Introducing Myself

mikeymac · Mar 9, 2015

Hi all
I was diagnosed with crohn's back in 2001. After multiple colonoscopies(6 in one year) They finally diagnosed me with crohn's colitous of the sigmoid colon. They put me on Asacol for a while which caused my pancreas to go haywire and almost killed me. I"ve been scared after that to take the meds for Crohn's I was on colazol for a while but it seemed that did nothing. My case isn't as bad as some others that I've read about. I have developed a bad case of Gerd because of this(I think) but everytime I take meds for it my stomach give me bad pressure and pain making me think my heart is going and every time I get off of them it gets better. Recently my doctor sent me to the ER because my WBC was at 16, when they did scans on me that count was back down to 10 but they found a narrowing of my small intestine. I have a procedure this thursday to check it out. I hope the doc can do something about it. My GI also said I have a mild case of barrettes syndrome. What I was taking the acid blockers for. But those acid blockers were murder to my system. Anyways. This disease give me bad anxiety at times and off and on bleeding. The only control that help is chlorella, but it seems like my body is fighting that now. I feel like I'm falling apart and can't fight this sometimes. Kinda like its winning. Thank goodness for the kolonopin or I don't know what I would do. Anyway, I guess this was a vent instead of General. But thanks for listening. I"m getting so tired of dealing with this but to see people that have dealt with it longer then me gives me some hope.

Anyway thanks for the ear. I'll be checking back later.

24601 · Mar 9, 2015

Hi mikeymac,
I don't have experience with your specific issues but I do know what it is like to battle this disease for a long time and at times feel like it's winning. I'm glad you found the forum! I think it helps to be able to hear from others who go through similar experiences and to vent!
I hope your procedure is successful and that you are soon getting the better of Crohn's! Good luck!

mikeymac · Mar 10, 2015

Thanks for your response.
Sometimes I feel like taking my whole bottles of kolononpin and ambien. I've been on my walks and watched big trucks go by and have had thoughts like "Just a few step to the right and the pain will end" But those are fleeting thoughts as. I'm trying to fight this so I can be there for my nieces and nephews. I"m trying to help change the system of things so our children will have a future. That kind of thing keeps me going I guess.

Ever since I agreed with my Doc to take acid blockers it seems my crohn's has flared up. Has this ever happened to anybody else? It could be pure coincidence but I feel like I did when was first diagnosed. I may have to start taking the sulfazalizne. But I won't be able to go out into the sun. I can't seem to find any support groups where I live. I can't seem to exercise like I want to latey without feeling like I'm going to die. I know its from this disease and not my heart. Anyways, thanks for responding.

24601 · Mar 10, 2015

I think there are quite a few of us here who can understand those feelings - just wanting all the pain and sickness to stop. I know that doesn't exactly help but do know that you are not alone in that.

Keep fighting, keep holding on to those positive things in your life and the value that you have for the people who just want you around - even if you are sick. Sometimes it feels like such a struggle for us to keep going but hopefully you will start to feel better. Maybe a new treatment will help.

UnXmas · Mar 11, 2015

Although my physical issues are different, I understand the feeling of fighting a losing battle with your health.

One thing I found helped was a change in my mindset. Instead of trying and trying to get healthy and live a normal life, I accepted being ill. I have a progressive genetic condition, so my health is continuously deteriorating. A few years ago, I gave up all attempts of being normal, accepted my parents were going to be my carers, that I was never going to be able to have children or be able to work, and it was such a relief. I wasn't constantly trying and failing anymore. I'm still always looking for treatments that may help any of my physical symptoms, but no longer with the sense of desperation that I had had previously, when I felt I had to get healthier in order to have a life.

I don't know if this mindset would work just with the Crohn's. Crohn's is treatable and can go into remission, and it isn't progressive like my other health problems. But maybe if there's ever another time you're thinking about an overdose, you could try telling yourself, "or I could live with the pain". I know that sounds counterintuitive, but when you're constantly wanting pain to stop and all medical treatments have failed to make the pain go away, then those desperate ideas of ending it can seem the only option. If you can manage to stop wishing for the pain to end then you won't turn death as the only available escape from it - you won't need to escape. And instead you may be able to focus on the things you can do and enjoy despite the pain. If nothing seems enjoyable, you can focus on things you could do for other people, and maybe find you can help others despite being ill and in pain. I've a feeling I'm not explaining this very well. But it was antidepressants that brought about this change in my way of thinking.

