Introduction:
I am a 28 year old female from Ohio that was just diagnosed with UC April 2012. I am currently in the process of finding a better GI doc.
Symptoms:
My symptoms I currently have are but not limited to…… abdominal cramps, abdominal area feels like it has its own heartbeat, bloody stools, exhausted, burning pain in base of neck & shoulders, back pain, headaches, nausea, jumps in B/P.
My Story:
My experience with being diagnosed with UC is a challenge all in its own plus the symptoms of the disease. I am a 28 yr old college student and bartender. The day I was diagnosed…… I had been experiencing back and neck pain and thought I may of slept wrong. I went to work that night and got some stomach pain which I thought were period cramps. As the night went on, the pain in my stomach grew more intense and as that did back pain came with it. The stomach pain got so painful I was in sweats, pale, calmy to touch, and thought a BM would help resolve the issue. I had 4 BM’s and nothing changed. I came home and had another BM that wasn’t really a BM at all because it was nothing but pure bright red blood. That took me to the ER. At the ER I was given heprin shots in the stomach, blood work, SB capsule endoscopy, colonoscopy and ultrasound. Then I was told that I have UC…… if that news didn’t shake me a bit then the reason for why I h ad it really upset me. The doctor I was given told me that this was all caused by my binge drinking! I do not drink on a weekly basis or even a monthly one at that. I guess he assumed that was the cause because I am young, college student & a bartender. I was so pissed after I kept explaining these facts to him but no matter what I said his response, “if it came from a grain or a grape, you should leave it alone”. My mom has UC, and there is abdominal cancer that runs in the family and the best thing this so called doctor could come up with is that it was from alcohol. Even against my better judgement I went to see this “so called doc” for my follow up 2 weeks after getting out of hospital. It was fact that I had the ulcers from the colonoscopy, he said SM capsule looked good for most but there was inflammation where small bowel goes into the large & it was also caused by alcohol. I asked, should I change my diet? his response was not to eat yellow cheeses and to quit drinking.
WHAT????
I dont think I have ever experienced
someone in the medical profession
that is that insensitive to another person.
I have an appointment next week to meet with another GI doc and I pray to god that they are not bias like the last. Since getting out of the hospital I have had flare ups 2-3 times a week from dealing with the stress from this bias doctor as well as life in general. I am tired all the time, at times cant get comfortable in any position from the joint pains, feel I spend half my life in the bathroom now, and cant help from crying some days from the pain.
I am most concerned about trying to get the flare ups a little more under control. My resting heart rate and blood pressure spikes during a flare up (HR-121, B/P 140/95) which is a weird feeling since I feel wired & so tired at the same time. The medications I currently take are sulfazine and bentyl. As of today I also got med’s for anxiety to help with the stress.
How can I get these flare ups under control??
What are some things to do to help with the joint pains?
Where I’d Like to be in 1 Year:
In a year I would like to have the flare ups semi undercontrol, might be wishful thinking but to once a month. I would also like to get the joint pain down to were I can still at least function. I am half way through my program to be a respiratory therapist and don’t want to give up my dream because I couldn’t find a happy medium with the disease.
Colitis Medications:
Since I was diagnosed last month I have been taking Sulfazine and bentyl. I don’t think that these medications do alot for me since I have flare ups 2-3 times a week.
written by Jessica
submitted in the Colitis Venting Area
I am a 28 year old female from Ohio that was just diagnosed with UC April 2012. I am currently in the process of finding a better GI doc.
Hey Jessica,
Thanks for sharing your story. I’m way sorry that your doc did not have much useful information for you right after your diagnosis. I think there are now over 1000 stories on this site from people like myself and you with UC, and you are the fist one I can remember who was told “binge drinking” was the reason… If you ever have the chance to run into that doc again, it would be great if he/she could back it up with some more info on just why/how “binge drinking” plays a part, and if there are any studies about that…
Anyways, that’s all not so much the point. We got to get you feeling better so you can help all the people who need a Great Respiratory Therapist out in OHIO!.
When I was in the middle of my early post diagnosis days (I call it Diagnosis Dementia) times were super coo kooo, and I was getting ideas and thoughts from just about everyone on what to do.
If you’ve already read my story, you know that I’m a firm believer that diet modifications can help out a huge amount of UC’ers who are struggling with symptoms and not happy with results from wesetern medication approaches or want to supplement their western med approach. And in a nutshell, my diet changes have allowed me to celebrate another memorial day weekend medication free (of course I’m not binge drinking or anything, but there’s a couple other ways of partying that have worked for me and my colon like as well:)
So what the frick’s up with the joint pain right??? Yeah, that sucks a big fattty for sure. I remember wanting to just tell a doctor, “Hey Doc, I’ll take the colon problems, the bleeding etc…, but please please get rid of the horrible joint pains..”
