In Someway a Reaction to All the Stress

Introduction:

I actually have ulcerative proctitis which is very similar to colitis except that it only affects about 12 cm of my colon. I was diagnosed in 2009 during a time when I was under tremendous stress from divorce, bankruptcy, in between jobs. The list goes on and on so my assumption is that this disease was in someway a reaction to all the stress. I started with mild symptoms and the doctors had a good outlook for me. This year has not gone so well. I had a sigmoidoscopy that I failed miserably and have since been informed that my proctitis is very severe. I have completely changed medications (again).

Some more about me:

I am a 38 year old single mom who currently lives in Annapolis Md with my son. I get embarrassed and have trouble describing my illness because I want to be independent and not seem so fragile and needy. Then again the symptoms I’m experiencing make me feel gross and unappealing. Although I have dumped an earful of too much information on my boyfriend and he has not ran away yet, lol. I like to read when I have time. In the cooler weather I enjoy hiking.

Symptoms:

Bleeding with bowel movements. Going from constipation to bloody diarrhea depending on the day. Some urgency but I am still able to make it to the bathroom on time. Not as much gas since meds have changed. Some low energy and depression when I go thru a bad flare. I have never experienced remission in these 4 years I have had this.

In Someway a Reaction to All the Stress

I had always considered myself healthy until I had UC. I have tried very hard to keep this from changing my life, but it has been hard. I don’t want to be the person to mess up other peoples plans and I don’t want to miss out either. I’ve noticed alcohol aggravates my symptoms but haven’t completely given it up. I’m not much of a drinker anyway and like to have a glass of wine a few times a month. I am not embarrassed with the doctor checking my butt. I am probably more embarrassed trying to explain my illness to other people that don’t understand it. My family and boyfriend are very kind and supportive of me. I don’t think they know how to help me, but them being there to listen is comforting to me.

I am most concerned about keeping up with my 7 year old son. I do not want to drag him down with my low energy or not being able to be as active on some days. I worry that if I do not get my health under control that I could end up in the hospital at some point. I am too young to feel this old :(

Are there any medications, diet, etc that are helpful to people? Please share with me some of the positive outcomes so that I don’t get so gloomy. How can we help each other deal with the depression when having a bad day? Some day when I am old and grey I hope to look back on this and laugh. I want to have a positive attitude because life is not only full of problems but also blessings. We can’t forget the good parts right?

Medications:

I haven’t found the magic formula for myself yet. I know everyone is different.
My doctor has just switched all my medications. I am taking hydrocortizone rectal suspensions twice a day and 200 mg of Imuran.
It seems to help but still waiting for remission or at least the blood to go away. Does that happen or am I being unrealistic?

written by Maria

submitted in the colitis venting area









11 Responses to In Someway a Reaction to All the Stress

  1. Sharon July 26, 2013 at 6:33 pm #

    Maria, as a mom, I totally understand the frustration of feeling like your kids are also having to deal with your disease. All 4 of my kids know I have UC (ages 15, 13, 9, and 7). When they are young, I may generally say that I have problems with my tummy that can make me sick and have to go potty a lot. As they get older, I give them more information. My older 2 now know a lot of information about the way medicines affect me, what I have, what that means, etc. I feel very strongly that children are more scared of not knowing what is going on than they are of what is explained in an age appropriate manner. My kids have become more empathetic, more accepting of people with diseases of any kind, step up when I need them to, and much more aware of how my faith affects my daily life.

    I could give you lots of info on supplements and diets but I’m counting on my buddies Bev and Shelley and Ana and others to jump in. I just wanted to encourage you that your son will be fine. When I am flaring, my kids may watch a lot more TV, eat more frozen dinners, my laundry gets backed up and my house is a mess. We read together, play board games, or cuddle. I call on friends to do the play dates (I take my turns later). When I am well, we do all the other stuff. It gets better. I promise.