I enjoy some things similar to those you enjoy; I enjoy being an aunty to my nephew, and being a mum - a mum to my dog anyway. I can love my nephew and my dog even while I'm ill.

DJBHeat · Mar 11, 2015

Crohns is quite the battle! I went through many years of fighting with flare ups, hospital visits, only eating liquids etc. I was finally put on Remicade and it's been a life saver. A year and a half so far of little to no problems, so yes keep your head up and take it easy! There is light at the end of the tunnel

mikeymac · Mar 11, 2015

UnXmas Although my physical issues are different, I understand the feeling of fighting a losing battle with your health.

One thing I found helped was a change in my mindset. Instead of trying and trying to get healthy and live a normal life, I accepted being ill. I have a progressive genetic condition, so my health is continuously deteriorating. A few years ago, I gave up all attempts of being normal, accepted my parents were going to be my carers, that I was never going to be able to have children or be able to work, and it was such a relief. I wasn't constantly trying and failing anymore. I'm still always looking for treatments that may help any of my physical symptoms, but no longer with the sense of desperation that I had had previously, when I felt I had to get healthier in order to have a life.

How in the world do I accomplish that? Seems like I try to do that but to no avail. I do feel alot better when I take my kolonopin but even that seems to be wearing thin. It helps, but not enough to get to sleep. Thats where ambien comes in. I feel no pain when I'm able to sleep.

I seem to be having more problems with my upper stuff rather then the crohn's. If I could only relax more. Seems like my GERD has got bad enough for me to feel my throat closing in, but that could be just anxiety because it does seem to be relieved from drugs. I take kolonopin, flexeril, ambien. I've been taking kolonopin and ambien way too long but they help.When I was in the ER two weeks ago they found a narrowing in the small intestine where the duodenum meets the Ileum. I have an upper endoscopy tomorrow on 3/12/2015. I'm hoping that's been my problem and I can feel better so I can be more help to others.
I plan on seeing a meditation/Yoga therapist after that procedure depending on the results. I may have to have major surgery if they can't fix it through this procedure. UnXmas, you seem very strong if only I could have that kind of strength right now. I appreciate you taking the time to help me understand more.

Crohns is quite the battle! I went through many years of fighting with flare ups, hospital visits, only eating liquids etc. I was finally put on Remicade and it's been a life saver. A year and a half so far of little to no problems, so yes keep your head up and take it easy! There is light at the end of the tunnel

Yes, I may have to take my sulfizalzine. I thought I could help my condition with out those kinds of meds. But the stuff I've been taking "Chorella" has been failing me.

Question: I noticed there is a chat. But everytime I go in there is no one there, when is a good time to get in there?

UnXmas · Mar 12, 2015

I wish I could tell you what to do to find more acceptance of your situation, but of course it's not that easy and I'm really not sure quite how I somehow managed it. I do still have times where I just wish I could be "normal", and I even get bitter about it sometimes, just never anywhere near the extent that I used to. I started taking amitriptyline, and that made the overwhelming feelings of depression more manageable, which enabled be to see things more in perspective, and act accordingly. My physical health reached a point where it was much easier for me to realise that I truly am very sick, which in a way was helpful, as it meant I stopped wondering if I could ever live normally; it made the decision clear so I was no longer going back and forth about it. And I'd really tried everything I could think of to try to get better and to try and live normally.

Question: I noticed there is a chat. But everytime I go in there is no one there, when is a good time to get in there?

I've never used it, buy maybe if you post your question in this forum: http://www.crohnsforum.com/forumdisplay.php?f=6
someone may be able to tell you about the chat. Or you could start a thread in the members only forum ( http://www.crohnsforum.com/forumdisplay.php?f=27 )asking if anyone's interested.

I hope your endoscopy goes well.

mikeymac · Mar 12, 2015

My upper endoscopy when very well. They found 5 polyps in my stomach and removed all of them but the largest one. They all were gastric. I have less constant chest pain now and that really helps. However I still feel sick and I still have loss of appetite. I still have to force food down. But it is only the first day after the procedure. My crohn's has been acting up I must have went to the bathroom 10times today, all blood and mucus. It takes the doc so long between appointments. At least my chest has less pressure. BTW here was the results
-Z-line irregular,. Biopsied
- A few small sessile gastric polyps. Biopsied
- No Gross lesions in duodenum
A small hiatus hernia was present

I'm assuming the polyps were causing my chest pain. Cause I do feel better in that area that was killing me for a couple weeks. I feel like I can relax more.