Maybe you feel that way too, and if so, I can relate, but by and large, once your UC symptoms get more under control, the joint pains should get much better too. That has how it has gone down for me. From a medicatoin perspective, I think its safe to say that many of the UC’ers who have used sulfasalazine to treat their UC have also reported Joint pain problems easing or going away. And that medication has been used for quite some time by Rhuematologist docs for similar symptoms. Talk to a good GI and Immunologist/Rheumatologist about that stuff if you want to investigate further.
So how can you get the flare ups under control..
1) As you probably know, the overwhelming majority of people start out with trying different medications to control the symptoms, and some people find a med that works for them right away, others use multiple medications to get their fix, and others end up not using mediacitons… that’s the western medication approach
2) Other people use “alternative” medicine ideas, my girl Alice from Canada who did an interview with me way back a few months ago uses Ayurvedic medicine (based off Indian medicine) and has had some awesome success
3) Some people opt to have surgery (but usually not until they have exhausted all other types of treatment ideas and possibiilities, or if the symptoms are so horrible that colon rupture is looking like a possibility etc…) and for the most part or about 85% according to a recent survey on the site, these people are SUPER happy with their decisions
4) And for some others like ME, I use diet and the principles of the SCD diet and some other simple thinking to control the disease. I go into a crapload of details of all this in the book I’ve written along with the cookbook (Feeling Crappy to Feeling Happy) but to make diet changes you should ask yourself if you can handle cutting out bread, and starch from your diet. There’s other stuff I don’t eat anymore at all, but if you can’t live without bread, and you tried cutting that out completley before, and failed, then diet changes might not work etc… IT’s NOT for everybody, and going at it 95% is usually not good enough for optimal results. So yeah, its hard, but its worked wonders for me. And my joint pains have pretty much resolved, which is obviously awesome. Actually, I’m heading in to get a colonoscopy hopefully within the next two months and I’m super exiceted to see what he/she sees. Its been almost 4 years since my original scope job.
Enough of my ramble,
HANG IN THERE, no matter what you do, you’ll get past this UC and get on with your dreams. Everybody can. UC is nothing but a punk ass gang-banger talking loud in the back of the bus for no reason. You’ll kick its butt too!
best of luck,
Adam
@Adam thank you so much for all the information. I have been in what I call “trial & error” of my diet….. Its not going so good, because seems like everything I eat has some affect. I am learning what foods make me flare and just some of the other ones makes my stomach sound like there is a small child in there banging & yelling to get out. I am time limited with my free time because of school, work and clinicals, some weeks I get time for cooking for the week and others not much time at all. Thank you also for that good laugh from the last lines of your post! I really needed that =)
@Amy- I’m glad Im not alone with the issue of having a idiot doc that believes that since our job is bartending….. we only work there to be with booze. It’s a sad fact to know there are other docs out there that think that way. But I’m happy to hear things are going well for you since you changed doc’s. THERE IS HOPE!!! =)
@Phyllis, I went to see my family doc about the stress and anxiety that I have been dealing with. The meds he put me on have seem to be working well, there is still some pains at times, but nothing close to what it was. I know I need to work on my diet though. I have already dropped 12 lbs in a little over a month (& I wasn’t trying to loose weight). Guess I am just a work in progress right now. One thing at a time right?
@Jennifer- I am not aware that they did those tests on me. I think the doc I had just looked for things that alcohol may of caused and nothing more since that is what he told me caused this in the first place. My family history isnt a walk in the park with things like heart disease, strokes, cancer, UC, IBS, pancreas cancer & the list goes on and on. I will keep you updated on what new test I do when I see my new GI doc this week. I just want to make sure nothing else is sending me in to flares.
Hi Jessica!
I was diagnosed at the age of 19 but my most severe symptoms began around the age of 30. Like you, I tended bar and like you, I had an ignorant doctor who believed that tending bar somehow equaled being an alcoholic. Strange. The best thing I did was switch doctors.
After several changes in pills, several rounds of steroids (blech!!), rowasa, and over a year on Remicade, Im hoping that my next doctors visit and colonoscopy will show that I no longer need remicade and I can just survive on asacol alone. I’ve drastically changed my diet to the Paleo lifestyle, which has helped tremendously with my joint aches. Even though my previous doctor claimed that diet has no affect on my severe uc, I took matters into my own hands and believe he was wrong.
All the best to you, Jessica!