  2. Joan H
    Hope July 27, 2013 at 12:16 pm #

    Hi Maria – Welcome to this site! I have had ulcerative colitis for years – symptoms from the time I was a little kid, then worsening over my twenties especially, then after my brother died of colon cancer after he battled crohn’s for 20 years, I finally had a colonoscopy and was diagnosed…and the treatments began :) I have had episodes of proctitis where the bleeding, pain, urgency and all that is disabling about the illness ran my entire life. In fact, my last “flare” lasted two years! I say that jokingly, because can a”flare” really last that long? I thought “flare” meant something that came and went quickly!
    I want to encourage you to check this site every day, gather ideas, try some things out and gather the hope and advice offered. I can actually say, after two years of being in pain so badly that I could barely get to work, and once I was at work could barely get through the day with pain, bleeding that didn’t want to stop, come home and go to bed with a hot water bottle wishing it would go away and wondering why I got this so bad when I really was probably the most health oriented of my family growing up, being on tons of different meds, enemas, suppositories, etc and watching my 4 kids (I can relate to Sharon!) see me like this all the time – I can tell you that as of the last 4 weeks or so, with one little glitch when I tried to advance my diet too fast – I have become a PERSON again! So yes, it IS possible! Hang in there! This flare will pass, and now you have lots of help and ideas to check out to get through it by being on this site! I had researched and done everything I knew how to do, and nothing was helping it get better – just maintained or got worse. There is nothing like tha very concentrated proctitis pain, either. It’s horrible. Can’t sit, can’t stand, can’t lie down, can’t get away from it. But what I did was put myself just on rice (I know, I sound like a broken record to those of you that have been listening this month to me :) ), then after I tolerated that, and once the diarrhea, pain and bleeding decreased, I added bits of chicken. Once I was okay with the chicken (waited two weeks on just rice, chicken and water lunch and dinner – half a cup rice and less than a quarter cup chicken) then tried addinfg blueberries for the antioxidant effect – again, less than 1/4 cup. I decided to treat my gut the way you treat a baby’s gut — you introduce ONE food at a time, see how that goes. If they tolerate it, you move on to the next food for a week. If they tolerate it, add one more new food. If they don’t tolerate that you take that particular food out of their diet (for now at least), continue with the first two that actually did go okay for them and a week later try just one more. One at a a time. And guess what? It’s working! Yesterday I added less than a quarter cup plain cooked ground beef as I want to get some protein in my diet for healing, and so far, so good. I also added probiotics – I use Renew Life Adult Flora 15 Billion , one tab a day – and I saw an immediate difference in symptoms improving. My theory is that I had to simplify my diet GREATLY, “baby” myself a bit (just like I used to add things into my kid’s diets), and then re-populate my gut flora/microbes as I went along. I also after the third week or so, added Vitamin B complex and Vitamin D and Calcium (as I had developed severe osteoporosis at age 38 – I didn’t know it was from malabsorption from Ulcerative Colitis – talk about total denial there!) I am still taking Lialda 1.2 GM tabs – 2 in the morning, 2 in the evening and Canasa Suppositories 1000 mg once at bedtime rectally, nexium in the a.m. I’ve had to take an occasional immodium on a particular day when the diarrhea started up a little and i needed to finish work, but that was during the blueberry experiment :) The depression, I learned from my GI doc, is common because 90% of your seritonin receptors (the cell receptors that help regulate chemicals that DECREASE depression) are IN YOUR GUT! Not in your brain! So, guess what? If you can get your gut to heal slowly, you will also see a decraease in depression symptoms. I have found this to be true – I feel better most days now, I was so depressed before, feeling so trapped by this disease :( If you have gotten isolated because of the symptoms, which did happen to me – I didn’t want to tell most people “No, I can’t come over now for a play date” or anything else, for that matter “I’m having bloody diarrhea” – like how many people can you really say that to??? So I started to get isolated. I started reading on this site, and also got Adam’s book set, and that made a big difference to me mentally too. I felt like I could start to tell people who I cared about and wanted to keep contact with the truth of why I’d been so removed from everything social. Some people didn’t get it – most were very sympathetic, and I even found a few people who also had ulcerative colitis and hadn’t really talked with anyone about it, so that was a real bonus. Sharon’s advice on kids has been great for me too – I really appreciate that Sharon! Right away, she “knew” when I needed to have help/support with how to deal with this with kids—she gave valuable insight on that, and I am so thankful. My kids are understanding what’s going on, and we’re working through it day by day. Oh, and I also cut any alcohol (I’m like you, maybe one drink once or twice in a month – why bother?) and caffeine, wheat, milk and dairy. Hang in there – you’ll get through this, and keep us up to date! You’re gonna make it! – Hope

    • shelly in maine July 28, 2013 at 7:45 am #

      Hope,
      Congrats on the ground beef…see, already “chewed” to help you break it down. That may be the secret to the fruits and veges…cooked AND blended like real homemade baby food!
      Oh, just fyi, sometimes I could eat something 1 day and not necessarily another or especially 2 days in a row.
      :-) Shelly

      • Joan H
        Hope July 28, 2013 at 8:01 am #

        Thanks for that Shelly – I’ll see about cooked and bleneded fruits and vegetables – wow, that would be a big step for me :) Seriously, I haven’t had any of that for probably more than 5 years I’ve had sucj problems with it. And I did notice that ground beef day wasn’t as easy going as the first day, so today I will wait As you said “patientce is the ultimate virtue in all this” ! Thanks Shelly!

  3. Sharon July 28, 2013 at 4:09 am #

    Hope, your awesome. Like Bev, you need to repeat yourself because people can’t possibly read every comment on every thread. It would be cool if there was some kind of profile page where someone can say “Read Bev’s regime under her profile” and other’s words of wisdom could be summed up for new readers. If you already know about EVOO, you could look for that but if not, you would see it on Graham’s profile, etc. Anyway, Maria hang in there. We are all rooting for you.

