My name is Amanda. I’m a 44-year-old single mom. I really need to vent right now, and I don’t have a support system or know anyone that would understand what I am going through. It’s not exactly the kind of thing I can post on Facebook. I feel overwhelmed with everything and like I am going into a depression because of it. Maybe it will help to post here. I will leave a lot out, but try to include what I need, to get my situation understood. Maybe someone will have the time and inclination to actually read the whole thing.
Rectal pain, frequent blood and mucous throughout the day; sometimes severely constipated for weeks but still passing a lot of blood and mucous; other times having frequent very small liquid/mucoid to semi-formed stools (with blood and mucous) around 15-20 times during the morning/early afternoon, with cramping. Seems like the symptoms vary and change all the time.
Might Have Colitis
Four years ago, when I realized hanging on for the sake of my kids was not doing them any good, I gave my abusive husband an ultimatum to get help for his problems or I would take the kids and live in the car if I had to. Being a pathological narcissist, his response was drive off to Alaska (from SC), while the kids and I were at church one day, and after living it up as a bachelor for a while, start a new life with a new family. Since I had been a stay-at-home homeschooling mom (the kind that uses cloth diapers and cooks three meals a day from scratch, keeps the house and yard perfect, heats with wood, grows and cans food, sews, shops garage sales, etc.) for many years, I was not able to get a job as a nurse, even though I had taken a refresher course and had applications in everywhere for 2 years. In this area, there is such a glut of nurses that even many new graduates and experienced nurses are not able to find work. I finally realized my only option was to return to school for my BSN.
It was a long, difficult struggle to break free of his financial and psychological control, even with him thousands of miles away. But I managed to file for the divorce and get some temporary spousal support in order to support myself and the kids while I get through school. I had to sell the house, and after sending him his share of the equity, downsized to an 850 sq. ft. house that needed a lot of work to be livable. I did all this work myself, over a long, hot, humid summer, while our belongings sat in a mobile storage unit in the driveway, which I had to unpack and repack every time we needed something. This was difficult, as my physical problems seemed to get worse.
Over the last two years, things have started looking much brighter. After becoming relatively free of my ex’s psychological control and abuse, after getting this house and property nice and comfortable, while working through year-round full-time college and homeschooling my kids… I started seeing a light at the end of the tunnel. Although my physical problems started getting worse, we have really enjoyed the peace. Although I have not had time to give to my kids and we’ve had to struggle in some ways, without support of family or friends around, I have been able to look ahead to my graduation and finally becoming independent and having more time to give to them. I have truly been happier than ever and very optimistic about the future.
But now my bowel problems have progressed to a point that I have not been able to keep ignoring them. I started noticing blood in my stool in my early 20s. I ignored it for a couple decades, pretty much. I haven’t ever been able to afford health insurance and I think I was kind of in denial. Also, I have had other more pressing health issues to worry about… among other life issues in general. I have had hearth dysrhythmias, joint pain and stiffness, weakness and fatigue… all that vague stuff that can’t be diagnosed but makes it really difficult to get stuff done. Also partial subluxation of one hip and one shoulder (I think the rotator cuff was injured during strenuous work in the yard –causes pain, mobility limitations, numbness and tingling).
Anyway, didn’t mean to write out my old lady list of ailments… just pointing out that even if I had health insurance, there were other things more pressing than the fact that I sometimes messed my pants while shopping in Walmart (the damn bathroom is a mile away from everything). Well, over the last few years, the mucous and blood have become more and more frequent to where it has altered my life until for about half a year now, most days, until late afternoon, I am running to the toilet every 10 minutes to avoid a mess. The signs and symptoms seem to change day to day, week to week, but that is the one consistent problem. I do not have diarrhea, and that is why I never considered IBD. In fact I recently started having problems with constipation since this past May. Before that I had a somewhat normal BM every morning –although they have become smaller and smaller, but still leaked blood and mucous frequently during the day, when I passed gas, along wi th tiny amounts of stool. (Such a FUN topic!) Over the last couple years the blood has become worse (often dripping in the toilet til the whole bowl is red, or passing large clots), and I started noticing inflammation type pain in the rectum.