Jessica, I was diagnosed in 2005. My Gastro doctor just said “eat no red meat, no dairy, and no alcohol”. Well, i went out and bought a boo titled “The new eating right for a bad gut” by james Scala. PH.D. I have fought many battles with this over the years, but I find if I follow the advice in the book I can stay in remission. When I cheat, I have severe pain and it is not worth it. At one point, my doctor looked at me and said “I don’t know what else to do except take out your colon”. I said “no” and walked out of his office. I take five asacols daily, 3 in the morning and 2 in the afternoon. At one point I was on 12 a day and still bleeding. I personally think it is kept in check by diet and keeping your stress level under control.
I receive nothing by recommending this book; only hope it will help you. Best Wishes, Phyllis
@Phyllis Bovaird
I read this book. Do you also buy all of those supplements?
Hi,
I think the doctor’s ‘findings’ are a little humorous if we think about it. If it was caused by binge drinking or alcohol consumption, wouldn’t there be millions more who have it? In particular college students would really be in a bad way wouldn’t they. I hope your new doctor works out better. When my disease symptoms first appeared my then NLP thought it could be celiac and I removed all gluten from my diet for 3 weeks. Of course that had zero effect on my symptoms. It also didn’t really match my symptoms but that person wasn’t so terrific at their job so I change docs. There are different avenues that work for different people so medicines may work well for some and not others. It all just depends. I hope you find health and healing soon.
Did the doc test you for celiac? Did you get your D levels tested? Try going off gluten and taking vitamin D supplements… both are linked to joint pain, and they’re also often linked to UC. I’m waiting to get my official diagnosis but 99% sure I have UC… I’ve suddenly developed gluten symptoms (gluten makes my UC symptoms worse, I feel so much better after cutting it out) and my D levels were really low causing all kinds of other side effects like fatigue, muscle weakness, mood swings. While I didn’t have joint pain, I definitely came across plenty of references to it while I was doing my research on these two topics. And definitely find a new doc… that guy shouldn’t be practicing! Hope you find something that works for you.
I think he might have meant don’t eat yellow snow?
LO…PeterNZ!!
Cheers to that…
Bev:)
UPDATE: Just went and seen the new GI doc today. I told him that my meds didnt seem to help much and he said that the Sulfazine is an alternative med to others preferred but is less costly so that is probably why I was put on that. Guess Im joining the group of being on Prednisone. I am concerned about taking it though, since being on steroids for long periods of time will lower the immune system. How has anyone else who has taken it, experiences been with it? weight gain? alot of infections? excessive tiredness? ….. cause the side effect paper that came with the meds is two pages and doesnt include everything. So just wondering the most common causes people have had?
So with the new med added, I’ll be taking 17 pills a day!
Still overwhelmed with all the new changes in my life as well as the ones I will have to make in order to get back to being me before all this.
I have a follow up with GI doc in 3 months to see how this whole steroid experience works out with me.
BTW- My new GI doc asked why I came in since the biospy already confirmed UC. I told him the ridiculous story of what the other “so called doc” said about alcohol/binge drinking was the cause of the UC. He looked at me, closing his eyes and shaking his head no and said ” Alcohol doesnt cause UC, it can cause it to flare but it is not why it develops”. THANK YOU DR. DEY!!!!! Im glad he was awake in lecture that covered that part!
Hi Jessica,
I was diagnosed in April 2012 and also been taking steroids.
At that point in time I would had gave anything ago.
I felt 100 percent better. I started off taking 6 a day for 1 week and reducing how many I took on a
Weekly basis.
I have taken my final steroid today and from tomorrow it will be crunch time.
I will see if I can go without…!!
I have also been prescribed with pentasa, I take two a day and so far so good.
How are you getting on??
Hey kerrie,
I was put on 40mg of prednisone as of may 31,2012…. then to taper every 2 weeks. After 9 days of the 40mg I had almost every single severe side effect of prednisone and ended up in ER thinking i was having a heart attack. It wasnt my heart, just the side effects of the steroids. I got to taper to 30mg but had a flare from the big drop, but the side effects werent as bad and belly finally adjusted. I just today got to taper to 25mg of prednisone.
With all that going on, my fam doc put me on low dose xanax 0.25mg to help with the anxiety…. but wanted me off of that, so we tried cymbalta…. that made everything worse! Im not depressed, but was put on a antidepressant…. that supposely had antiinflammatory & anxiety effects , after 5 days of that I thought I was going crazy and had a bp of 158/98. So stopped that, so he wanted to try celexa….. I very strongly told him that I didnt do well with the first antidepressant, why try its “sister’?
I tried to give it the benefit of doubt…. after 4 days of celexa, same thing happened but was worse than the cymbalta….. celexa had me feeling crazy, my by was 170/105, and all the other severe side effects to the celexa. It has been an up hill battle with dealing with the meds, and trying to find something to help with the anxiety.
Love ya’ lady! You are strong and will get through anything!
thank you lisa! I have been steroid free 3 weeks, I got off them 9-20-12. =)