    Sharon

    • Joan H
      Hope July 28, 2013 at 5:24 am #

      Hey Sharon! Yes, Extra Virgin Olive Oil – I forgot! Took your advice and Bev’s and Shelly’s, and others who have tried it. I’ve been adding that to my chicken as an extra for the healing properties, Olive oil in rice instead of butter too. I found it really does help. And it’s heart healthy too. Who needs mayonnaise? :) Thanks for all your help and encouragement, Sharon. Yeah, it would be interesting to see what everyone does to start out and the way they change their diets, what works for them, etc. And it would be something to look at for new – and not so new people – to be able to try things out and see what works for them. We are all so unique.
      Keep hanging on, Maria – keep us posted – you’ll get there! – Hope

  4. UC Family Boy
    UC family boy July 28, 2013 at 5:24 am #

    This might sound like a silly thing but it is backed up with facts I came across.
    So I been reading about the good foods (prebiotic) and the foods that can make you tired, larthagic and moody…(junk food).
    When we eat good foods that product short chain fatty aids, that them chemicals are absorbed by the colon cells and the nerves that wrap the immune system and connect up to the brain, sends smoothing messages and chances our mood, emotion to a calm state. It works because than the brain doesn’t need to release any cortisol into the colon which in itself puts the colon state under stress of its own.
    I hope this little info helps.
    Taz

    • Joan H
      Hope July 28, 2013 at 5:30 am #

      Wow! What a good point! Thanks UC family boy! True – anything the body sees as an “invader” or not natural to the body would be considered an invader or pathogen or problem to be kicked out of the system, stress would rise and cortisol would be released. Amazing – thanks for posting this. It really makes sense scientifically, and that goes for short chain fatty acids, and also allergens and other things that a person’s body might react to as part of their autoimmune response – for me that includes, peanuts, tree nuts (almonds, walnuts, etc), apples, bananas, kiwi, eggplant, wheat, milk…that makes sense. Wow – we really do have a complex, amazing system. Thanks for posting this info.

  5. shelly in maine July 28, 2013 at 7:41 am #

    Hi Maria
    Just a few things to add to the weath of info…stay positive and focus forward. Baby steps inUC as patience is one of the ultimate virtues with this whole mess. Sense of humor is key.
    Keep a journal of everything from foods to BM’s. Like Hope said, try and only add 1 thing a t a time. Look at SCD and there is a site called – pecanbread/stages plus all the SCD info. It is a very slow process. Some people are intolerant to foods they don’t even know like dairy and eggs and gluten so watch that stuff. DIET DOES MATTER…the Dr.’s won’t really tell you that because they are medicine based, but that’s how they are taught. So stay away from processed foods and yes alcohol, at least for now.
    UC is very individual, but probiotics are key, anti-inflammatories like fish oil and some others things people on here mention.
    Hang in there, Shelly

  6. dowdar August 1, 2013 at 3:52 pm #

    i have been diagnosed ulcerative proctities around two and half years ago,and these days i have been bloating and feeling pain in the abdomen,can this be colon cancer or some thing dangerous in this short time,please help
    including that my stool has no any gross blood and i dont have diarrhea,my stool is very hard that it can not pass throught the anu,is this mean i am constipating or what .

    • Pauli August 2, 2013 at 9:54 am #

      You’re probably just experiencing a flare. The longer you have ulcerative proctitis the more like fullblown uc your symptoms (when flaring) become. The constipation, bloating, hard stools, maybe headaches or swollen ankles, feeling listless and achy are all part and parcel of the whole darn package. I get great relief from following the SCD diet, but even then sometimes things go awry and I’m feeling like you are now or worse. When that happens I make a big batch of chicken soup and eat just that for a couple of days and drink lots of tea and then little by little add in well cooked vegetables and fruits and maybe some chicken or a plain hamburger pattie (no bun). I stay away from all dairy when I’m flaring and eventually things come back into balance. I’ve found that Sulfazine, an old tried and true drug with few side effects if you are not allergic to sulfa works best for me. I had to insist that my doctor prescribe it for me. No one likes to prescribe it anymore (my guess is because the M.D.s don’t get any kickbacks from it like they do with the new meds.)

      I also drink a full glass of water on the warmish side every morning as soon as I get up. I find it helps with the constipation. I also take a probiotic and tumeric capsule every day and occasionally, fish oil caps.

      Keep a food journal and note all symptoms too. Eliminate things for a while that you notice you eat a lot of or on a regular basis. Eventually you will figure out your triggers are and learn to stay away from them. Hang in there! You can find your way back to health. No one knows your body better than you, but you have to pay attention to what it is telling you.

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No matter what, colitis flares don't last forever, don't forget it:)