# IBS took away my world and finally starting to rebuild



## Caustics (May 5, 2012)

My story starts from when I was a kid. I have had IBS-C for most of my life, from 6 years old into my college years where I abused juices and chocolates to make myself go every three days. I was never completely dependable but I manged to hide what I had going on from most, I was able to work and go to school because of my abusive methods of management. I had friends and even a fiance none of which knew the full extent of what I had going on and the slew of doctors I was seeing in trying to be able to live like a normal person. Shortly after getting my associates my body started changing where I was having diarrhea and losing food tolerances, even to the point where I would vomit. Over two weeks I lost over 30 pounds and the following weeks I lost smaller amounts. My gastro doctor put me on *amitriptyline* to get a handle on the diarrhea and stop my weight loss. Shortly after that I suffered a *spontaneous pneumothorax *which is where your lung just collapses for no reason but my reason was because I lost so much weight so fast and because I was so thin as I was 102 lbs at the time, I was 140 lbs. I then spent the next week in the hospital with a chest tube and on morphine. During that time some of my other organs started to shut down and for a little bit they didn't think I would make it. At this point I was down to 95 lbs. I did manage to survive though sometimes wish I gave up then as I lost all my friends and my fiance not to mention the hell my life became.After that I spent the next year living on crackers and bread mostly with trips back to the ER ever once in a while. The next 5 years after that was spent in isolation with me running around New England seeing doctors and trying all sorts of medications not to mentions test and test. I wasted some of my time at the *Lahey Clinic in Burlington, **MA* but from them I learned of another doctor at* Dartmouth Hitchcock in New Hampshire*. Right when I lost hope and I thought they ran every test there was they had more tests and pending those tests that showed everything was normal for the most part they recommend I stop all my medications except for the laxatives I was using because at this point my IBS was back to IBS-C mostly and see a *physical therapist* that *specialized in pelvic floor rehabilitation*.I went and saw this physical therapist with little hope. I did the exercises and worked with her for months seeing her twice a week. Right when my insurance ran out for the year I started to notice food tolerances coming back. I wouldn't get sick with foods that would kill me normally, I was shocked! Sadly my physical therapist came down with cancer and I had to find another physical therapist which specialized in the pelvic floor which I did by February this year. I've been seeing her now and I have had incredible changes. My food tolerances changed enough to be able to eat things that add the fiber I need naturally. I work out and stretch with the physical therapist and now I even work out at a gym 2 or 3 times a week. Two weeks ago I've started to be able to have normal bowel movements at 3 to 5 day intervals without laxatives with little relapses here and there. Last time that happen I was 5 years old and currently I'm 31. I cried as I was so happy when this first happen. The only down side is eating is like a job making sure I eat X amount of this and Y amount of that everyday. The pelvic stretching and gym exercise added on makes it more like a full time job. I still have lots of cramping and pain specially after I have a bowel movement but still just to be able to go without needing a laxative all the time and being able to eat things like pizza and french fries is amazing! I've even put on 5 pounds at the gym in one and a half months, that's crazy! I'm up to 116.7 lbs! I hope as I continue this things will continue to improve, I've been so encouraged by this I've signed back up to college for one class as a test run this summer.The other huge down side to all this is the loneliness and isolation. I've been alone for 6 years, not a friend, not a lover, no affection, no one to share anything with. I've been trying to reach out, make new friends, maybe even find a little affection but when you're a male and sick/thin its nearly impossible. The mental aspect of this has taken its toll on me over the years and I'm not coping well, even seen a therapist about it but all they want to do is throw drugs at me like a typical doctor pfffff... Never! again will I do that. They have no groups for this sort of thing either in my area. That's when I had the idea to start a group for people like us and others who suffer with other things that also isolate them. A group not focused on solely getting better but a place to deal with the social aspect of being sick. A place to make new friends, maybe even form a relationship with someone who can accept sickness and imperfection cause well they are as well. Even when I was really sick something like maybe going to see a movie with someone or take a short walk with would have meant so much. I dunno maybe its a silly idea but we are all human, we need human contact and to feel something more than sorrow, pain, and loneliness. I'm going to bring this idea up with my doctors as I see them over the next month and going to ask around here about peoples thoughts on the subject and pending that I may try and start something in my area through meetup or maybe something through the local hospitals if they would allow something like that.