UnXmas, I really appreciate your words they helped alot. And I pray that you and I can be "Normal" I would so love that.

24601 · Mar 14, 2015

UnXmas,
Would you mind putting the advice about accepting that you will experience pain into the context of the pain meds that you take? I imagine that you mean that despite taking pain meds you still experience a certain level of pain and don't expect your pain meds to take all the pain away, but I think it might be useful for you to clarify that. Thanks

I'd also like to make the point that pain can be an important sign that something is wrong - even if it's not an emergent situation it can be a sign that the disease is not under control and better treatment would help this. Crohn's may not be a disease with amazingly successful treatments but there are treatments - a whole range of them - and I think the idea that we give up and accept pain is a potentially dangerous one that can lead to more complications and a poorer longterm prognosis and quality of life.

(Btw I don't think that was the intention of your comments UnXmas but I also felt the need to put this opposing view here to balance your approach. Because I do think it's a question of when to learn to live with the degree of pain we have.)

If we're diagnosed and under the care of a good doctor and the pain has been fully investigated, and they have either found the cause of the pain or exhausted all attempts to find the cause, if we are getting the best treatment possible and our doctors have applied treat-to-target criteria and moved on to try new treatments if those criteria aren't met, and we have exhausted all options then at that point you might say this is it and this is how I will always be, but that's a very long road that most people with Crohn's haven't got to the end of, even when it feels so exhausting that we think we surely must. And I know even that sentence is exhausting.

That's not to say that learning techniques to cope better with pain isn't useful as along the way, and perhaps at the end of that journey too, we will likely be in pain and I think there are a variety of ways that we can cope better with that - from re-framing those thoughts as UnXmas suggests, focusing on positives and similar strategies through to antidepressants and painkillers.

But I would hate for anyone to give up and accept the pain without exploring opportunities to treat the cause or if it becomes necessary to treat the pain.

I've had doctors say to me "well you have Crohn's I'd expect you to be in pain" but never bother to assess what was causing the pain or to understand how severe and debilitating the pain itself was. As a consequence I lived in very severe pain for years, and in all likelihood had more of my small bowel removed than would have been necessary if I'd had doctors who cared that I was in pain and that the treatments weren't working, also an untreated abscess that damaged other organs.

In short my advice would always be don't accept the pain unless you have to - and if you have to learn to live with the pain then there are things that can make it easier because human beings are resilient. The problem is too many of us aren't getting adequate treatment and we are so resilient we learn to live with pain when the cause could be treated and in the meantime we may be allowing that untreated disease or complication of the disease to damage our intestines and sometimes other organs too.

I also think we need to be compassionate towards ourselves when we struggle to deal with the pain, instead of thinking "others deal with this so why can't I?" because there can be a lot of factors that can affect how much pain we can tolerate and how well we can cope with the pain - some of these are down to individual response and perception of pain, and prior experiences of pain, but it can also depend on other changing circumstances of our lives and the various stresses that we may be dealing with in addition to the pain. For example, it can be a lot harder to deal with pain if you lack support and understanding or even just companionship, or if you're stressed about work or money and have to deal with those pressures at the same time.

mikeymac: I'm concerned that the anxiety and depression (including the suicidal feeling you are having) may be a side effect of the Klonopin and I wrote more about it in reply to you here. I think it's something you should talk to your doctors about as soon as possible to see how you could safely come off it and whether you need to replace it with a different med without those side effects. It doesn't sound like you are actually on any meds for pain though.

UnXmas · Mar 14, 2015

UnXmas,
Would you mind putting the advice about accepting that you will experience pain into the context of the pain meds that you take? I imagine that you mean that despite taking pain meds you still experience a certain level of pain and don't expect your pain meds to take all the pain away, but I think it might be useful for you to clarify that. Thanks

I'd also like to make the point that pain can be an important sign that something is wrong - even if it's not an emergent situation it can be a sign that the disease is not under control and better treatment would help this. Crohn's may not be a disease with amazingly successful treatments but there are treatments - a whole range of them - and I think the idea that we give up and accept pain is a potentially dangerous one that can lead to more complications and a poorer longterm prognosis and quality of life.

