Crohn's Disease Forum » Your Story » My story to date, FEELING WORSE THAN EVER

07-14-2015, 10:27 PM   #1
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Location: los angeles area

Well, I will try to make this as brief as possible although it may be a bit long, please forgive me for that.
I believe I have had some form of crohn's since I was at least 13 yrs old, however I was just diagnosed in JAN of 2012, at the age of 33.
A brief description of what brought on the flare that got my crohn's flaring and making itself very well known.
Feb '11-my best friend, more of my brother than a friend, got sick, bi-lateral pneumonia and H1N1 swine flu. He fought in ICU for 63 days before finally sucombing to the stress on his lungs. I never thought in a million years that anything like that would have occurred, let alone with the outcome that has come to pass. Theres obviously alot of stuff that occurred in that period that was beyond stressful.
After his passing, I took care of his fiance, as the 3 of us were best friends and she had noone really to help her, plus I looked after her while he was in the ICU. After about 2 months she initiated a relationship that broke the friendship boundary. I struggled with this as well but knew if anything, at least he knew I would take care of her, and I know he would not be upset. However, the fact that we were best friends, he confieded in me alot, and certain things that I felt were a tremendous stress on him.
I had now somewhat stepped into his shoes and as life began to somewhat resume to some level or normalcy I began to feel the stress as she could not go back to work, eventually losing her job, and a slew of other little problems and things following. I was slowly going broke, and then she found a job that was much better paying, so I felt things were on the mend, well, she couldn't hack it, and for w/e reason had to quit. Not too long after she had left me for a guy she met at her best friends, moms funeral, to which I did not go, as I had to work, to support us... I work from sun up to sundown in tv/film industry. The months leading up to her leaving I was slowly shedding weight, but I thought that this was due to the stress etc... but even she noticed that I was starting to get excessively thin. I am 5'6" and was 145-160lbs summer-winter weights, at the time she left me I was down to a bout 126 lbs, at the moment I pretty much hover 114-118 lbs.
The reason I brought up these two events is because within less than a year I think i went through some of the more traumatic experiences of my life, and thats not to say that I have not experienced rough times, my 3 yr old brother drowned in our pool when I was 8 and I was supposed to be watching him. I could go on, but I'll just say, that was at 8 and I have definitely had my unfair share of shitty experiences.
So, as she left me, at the time, I was having lots of stomach cramping, waking up every 2 hours to have really extremely "child birth" like bowel movements that would leave me wiped out where I could barely walk. I had also had fistulas in the past and one of them was definitely becoming active again, or it was a new one.
So, shortly after she left in jan'12 I was diagnosed with crohn's, and the next month I had my appendix removed in an emergency surgery, during which they discovered 8ft of the large intestine i believe, that they wanted to remove upon exploratory surgery, to which my parents opted against.
A month or 2 after that surgery, I had a flare which began as a 103 fever, and upon being checked in, I ended up spending a week in the hospital, and 5 days with no food or liquid, boy that sucked. So, since then, I have tried 6mp, humira, I am on remicade at the moment, however, honestly, nothing has ever seemed to help, or work, and now it seems that it is getting worse. I have become dependant on norco, as it is the only thing that literally gives me relief from everything, the pain, nausea, u name it, it helps it. I know some people disagree, which is fine, but, when I feel like I do, it is the only thing that I can turn to, to an extent, but even that can only work for so long. I am not sure I would still be here, had it not been for them, and I still contemplate whether or not it is worth it to continue to be tortured with this disease. My most recent visit to the doc, when I told her that I feel like it is worse, the pain, the cramping, the nausea, the b/m's, and her response was that at this point I might require surgery, as the numbers from my test regarding inflamation, have been on the decrease over the past 3 months, so the damage must be due to long term scarring which is ir-repairable. I have felt that surgery was coming, however, I am just scared that it will just come back and attack healthy part of the intestine once all the bad stuff is cut out.
I know there are people out there, that are dealing with alot worse, but I must say, that after losing my 2 best friends, and the manner in which that all went down, I really do not socialize, and have become very much an introvert, due to the crohn's but also due to those events a couple years ago. It is hard to let go of, as all the things in life that I aspired for, were things that my buddy and I would always include the other in any plans or business ideas or you name it, we were partners in crime, partners for life, he was my right hand man, and I was his. Now that he is gone, as well as her, I really find myself not wanting to deal with people. He and I were so much alike that we very much knew each other and we also really understood each other. In certain situations we wouldn't even need to talk to know what the other was thinking. I truly feel as if I am enduring this alone. I do have a family that is awsome and supportive, that I do live with, it really is just not the same. Most friends I do have really don't get that the reason I stay home unless I have to work, is because I am always so exhausted, I am constantly in and out of the bathroom and not to mention the smell of my movements is so rancid in the last 4 yrs it is unbearably toxic, plus after a movement, I am usually so beat up, I barely have enough energy to plop myself in bed. Anyhow, I think I am done ranting, I just have felt like venting or getting this off my chest, and I can't tell you how many times I have written this draft and then just never posted it, sat up late at night, just staring at the screen, wondering if its even worth posting? is it even going to make me feel better..... but fuck it. Thanks for reading it if you did, sorry for the long drawn out story.... Take care everyone
By the way, you know the crazy scary fucked up thing, is I still think about her and miss her.
07-14-2015, 11:50 PM   #2
Lady Organic
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Hi BigBoss and warm welcome!

