# Will I ever get out of this?



## nagelbitarn (May 12, 2015)

I am a 22-year old male from Sweden. Since I was about 16, I have been fighting this damn illness, and I feel like I'm running out of options and also hope, which is partially why I'm joining this forum. Maybe someone has had success stories and/or can be supportive, but right now I feel as if I will never get better.

When I was 16, I remember being very nervous about things, and especially one time when I was going to the city to meet a girl and watch a movie. I wanted to throw up on the bus, and for the whole movie I just sat there being anxious and felt sick. I don't remember exactly how it was triggered, but I think I somehow connected this feeling of sickness to being on trains and buses and had some kind of panic attack once. I think this kind of set this off, but I don't remember exactly when or how. After this I changed all my habits, going on the bus and train was painful because of the anxiety I still think this was mostly a psychological issue. For whatever reason, this problem seemed to manifest more and more in my stomach. I started forcing myself to going to the bathroom every morning before I went on the train/bus to school so I wouldn't have to worry and have a panic attack about being on the bus and maybe having to go to the bathroom while on it. This must've somehow fucked up my digestion, and it hasn't been normal ever since.

I never got around to adressing it, because I would still attribute it to the psychological issues I had, of being afraid to ride the train without going to the bathroom beforehand, etc. I didn't want to be in the city, because I felt anxious about being far from bathrooms, etc. As I got older, these mental issues seemed to dissipate and I would no longer get anxious about riding trains and buses, at least not consciously, but the stomach problems remained.

I moved away from home and started studying in a different city, and all of a sudden there was a big red puddle in my toilet after I had pooped. I was frightened as hell, but didn't look into it right away. As time went on, it didn't go away and would come back in periods of about a week. I finally got the courage to see a doctor about it, they ran their tests, I had a colonoscopy and they could see inflammation on the intestinal lining in the rectum, said it was probably UC, prescribed me some meds, told me that I might have to remove my colon someday if I'm unlucky, but I needed to be ready for the possibility. I cried, but was still happy that I finally had an answer to this fucking torture I had been suffering for so long. All was well, or so I thought... The tests from the biopsies came back negative. There was inflammation, but not of an IBD-type, also the meds (pentasa supps) were not working at all. I didn't feel a bit better.

I've seen so many doctors, I can't remember half of them, and I've lost count. The next colonoscopy I did was after having bled for a week while pooping, I thought they would finally see that it was indeed UC and treat me accordingly. Well, they found NOTHING. The intestinal wall was remarkably normal and non-inflamed. I was actually disappointed. I went through some more tests, including blowing up a balloon in my rectum to see if I had increased sensitivity, which I didn't, and bloating/stomach pains have never been my main issue. They also checked the pressure in my rectum which was very high apparently, I don't remember the units, but they were twice the normal amount for people my age, and they said this might explain the bleeding and feeling of urgency/incomplete defecation I was experiencing. I got some kind of salve prescribed, and this, along with a strict fodmap diet for 2 months and meditating twice a day for this period actually made my stomach somewhat better. I felt like a person again, for about a month before I went home to my family for christmas, decided I didn't want to be a burden by making them cook dinners with my diet in mind, so I went off it for a week. This was apparently enough to completely blow up my stomach all over again, and I was right back where I started. I've since tried the fodmap diet again on its own with little or no success, meditating sporadically and not using the salve (it was supposed to be a short regimen to help for the long run).

Right now I take imodium whenever I am going to travel, because it always seems to get worse, even though I don't get anxious consciously any longer. I take CBD-oil, 45 drops daily since about a month back, but they don't do anything. I have also tried added fiber (lunelax it's called here), which didn't do much, and now here I am.

6 years since I started this journey, 6 years wiser, but still so clueless. I have absolutely NO idea what could be the cause of this as the doctors have ruled out everything except IBS, even though I still have blood in the stool every now and then. The doctors seem to look at me as a nuisance because they don't have a clue as to what it could be and are out of options, pretty much. They've given up on me. The fodmap and meditation were never suggested to me, I found it on my own.