You ask a good question and I'm sure I'm going to contradict myself a lot answering it, but I'll try anyway. Perhaps my mindset doesn't fit with Crohn's very well. As I said in my first post, what I came to accept is that I can't have children, will never be able to work, will depend more and more on my parents, and will experience continually deteriorating health. Crohn's doesn't require acceptance of that kind of life, so perhaps accepting Crohn's rather than hoping for remission or just improved symptoms is needlessly pessimistic, even in severe cases.

However, in answer to your question about my use of painkillers, I'd apply the point I made about symptom management in my first post: I'm still always looking for treatments that may help any of my physical symptoms, but no longer with the sense of desperation that I had had previously, when I felt I had to get healthier in order to have a life.

I want to treat my pain because I want less pain, but I don't catatstophise from that with thoughts along the lines of "if this pain doesn't stop, how am I ever going to be able to work/have a social life/go on that shopping trip I've planned for tomorrow/live a normal life."

I have pain, I'm trying to treat it, but it is what it is.

Perhaps I should also add that physical pain is a relatively new symptom for me, and wasn't an issue when I was in my catastrophising mindset. Even now, it's not severe, not unbearable. I used it in my post as an example as that's what mikeymac said he had desperate thoughts about, but "pain" could be any physical symptoms, or the consequences of living with a chronic illness, or the emotional pain that comes with it.

And mikeymac, I do hope my post didn't upset you, or anyone else reading, if it sounded like I was implying pain should just be ignored. Crohn's and its complications and its pain can of course often be treated, so my way of thinking may just not be that applicable to Crohn's, but perhaps if you're going through a really bad period and have already sought as much medical help as you can in the short term, it might help to try to think of how to live with some pain rather than feeling you need the pain to stop in order to live.

24601 · Mar 14, 2015

I think if I tried to explain how I have dealt with pain over the years with Crohn's it might well sound like I was contradicting myself too.

There were times when I put up with desperate "I can barely remember to breathe" type of pain for months and years, where I would just shake my head when someone asked me a question because I was in too much pain to form words, and when I look back I feel like I can't remember why I did that. But at the time it made perfect sense, to me at least. I had useless doctors who told me that pain was something to expect with Crohn's and didn't treat my disease effectively and said surgery should be symptom driven - which isn't entirely untrue but when you combine that with a person who expects themselves to be tough enough to deal with the pain and a surgeon who (quite wrongly) told me that surgery wasn't warranted yet, the result was me forcing myself to endure almost unbearable pain. I took painkillers but just enough to take the edge off the pain and stop me feeling so distressed by it, not enough to really sleep but just enough to lie there in a haze of relative well-being despite the pain. I quickly stopped upping the dose as I realized it would just continue that way. What I'm saying is I learned to live with pain, in a way, in that I accepted that I would be in a lot of pain. I was determined to wait it out, hoping that a better alternative or some kind of help would come along. But that attitude was damaging for me and the severity and duration of the pain was quite traumatic such that even after I had surgery and was no longer is such terrible pain I felt for a long time afterwards that I was dealing with the psychological effects of it. And looking back it was largely unnecessary.

After that I became quite wary of pain meds, because they had essentially allowed me to carry on for longer in a situation that had a more effective remedy and to ignore what was really happening with my body. But I was still in pain and that was quite demoralizing. Sometimes I think I found it harder to be in less severe pain simply because I'd experienced so much before and I really wanted it to go away completely.

Anyway (I don't really know how to make things succinct but I'll try here, bear with me I think it'll have a point eventually!) things went downhill to surgery no.2 all while I tried EEN, SCD, antibiotics, whipworms and to get better doctors who would figure out what was happening with me. I thought I was getting somewhere with that but actually all that happened was I lost nearly half my bodyweight, developed an intussusception that meant I could often not even keep water down and spent most of my life throwing up green bile and lying in pain with little alien-like arms punching though my abdomen (actually visible peristalsis). And I still had a doctor who said to me "There is nothing I can do for you. I cannot help. Go home and eat." And, for the record, that was at St Marks which is a national referral centre for intestinal and colorectal disorders.