thanks for sharing and I am sorry about your current and past struggles. Does your doctor have another medication plan for you since your current meds seems not to help? Have you tried methotrexate? or have you tried any diets? you can look in the Diet section of the forum for SCD or IBD-Aid in my signature. such diets help some patients. have you ever participated in community centers? I find its a great way to meet nice people, learn new things, change our mind and create new possibilities. We can volunteer or simply participate and meet new people. could be something interesting to explore for creating new bonds and help leave the past behind, wishing you well!
''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
07-15-2015, 12:31 AM   #3
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Join Date: Jan 2014
Location: los angeles area
Thanks Lady O,
Based on my history, as well as ct scans/mri/colonoscopy, and the fact that I have had humira in the past, with no success, as well as at the moment I have been getting remicade infusions as she feels that there are better results compared to the humira, no she did not discuss a plan for future medication she feels that surgery is a better route. She also did mention that I might want to go to get a second opinion. The other thing she stated, as I mentioned earlier, the bloodwork they do to measure inflamation has been going down from one infusion to the next, which should indicate that the inflammation is going down, which one would think would reduce the level of discomfort, pain, etc. and the fact that I have been feeling worse and worse, and food reacts just as bad if not worse than it was, to me, is just indications that there is more permanent damage in the form of scar tissue. I just want some kind of relief, I hate eating, I hate going to the restroom, I hate being so tired all the time.
Regarding methotrexate, no I have not tried it. I have not tried any diets per say, but I just eat what I can which is really not much. I mean just like everyone else Im sure that through trial and error you find out those really detrimental foods that can put you out, at least I know of ones that can put me out. Like if I eat an apple, forget about it, I am in bed in pain, in the fetal position for at least a day, probably 2, and goin to the restroom is extremely painful.
No, I have not participated in community centers, I honestly have no patience for most people and things I find or think should be common sense, it seems our society is becoming or has become dumbed down. I really have no faith in our society and really don't have much of an interest to meet new people, only because I would prefer not to be let down, it isn't that I don't have a desire to meet new people, I guess I just have high expectations. Plus I have plenty of things on my plate that I have been putting off, that desperately need to get done around the house, I have cars that need restoring, I run my own business as well and need to work as well, I just feel so overwhelmed it's not even funny. I really appreciiate the response. Thanks for your input.
07-15-2015, 08:50 AM   #4
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You have been through a hell of a ride, sorry to hear that
From your test I feel that you are still very much under the cloudness of the traumatic occasions running in your life, as well as un resolved issues in the romantic angle.

While I dont like to over exaggerate the mental side in Crohn's, I do think that you may have some relief once you solve some open issues on the mental side.

I am so sorry you lost such a great friend; maybe your definition of a brother or family is a better one, since what is family actually ?
Your words about soceity touched me deeply, as I used to have similar feeling for many long years. I do feel so to sone extent; but along-side, I just let myself enjoy moments with people that I care for, without putting it all in the same bucket. I dont see this as a double standard anymore; we suffer enough also without social isolation.

I know those may sound soreal to you at the moment, but still...
- Have you considered to take a pet ?
- Is there any chance that you can get away for some time, take a trip to see some views and have a dip under the sun ? Maybe this will get you some time to recover a bit ...
- Try reading "Man's search for a Meaning". It is not an easy book at all. But it did something for me....

