily, and the 1/2 tab of Percoset keeps things under control enough for me to live my life. If I don't need it, I don't have to take it as I am not "dependent" on it. You will see many on this very forum who are like me and live with chronic pain daily and need narcotics to just get thru their day. We are not "addicts". There is a big difference between dependency on a med and addiction. I do not get high from my meds, but only get relief from my chronic pain. Addicts take prescription meds at higher doses for the purpose of getting high. As I stated before I only use 1/2 of the pill at a time and do not get high from it at all. Good luck!

Thanks Nanners for clearing that up. I must admit I don't live with constant chronic pain, so I really feel for you. I've had no symptoms other than abdo pain (ie, joints etc ok so far) - and even that only presents pain from time to time when I eat the wrong thing, too much or during flare-ups. Agreed that over-the-counter drugs do nothing - I take them as a placebo more than anything else, which is stupid I know. Due to my denial, I rarely have a regular supply of prescription pain killers.. so I just learned to grind through the pain with some codeine to take the edge off, which can be bloody difficult. I am going to see my GI when I get home and discuss with him a proper pain management program.

Vixen.. I have learned over the years that you have to be cautious with how you receive what doctors tell you. Doctors live in a strange world - firstly, there's a lot of ego there. Secondly, due to the complexity of medicine and the risk of malpractice at worst, or patient complaints at best, they tend to cover their arse by looking at the world in a very pessimistic way. Thirdly, early in their career they see some pretty horrific stuff and consequently they quickly develop a coping mechanism - this makes them appear very cold, matter-of-fact and seemingly uncompassionate.

Some of the most skilled and brilliant doctors I have met, and not just with my own illness, have been extremely unpleasant to speak with - I honestly wouldn't give the time of day to some of these guys if I met them on the street. Talk about glass half empty! You need to develop a way of re-interpreting what doctors tell you in a more human and empathetic way. This is particularly difficult when you are personally and emotionally involved, and even more so when you are young and recently diagnosed. And its a skill that comes with time. It might be best for you to speak with the doctors and then explain things to your son once you have absorbed, analysed and understood the concept.

Bottom line is that if you look around this forum for a start you will see that most people appear to be living rich and normal lives with this condition. Yes its a serious thing, but so is wearing a seatbelt, not drink driving, etc. Ie, if you manage these things, you are more than likely to be ok. Its when you start to ignore them that you are asking for trouble.

Btw, noone is "normal". When you dig deep enough, you'll find we all have our issues - some big, some little, but we all have them.. Your son and I just happen to have CD. Humans are good at hiding these "differences" - we all want to be alike, thats why we wear make-up, etc. The trick is to find a balance between hiding them from the general public, yet not from yourself and your loved ones...

I do hear what you are saying, the consultant actually appears to be a very nice/genuine man, always ready to answer questions, never feel rushed etc although there have been a few things that we are not entirely satisfied with-like I asked about the flu vaccine because he has now gone onto azathioprine and he said he didn't need it/couldn't have it (?!) My understanding that is that it isn't a live vaccicne so he should have it(will clarify that one with IBD nurse next week) Blood tests is another area where IBD nurse has said he(son) needs more than the consultant has indicated. Don't you just hate it when two professionals say different things!
I fully agree regarding 'normal'-sorry I did not mean to imply that anyone who had this or any other condition etc wasn't normal, I do not see it like that at all (hence the inverted commas) As you say we all want to be a like and accepted (my war paint goes on everyday ;) ) I guess what I was trying to say in my clumsy way is that my son would rather not have this issue and be like everyone else (am I digging a bigger hole here for myself!) I think that my son almost thinks that if he doesn't talk about it it will go away but that is not to say that he is in total denial, he has told his friends that he has Crohns and they just accept it.
Hope you continue to heal well and get out of there soon!