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## Dodai (Mar 30, 2012)

Hi, you have been through a lot and you are a hero in my eyes. Who knows, maybe this is one of your purposes (besides having family, friends, a career, a companion and a social life) in life to help others, time will tell. I hope one day that this will be my purpose too. I'm not sure how support groups form. But, I think you are such a kind soul to think of others while you are recovering. I think it's awesome and I hope you're able to do it. Idk if you isolated yourself from them and they gave up, which I believe they shouldn't have. If they did leave you because of your illness, don't worry, there are a lot of good people in this world (like you) and you will make friends again soon. Your story really touched me (like so many other stories here). I've been isolated too for the past 6 years and it's so lonely. I think with any illness, a lot of people get that lonely feeling because it's hard for people to relate with us, so we get frustrated and sad and end up becoming sort of a recluse. I used to have so many friends and now I just have a very few, plus I have my family for support. But, nobody but people like you or me who have suffered with chronic pain, which then leads to emotional pain becomes hard to bear. I also find that I get kinda sad that people just think my illness is not debilitating. I am so grateful for you that you are improving very well and on your way to keep this illness under control. I think it's great that you're going back to school. You are an inspiration to others in my opinion. I also would love to know if and when you can start a support group. I hope you do it. Wouldn't it be such a reward for you to help others just like the help that you needed? I think it's a great idea. I find helping others is a wonderful feeling. I help some people through phone calls with people who are either sad or hurting (one friend and family members). And, I try to help on the computer. I am in such pain and I'm trying to get my pain and symptoms under control so I could help others too.Thank you for sharing your story! I wish the best for you. Now go eat some pizza and french fries without fear. Also, this is the mom coming out from me; eat a lot of healthy foods too.Now is the time for you to have the life that you truly deserve. I wish the very best for you!


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## oceannir (Mar 6, 2012)

Just curious what type of laxatives were you using?


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## Caustics (May 5, 2012)

Thanks Dodai and I do eat mostly healthy now, in fact i've gone over to a mostly all natural diet but I splurge at least once a day or every other day







Truth is I am so thin that even my doctors are glad I'm east fattening food cuz putting weight on is rather important for me. As for the people who were in my life, they split around the time I went into the hospital. Even my fiance said to me, "you can't give me what I want anymore" I can't tell you how much that hurt, good thing I didn't marry her. I take some satisfaction that she is now married an miserable with someone else as she recently contacted me and was telling me about it, though I cut ties with her quickly. It's just hard everyone values people with careers and money. I was so sick I had to step back. I've spent years like the rest of you trying as hard as I can to get my life back but no one values that. I love when women say they want a motivated man, makes me want to go "so fighting for my life isn't enough motivation?" lol that's why I also want to start a social group, a place where no one has to face that sort of cold mindset of life, where people are appreciated for who they are and what they have been through.


oceannir said:


> Just curious what type of laxatives were you using?


I was using 1 Dulcolax every 3 days not counting the day I would clean out so really it was a 4 day cycle. I made sure I always have an empty stomach when I take the laxative too as food in the stomach seems to kill the effectiveness. Normally the next morning I would go after having something to eat and drink. My doctors where always kinda surprised it only took one for me as most people with IBS-C needed more but I also never let it go longer than those 3 days as I just couldn't really eat, sleep and the anxiety, discomfort and headaches got to me. At times I would get IBS-A too which diarrhea was always a scary situation considering how fast I shed pounds when that happen. I always had amitriptyline on standby just in case it went over to full IBS-D again. So yeah I was always trying to balance C vs D. Motility was always my major issue and since I only eat mostly turkey sandwiches and bangles along with small portions of fruit things didn't move well. Everything else for years would make me sick. I tried fiber sentiments, miralax and all that #### they tell you to take. Did nothing but bloat me up, made me vomit or had diarrhea with horrible discomfort and bloating. Things were so desperate they even put me on things that were black listed by the FDA. Surgery was even on the table for a bit. Generally I felt like I had been set on fire and punched in the gut for years really. So I developed that routine with the laxatives. It kept me in a stable state in a way but never getting better, I felt so stuck. My biggest problem is that I still need to take them but slowly I'm weaning myself off them which is amazing. I no longer really eat any bread for the exception when I splurge, I go through about a box of Kashi Heart to Heart cereal every three days so I'm getting lots of fiber of all the varieties, I exercise to the point of breaking myself lol and I drink lots of fluids and just generally eat healthy.I started the physical therapy last July and didn't see any differeance in my food tolerances till October where my insurance ran out till after the new year. Then went back in February of this year and that's when things really started to change and I was able to really change my lifestyle. First with food then bumping up my activity. That's when I really saw things change, I now commit two hours a day to exercise. I know this course wouldn't work for everyone but it helped me though its not a over night change, it's painfully slow and work, lots of work to change everything. I still don't know if i'll continue to get better but things have gotten better enough to where I can start living again so its enough to make me excited.


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## Dodai (Mar 30, 2012)

Hi Caustics,I'm sorry that you had to go through that with your fiance. You're lucky that you found out sooner before you married her. I agree with you that fighting for your life does make you a strong person. Strength doesn't come from how much money you make or how many things you have. Having material things isn't what is important in life; your health and loved ones are. All the rest like money problems are extremely hard, but as long as we have are health and support from loved ones we can get through anything. Times these days are too materialistic and greedy. All this need to have a successful career (money-wise) are very stressful for young adults these days. Especially when we are in a recession. I wish we could go back and make times a little bit more simple; meaning to be more modest and not have to have the best of everything. That would eliminate a little stress for some of us.Hope you're doing well. I'm glad you're eating well. You will put on weight and enjoy doing it. I wish I could eat those things...yum yum!


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