Well, all in all, I pray for you to get back on your feet. You deserve better.
07-15-2015, 09:50 AM   #5
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Welcome to the forum Boss,I'm at a loss as to how I can help you,but you've come to the right place for support and advice,and friendship.You have been through so much,and my heart aches for you.But you've taken a step in the right direction,by letting us into your life.Things will get better.I know you're still grieving for your close friend,and also you've lost what you thought would be a life partner.You've had a bad deal all round,from a very young age.But you've come this far,and who knows what great thing are in store for the future ? Very best wishes,we're always here for you.
07-16-2015, 12:36 PM   #6
Lady Organic
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I feel you have misconception of community centers or volunteer work. organizations helping child victims of sexual abuse, sick kids, elderly, helping immigrants integrate society, for instance can be extremly rewarding and open new horizons. They always need people to get things going in the objective of better social climate, better society. I feel much better since I joined the community 2 years ago. I was miserable with my new onset of arthritis and thought my life was over. community work has helped me tremendously, not only in deflating my big ego, but also helped focus on other things than my medical conditions.
07-16-2015, 02:16 PM   #7
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Join Date: Jan 2014
Location: los angeles area
Well, it is very possible that I do have a misconception of what community centers/volunteering really consists of, and I'm not claiming to know it all by any means. Although growing up just until fairly recently my mom volunteered quite a bit and worked in lots of community outreach programs, i spent a lot of time in inner city day cares, exposed to diversity at a real young age, so it was hard for me to understand racism at a young age. Anyhow, sorry for the tangent of sorts.
By the way regarding a pet, I have a younger brother, he/we raised 2 pitbulls from pups, one is about 2.5yrs and the other is about 1.75yrs. They are def great to have and def help lift my spirits daily. I dont mean to sound totally negative, as i do have good things "going" for me, one of those being that i own my own business, which makes decent money, and at the same time allows me to travel and see this great country, as well as i bit of Europe. I recognize how fortunate i have been in general compared to most. Maybe i dont give myself enough credit at times for my accomplishments, specially maybethose as of late. But i just am so tired. Tired of my guts feeling like they are on fire... tired of having to eat... digest... living on the throne... having a raw rear... being exhausted.... not sleeping... waking up to excrete boiling battery acid... [email protected] my pants cuz I cant make a 2 mile trip home in time.... having to pull off the hiway to sh$t in a bucket i keep for 911s... feeling naseua out of nowhere specially as i sit down to eat... not being able to eat foods i used to love... lookin like im dying of cancer[5'6"/116lbs]... people telling my that i must be wrong when i try to explain how detrimental greens/fruits/grains/nuts can be... of feeling utterly alone in more ways then 1... im just tired. Feels like trying to recover from a 24 hr stomach flu that has literally lasted 4 yrs now.4 I aoologize, i know i seem to get down on myself, and i'm not lookin for sympathy, just a place i can get this off my chest. I mean nobody any disrespect. Thx for everyones input/support, off to my remicade treatment so i can feel miserable thd rest of the afternoon.
07-16-2015, 10:18 PM   #8
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Hi BigBoss

Feel free to vent,we need to let it out.Stress is a big factor when dealing with IBD.You have been through a lot.I'm glad you recognize the positives in your life as well as your challenges.It sounds like you have a lot to be proud of.It is true there are those worse off than you(me too)but what you are going through is real and shouldn't be diminished.I don't mean this as sympathy...more like empathy.We may all be different but able to empathize with others.

As for diet and nutrition perhaps this link may help. A place to check out if you haven't already.

There are even some lighthearted threads in the members only section. it is nice to check out a thread that is not so serious,get a bit of a break.

Keep us posted.
"It does not do to dwell on dreams and forget to live."
07-16-2015, 10:49 PM   #9
Join Date: Jul 2015
Location: Montgomery Cty, Maryland
Hi Big Boss.

Your post is timely. I have been going through a flare myself lately but its mild compared to yours. Others have offered great support and food for thought (the only food we can really enjoy in these days) - but I want to talk about the emotional piece. I couldn't get a grip on my flare until I figured this out so I hope that maybe through my telling we both get something out of it (as I did with your story - I hope it provided you some relief to share it).

My suggestion is that with every cramp, bm and bite of food you take - you literally, out loud, tell yourself..."its not my fault. i don't need to punish myself. i deserve the best"

I'm not a mystic, mind-body awareness type. Like you, I am a desperate type. I read this affirmation tip somewhere, laughed it off, and in the midst of a cramp from hell last week just started saying it. Every time, all day.

Is it the source of my flare abating? I dont know. But I do know that the gut is where the nerves are. I do know that like you, I have a childhood issue I live with every day. I do know that I am now the same age as mother was when she died of cancer. I do know that took care of people I loved with mixed results. I also know that these things all come back to us in mysterious ways. I felt like my crohn symptoms were telling me in no uncertain terms to slow down, pay attention to how "I" feel and not everyone else, stop punishing myself for the past or the present, be proud and stop carrying all this weight/baggage around - weight I chose to put on myself. No one did this to me. It was as if my body was trying to purge all this emotional baggage but my mind kept hanging on. I have made the past my burden...when I could make it my badge.