When it became really bad this past Spring, I finally linked it to UC. I realized that it tends to flare up worst in Spring (when seasonal allergies appear) and remembered that my mother has a history of autoimmune symptoms (possible Lupus or fibromyalgia, definite rheumatoid arthritis from a young age). I realized that my eyes are blurry and mucous-y and that my joints ache worse, when my rectum is hurting and the blood and mucous is bad. Since about April, my stools have not been solid, even when I am very constipated. I will go ten days passing nothing except a Tbs or so of mucoid/liquid stool per day, along with the mucous/blood, until I get so miserable I drink a bottle of mag citrate and sit on the toilet for two days, passing semi-liquid stool. I am sorry this is all over the place and I am repeating myself. If anyone is actually able to get through this, you have my undying gratitude for your time and attention. BTW what seemed to be the major triggering factor this Spring was my taking of Echinacea for a cold I was getting. That is an herb that stimulates your immune system. So that also helped me link my symptoms to UC.
To top it all off, during one of my recent all-day mag citrate cleanouts, I realized that I now have a prolapsed rectum and uterus, as well as a rectocele (which was probably causing some of the constipation problem). So now, I run to the bathroom every 10 minutes, for the most part of each day, with cramps and feeling like I’m trying to pass a brick from my colon to my rectum, and sit there scared to relax because my rectum will slide out of my anus and my cervix will drop out of my vagina (oh come on, you talk about poop all the time, you can handle the female stuff). And all I get is a tiny bit of mucoid stool and or blood/mucous.
Another symptom I have, starting this year, is a feeling I cannot really describe, except to say that something in my abdomen feels “dead”. The closest thing I can relate it to is when I was very pregnant and having Braxton Hicks contractions and the uterus would be very tight and hard and it would cause kind of a queasy feeling.
As far as healthcare, I finally went to the free clinic this Spring. They ordered a barium enema which I was given a voucher for (the hospital donates a certain amount of procedures to the free clinic). The first time, the bowel prep did not work (because I had been backed up for a couple weeks), so the next time, I did the prep for two days, until I had green battery acid running through me, and I was passing out and had a migraine from low blood sugar. (This is how I discovered mag citrate). Also, I discovered when they did the x-ray that my sigmoid colon doesn’t head over to the left side from my rectum. It goes all the way to the right side and then folds back on itself and heads left. Apparently this is normal, but could explain how I could have colon pain in unusual areas.
But no matter how much I wanted to get it done, the BE was too painful for me to tolerate, and they couldn’t complete it. The doc at the free clinic said he would try to get a hospital sponsorship for a colonoscopy. I have been jumping through hoops and red tape for that until it finally fell through yesterday because I have too much money in the bank, which I have been diligently saving to pay the remainder of my college bill when I graduate. So do I spend that out of pocket for a $4K colonoscopy that probably isn’t going to fix anything? I can’t afford, and frankly don’t want to take, medication such as steroids or immunosuppressants. But maybe I have permanent damage or even cancer by now. I don’t know. That is a lot of money to me. I am also afraid of a colonoscopy, and now I’m even afraid of the prep. No one has done any kind of pelvic exam on me at all. I have a pap (which I haven’t had in over 10 years) scheduled in A ugust at the free clinic –they are that far booked. I guess they might notice something then.
Well, I have been looking at the Specific Carbohydrate Diet, since I started researching my problem this Spring. I want to try it, but I already have problems with low blood sugar unless I eat every couple hours, which is difficult since I don’t have an appetite, so I tend to snack on carbs (whole grain crackers/breads, peanut butter sandwiches, etc.) because they are convenient energy, and eat pasta type meals because they are cheap. I don’t have time to cook, and I can’t afford the kind of foods in the SCD. I hardly ever eat meat and ruin it any time I try to cook it. I don’t care for fruit, and veggies don’t seem to raise my blood sugar enough. I do take a lot of supplements, including B12 (which I discovered a long time ago makes a huge difference in my energy and metabolism), C, D, Turmeric, Boswellia, probiotics, etc.. I guess I am thinking, how can I ever plan menus, shop, and prepare for this diet, while feeding my kids also, and ha ving a life. I normally do not buy anything that isn’t on buy-one-get-one sale, and most days I feed my kids microwaveable frozen things because I am too preoccupied to figure out what to cook and how to cook it.
I realize that most of the people on here are probably young and otherwise healthy, and my problems seem relatively less significant for an older lady who should expect some health problems, anyway… but I am feeling especially sorry for myself, because I have already been through so much crap most of my life and I still have two young kids to raise and was really looking forward to finally getting on my feet and having a better life with them! Now I don’t even know how I will be able to work. There is no way I can spend 12 hr shifts on my feet, like this. Next month, I am achieving my long-time goal of graduating with my BSN, and I do not know what I am going to do. I can’t afford medical care. I can’t not work. I have already given up on being able to date and find another relationship, which breaks my heart because my kids want a dad so much. So all of this is really getting to me right now. I just feel overwhelmed and can’t even thin k straight about things anymore.
written by Amanda
submitted in the colitis venting area