My symptoms are mainly alternating constipation and diarrhea, mostly diarrhea, and even when I'm constipated I'll feel like I have to go to the bathroom, but nothing will come out. When I'm not in the bathroom I have some flatulence, but not a great deal. The most prominent symtom is actually feeling like someone is squeezing my rectum with a really tight grip (yep, the double pressure I spoke of earlier sounds about right). This feeling is usually at its absolute worst after I've been to the bathroom, and it goes away very gradually over the course of a few hours after pooping.

I am getting increasingly unhappy and see this as my absolute nemesis. I feel like I can't be happy until this problem is resolved, but I can't seem to find a way. Every waking second I have discomfort from my stomach and rectum. Every time I get asked to do something I have to consider how my stomach will be during that day. I don't want to travel because I know I will feel like shit during the entire thing and it will ruin it for me, and now the depression that has come as a result of this won't let up. I feel like I'm drowning, but I have to keep going with my education, and I'm short on money so I have to work during the summer and I don't feel like I will have any time to just relax and enjoy my situation.

So what are you guys' suggestions? I can't think of anything to do except going hardcore with the relaxation exercises again, which seemed to help, but since I don't know what exactly did help it feels like such a hassle to try every single thing at once, because just ONE thing is annoying as hell in itself to keep track off.

Sorry for the novel, thank you very much if you had the patience to read through it all, I greatly appreciate it.


----------



## jaumeb (Sep 1, 2014)

There are some success stories. Keep learning and telling us about whatever you try to manage your symptoms. And don't forget to post here if you finally solve your issues.


----------



## Sgali (Aug 27, 2013)

Have you heard of GAPS ? Gut and Psycology Syndrome. They beleive there is a strong connection between the brain (anxieties) and the gut ,so do I. Also, do a search here on 'How I cured my IBS' by Sgali. I have been symptom free for several years, there is hope. Good luck.

Check this page out, Medical Dr. who thinks Medical establishment gets it wrong when it comes to IBS.

www.gutsense.org


----------



## Skwicker (May 12, 2015)

Hi! I'm sorry you are going through this at such a young age, during what should be the prime of your life. Im older (57, female) and have had your exact symptoms and misery for 13 years now. I can't imagine dealing with this in my 20s! But I want to tell you there is hope, but it's not an overnight cure. I decided to become my own health detective after several years of medical tests and diets that my doctors recommended. I even got my Masters Degree in nutrition because I wanted to understand it. Here's what I know for sure: You need to start with the Specific Carbohydrate Diet to allow your gut lining to heal. There's a book called Breaking the Vicious Cycle by Elaine Gottschall that explains it. It helped me within days. Also, those of us with IBS-D have a hyperactive enteric (gut) nervous system that is totally tied to stress and anxiety. I used something called The Healing Code to help my stress (it's a book). And stay in a support group, because feeling safe and maintaining hope is crucial. I wish you success


----------



## IBS & Surviving (Jun 24, 2014)

You may need to do everything! It's unfortunate, but true. If doing everything works for you, do it.


----------



## jaumeb (Sep 1, 2014)

Skwicker said:


> You need to start with the Specific Carbohydrate Diet to allow your gut lining to heal.


I've been following the SCD for six years. It has not been a final solution, but it was a step in the right direction.


----------



## nagelbitarn (May 12, 2015)

Thank you all for the words of encouragement and for reading my story. I am currently under a lot of stress from school and some other things, and I think this can be a big contributor to why I feel particularly bad right now. My stomach has been absolute crap back and forth over these past six years, but I've always felt like I sort of had it under control, and that some day I would find a "cure", I am trying everything in my power still, I won't quit until I die, and let's hope that's a while, even though this illness makes living tough sometimes.


----------