"its not my fault. i dont need to punish myself. i deserve the best"

I think your concern that surgery will only be temporary relief is probably spot on. And you know this because you know the source, the root cause of your pain is emotional. Any chance for long term success must resolve the emotional. Maybe the next doctor -or second opinion - is a therapist/psychologist not a GI (I have an uncle who is a therapist and he provides me unbelievable relief and perspective).

This is what I thought I could offer you Big Boss that was different and worth trying. Its a solution we own - to a problem that we own. And who better to own it.

Strength to you
07-17-2015, 07:58 PM   #10
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Hi BigBoss - I am sorry you are suffering with so much physical and emotional pain. The nerves to the brain are in the gut as someone above said, so when I read that people with IBD have a higher incidence of depression and anxiety, I though, "Well of course they do! I have to live in this Crohn's hell all day every day! No wonder I'm depressed!" But now that I'm better, I realize that I have no more mood swings, no anger issues and of course I'm less depressed about life. Some of this may be due to no more Crohn's pain, I think some of it is due to the physical healing of my gut and my nerves not telling my brain to freak out all the time.

My disease symptoms seem similar to yours. I'm also 5'6' and have what I call the 110 barrier. If my weight drops below 110, I can't function. I can't think, I don't want to eat and I have no energy for even fun things. I know this weight is actually looked at as a benefit to women though, so I society makes it easier for me, but the physical draining of barely maintaining any body mass is the same regardless of gender. I also tried most of the drugs you have, and nothing helped me gain weight and absorb minerals, so I continued wasting. Also, nothing helped the diarrhea, which I hear a lot with Crohn's patients on standard therapies. The thing that worked for me was AMAT, which I'm sure you can find on here if you want to look it up. If you want more info from me, I'd be happy to give you the overview. I was in total remission in six weeks.

Know you aren't alone. The people here are great and we all deal with this horrible disease in our own way because each case of Crohn's is different! Yoga helped me a LOT with the stress of my disease and life in general, and feeling like I was failing at every aspect of life because I was so sick. I think Babyface's mantra is great. Sending peace and health to you, and a big hug.
07-23-2015, 12:43 PM   #11
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Join Date: Jan 2014
Location: los angeles area
I just wanted to thank all of you who posted and those who took the time to read this as well. After my most recent remicade treatment, I went online to see my blood test results, and it was def a bit disappointing to see that the crp? i think it is, went from 19 back up to 31, and it was around 34 when I started the remicade. So, I am getting ready to go for an mri, so stoked.... get to drink 3 huge things of dye, then microwave my stomach.
By the way, I def have no disagreements with the fact that the mental anguish is contributing to the "stress" of the cd, but, I just don't find that talking to some shrink helped. I think I would get more benefit out of opening up to people in forums such as this one. To say I think of my friend daily would be quite an understatement, I miss being able to talk to him. The situation that played out with his fiance, I still wonder so many things, which I should probably have let go, but, I must admit, it's hard to move on, while not really being able to move on from a physical/social aspect, meaning that the fact that I am not able to really socialize or do the things that I used to enjoy like going to the beach and surfing, working on/restoring my classic car projects, or just improving the house by being able to set out and accomplish landscaping tasks or small construction stuffs like building a bbq/outdoor kitchen or a new dog pull toy since he has more energy than the freaking energizer bunny. Unless I have some work, which is fairly easy for me, I pretty much do light stuff/cleaning around the house, some cooking, but mostly I spend my days in bed, watching tv, on the pc/phone reading. And if I eat, forget about it, even if its low residue, not only does it straight knock me out, but, I am normally awakened to the urge of having a stomach of boiling acid that needed to alleviate itself about 15 seconds ago. The following movement is subsequently painful, with a slight feeling of relief, to be just about immediately filled with the feeling of someone pouring molten steel into the void that had just been created.
I just finished watching a movie, total chick flic, called "catch and release". The reason was it happened to be quite weird that the movie in some respects had some similarities to my previous situation. It really made those feelings come back to the surface. Sorry I am rambling. I tend to do so as I am a bit anxious about the mri, the hospital I have to go to is the same one that my buddy passed away in, and I spent many nights there, I just find it hard to go there, especially when I have to have procedures, or even worse a surgery or anything that calls for anesthetics... anyway, thx again to everyone for the kind words and taking the time to read my post.
best regards to you guys
thx again
07-23-2015, 02:47 PM   #12
Join Date: Jul 2015
oh my gosh, crohns is tough!!! Take time to breath, listen to your favourite tune and allow yourself to be happy even if for just a few seconds! then these seconds may become minutes and then longer!!! You have to keep believing you will get better! WE have our knocks, we fall back and cry but we have to keep believing!!!
07-23-2015, 03:59 PM   #13
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Hi BigBoss, welcome to the forum. A lot of others have addressed the IBD and surgery side of things, but I wanted to say how sorry I am for the loss of your friend. I've also lost a dear friend very suddenly so I understand how shattering and stressful and utterly life-altering that can be. The loss of my friend was almost 17 years ago and it still affects me. I like to think that I've gained a lot of wisdom from the experience, though, so I hope it's okay if I share some of that wisdom with you.