So for surgery no. 2 I was severely malnourished, developed a post op abscess, was in and out of hospital having it drained, thought that I'd mainly finally recovered from the surgery and was feeling a bit better but quickly knew that I did not feel that well. I kind of accepted that I would always not feel that good though - but again acceptance turned out to be bad for me. I got really good at being so positive about things and being healthier than the dreadful state that I had been in and the few things I could manage to do that I and my doctors managed to ignore the fact that I was really unwell and I actually had never completely cleared the infection from the second surgery. So I ended up in A&E at 4 am almost four and half years after the previous surgery and long story short all the doctors I saw there were a bit worried I wouldn't survive but I had my third surgery and here I am (plus one more surgery because apparently Crohn's can't quit). I am down a bit more small bowel than is ideal, although I somewhat miraculously have thus far avoided suffering from short bowel syndrome. But I'm also down two working fallopian tubes and now according to some of my docs have "a right to pain" from the scar tissue that formed when the infection stuck bits and pieces together.

What I've been really trying to get at, UnXmas, is that (and I'm not trying to say that I have as much to deal with as you or anything like that) there is a degree of acceptance that sometimes goes along with Crohn's disease that isn't perhaps so very different to your acceptance that life won't really be normal. I won't have children like other people. I haven't had much ability to have a social life over the last 20 odd years. I graduated from university but it was a battle and I had to compromise drastically on the social interaction side of things. I definitely didn't feel normal and couldn't do the seemingly normal things. And then I never was well enough to really work for long. I felt like I failed to keep up with everything and I couldn't meet deadlines and people thought I was a bit useless to be honest. I was exhausted and in pain but no one could see that, and anyway it was my normal and I expected myself to cope with it, after all I'd finished my degree with worse pain, I thought I could manage work. It was a kind of relief for me too when things got so bad that other people could really see the effects of the disease (tube feeding, wheelchair, life-threateningly low bmi) and it allowed me to make allowances for myself that I wasn't able to do normal things. But somehow I've never, even after all the treatments and two more surgeries, got back to anything like normal and I find it that much harder to accept this of myself since now I "only" have moderate pain and severe fatigue. I even think it sounds unreasonable of me to complain of feeling like this - since it's so comparatively well - but it's still not normal and I still struggle to do quite a lot of normal things. And I think even if I was suddenly healthy after 20 years that I couldn't now make my life entirely normal so there will always be a degree of loss and grief about the past.

My intention in writing all that was to express empathy for the need to give up on hopes of a normal life...not to sound like I'm complaining but I don't really know how that turned out. And also just to give a bit more background to why I feel the way I do about being careful when making the decision to live with pain. But I know that we're actually in agreement over the need to seek treatment at the same time as perhaps accepting pain. I just wanted to make sure that was the message that was coming across!

mikeymac - sorry I kind of hijacked your thread. I hope you're doing okay.

mikeymac · Mar 14, 2015

For example, it can be a lot harder to deal with pain if you lack support and understanding or even just companionship, or if you're stressed about work or money and have to deal with those pressures at the same time.

mikeymac: I'm concerned that the anxiety and depression (including the suicidal feeling you are having) may be a side effect of the Klonopin and I wrote more about it in reply to you here. I think it's something you should talk to your doctors about as soon as possible to see how you could safely come off it and whether you need to replace it with a different med without those side effects. It doesn't sound like you are actually on any meds for pain though.

You know something you made me realize something. I have been on kolonopin for a long time I've tried to ween off so many time but my stomach and digestion always seems to act up when I'm just about to get off of it. another point is yes, I do live alone and during these times companionship would be nice. I mean more then just a chat session online. 24601... You kind of hit it on the head with me on that. I am going to see a mediation/yoga therapist soon. In hopes of helping with my social life.

And mikeymac, I do hope my post didn't upset you, or anyone else reading, if it sounded like I was implying pain should just be ignored. Crohn's and its complications and its pain can of course often be treated, so my way of thinking may just not be that applicable to Crohn's, but perhaps if you're going through a really bad period and have already sought as much medical help as you can in the short term, it might help to try to think of how to live with some pain rather than feeling you need the pain to stop in order to live.

Don't worry, I've been around long enough to be understanding and I didn't take offense to that at all. I just thought maybe you had some magic that I was searching for, thats all.

24601 nailed it though for me. I've been trying so hard to get off kolonpin. I know I've been taking it too long. But I also know I need to ween off I just can't just quit. And I have started to work better with my GI with my crohn's but he wants to get this upper part taken care of first. He was surprised when I told him that taking all those acid blockers actually caused me more pain. anyways, Thanks to the both of you.