Flipside your story made me cry. I am so sorry you are going thru all this and it makes my issues seem silly and pathetic by comparision. I am new to this board having been diagnosed only 2 weeks ago. I suspect I have actually had the disease for 8 years but it was so mild it was diagnosed as IBS (I posted my full story on another post and won't go into details here). I am sorry you had to start going thru this so early in life and I can only assume back then that people were not as aware and knowledgeable of this disease. Today I do not feel the stigma of telling people what I have. I made sure my boss knew and she has a child dealing with gastritis so she understands I don't feel well all the time. I am lucky enough to be a work @ home associate which has been such a huge help. I will pray that you get out of there soon and hopefully go onto a long painless remission. I am so happy you have your wonderful wife to stand by you. She sounds like an extraordinary woman. I am lucky enough to have a good family support system and a wonderful boyfriend. He understands that I may not always feel up to going out or even having comany. This last 2 weeks has been an eye opener and you are right when you say it is hard to come to grips with the word disease. Get better soon and keep posting!

Thanks guys. It's a warming feeling to know that there are others out there who share this.

When I was first diagnosed, Crohn's was still quite rare and very poorly understood - in fact it took almost a year to finally pin down the diagnosis. Also my first surgery was a bit of a botch job by today's standards. It seems the surgeons were quite conservative and consequently took out a lot more small bowel than was probably necessary. And the anastimosis (ie, the join) was evidently quite poorly formed because the current surgeons are telling me that my latest perforation was likely caused by excessive scar tissue from previous surgery. Imagine that, paying the price for something 20 years ago!

In terms of the severity of my illness, I really don't consider it to be that bad. I suppose my posts may sound ominous, but consider that I have only written about the bad sides. In all honesty, in the 20 years between my surgeries I have only really suffered some occasional pain and more frequent than normal cramps, bloating and diarrhea. And as I said in a previous post, you kind of learn to live with it and after a while the symptoms don't impact on your life that much.. for the most part.

I am now looking at things optimistically and thinking that with the progress in medicine over the years, and the better understanding we have of Crohn's today, coupled with the fact that my latest surgery was much more advanced (docs say they cut out only a small piece of bowel and the join is large and clean), I should be able to avoid any major complications hopefully for many years to come.. or touch wood, for ever. Particularly if I am more diligent and careful with my diet, meds and dealing with this condition overall.

Things are good.

Great writing and thanks for sharing!

I do understand the wanting to not admit a problem and keeping it to yourself. I did that w/my thyroid, another embarassing condition b/c it is not so easily seen or understood, yet caused me 80+ symptoms and 80+pounds. How do you explain to people you eat salads and walk daily and gain 80lbs when you were an athlete the year before, some things are just plain embarassing. I am well over that, and willing to discuss way more. Even when I get anxiety now I'll let my husband know, it just feels better to get it out and let people know instead of constantly trying to supress it. In the prime of my thyroid condition, I just hid and wouldn't let people know and I let my mom know some things and was embarassed to admit anything. With this new Crohn's thing to me, I just tell people, sorry but I'm not willing to suffer alone again! ; ) I am all for group hugs, group therapy, support and you name it. It all started when I couldn't have wheat a few years ago, and then cow's milk and people wouldn't understand and I'd go to their house and have to eat something different. But now it makes more sense and I'm not embarassed to share. I am finding out there are THOUSANDS of thyroid suffers, crohn's sufferers and food allergy suffers and anxiety and all that. Talking is good. I wouldn't tell a stranger sitting next to me "Hey guess what, I have?!" lol or anything, but I do tell my friends/family. Afterall, I would EXPECT that of them.

My husband's parents (my in-laws) are like that and have a hard time revealing stuff. First it was breast cancer w/the mom and we all cried and hugged, I thought it was a special moment and I liked to be able to send her breast cancer fighter stuff and flowers. Then my in-law father who had a rough year last year, but admitted everything to us (it makes us love them even more and feel closer) that he had prostate cancer (and treatments like hormones that cause him to have hot flashes), diabetes and a heart attack on father's day. I'm glad they can talk to us, I love them! and p.s your wife will only love you more!

My husband married me through thick or thin, crohn's anxiety, thyroid or whatever my thing is in life. And I always know there are people out there with worse. My sister has Cerebral Palsy and does quite well in the world and I'd never want her to seclude herself or hide, she's BEAUTIFUL!!! She has a gorgeous soul.