My friend was amazing and kind and witty and so smart. He and I clicked on a level I've never felt before - I could talk to him about anything and he just "got" me. He was the only person who could really get through to me when I was dealing with an eating disorder. He was one of the most incredible people ever and so young. We were only 19 when my friend died. He lived with some friends, and one night their apartment caught fire. My friend woke up and pounded on his roommates' doors, yelling "Fire, fire, get out!" He kept doing this so that both of them would wake up and could get out but he did not make it out alive himself, he succumbed to the smoke before he could be rescued. His roommates both survived thanks to the actions of my friend. He literally died a hero, he saved their lives and gave up his own to do it.

What really struck me about the two roommates was how differently they reacted (not just immediately but over the years). They both lost someone extremely dear to them. One of the roommates (I'll call him T) was just as you described yourself and your friend - he and my friend were like partners in crime, they had grown up together and did everything together and just basically planned to continue doing everything together. T was in massive denial after our friend's death. He couldn't let go or move on and I'm sure he was in anguish. He was unable to deal with living his life alone without his partner in crime. He was unable to form a new life for himself. His life spiraled downward and he eventually started abusing drugs and committing crimes. This criminal lifestyle eventually ended his life, as a couple of years ago he shot himself in the head rather than surrender to the SWAT team after a pharmacy robbery gone wrong. Such a damn waste. He was 32.

The other roommate, J (T's sister), also had a hard time dealing with things for awhile and also abused drugs for a bit, but she successfully was able to move on after awhile and get clean. For her moving on meant moving to a new state and starting a whole new life - new job, new friends (she still keeps in touch with the old ones though), whole new life. Now J is one of the strongest, happiest and most gracious people I know in spite of everything she's been through. She's full of gratitude towards life. She's lost a dear friend and her brother (her only sibling) but she's become such a strong person and her outlook on life is one of happiness.

The big difference? I think that T felt such guilt that his friend died and he was still here. I think he probably felt like he didn't deserve to be saved, like it was his fault that his friend died. J, on the other hand, had the insight to realize that my friend thought so much of her that he literally laid down his life to save hers. She realized that she had been given an amazing gift from our friend, and that she needs to live a life full of gratitude and joy to honor his memory and to thank him. So she moved on and does amazing things (she's always having adventures like ziplining and kayaking) and I'm so proud of her.

I try to do the same - even though I wasn't there during the fire and my life wasn't directly saved (although he did provide the catalyst for me recovering from my eating disorder and probably indirectly saved me), I still feel a sense of needing to live a good, worthwhile life that in some way honors my friend's memory. I accept that he's gone, I think about him often but in a positive way, and I try to do things that he would approve of. I'm grateful for the times I did have with him, I'm so glad to have known him and for the positive impacts he made on my life. I wouldn't be the person I am today without him. Yes, I miss him like crazy and I'd do anything for 5 more minutes with him, but I also accept that I don't get to have that and that I have to be okay with me minus him. And I am.

My long, rambly point is, it's okay to let go of your friend. It's okay to be happy without him. It's okay to move on. Think about what he would want for you - would he want for you to be stuck on his memory and not able to move forward emotionally? Or would he want you to remember him fondly while living a good life? Think about the things you two would have done together - can you do some of those things by yourself to honor his memory? You said that talking about it on the forum might help, so by all means please feel free to talk more about it on here if it helps. I really do hope you're able to find a way with being okay with life without him - please don't let the grief and guilt eat you up inside. It's okay to be sad and you'll probably always be sad, but it's also okay to let go and move on. It doesn't make you a bad person or a traitor to your friend, I promise - just the opposite. You won't ever forget him but it doesn't mean you need to remain stuck in the grief. I hope you can find a way to be okay.

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