I hope this thread is still going. I have some questions about colitis and IBD. My problems started 7-8 weeks ago. I was nauseas, gas, burping, cramping, diarhea during and after running and on days that I do not run. I finally went to my PCP 3 weeks ago after I woke up in the middle of the night several times sweating and with back pain. He took blood and thought it was my liver. Then next Sunday I was running a half marathon. At mile 2 the cramps came and an urgency to go to the bathroom. I found a McDonald's at mile 3 and I filled 3/4's of the toilet with blood and mucous. I kept running until mile 5 when this happened again. I walked from 6-10 miles and then got a ride back to the start. I went to urgent care and a colonoscopy was ordered. The colonoscopy revealed inflammation of the colon and an ulcer or an erosion (first told me ulcer, than an erosion). I had a normal ultrasound and a normal endoscopy (pathology results should be back next week). My diagnosis is non-specific colitis. I have been told not to run for the next 4 weeks and I am on colazol for the next 6 months. Any idea what non-specific colitis is?
Sounds like they don't know exactly what you have. I have ulcerative colitis for approx. 30 years. Your symptoms sound exactly like mine when I am having a flare. UC is little ulcers that are through the colon. I have been on Colozal for many years, but I am surprised they didn't give you something to clear up the d immediately. When I am having a flare as bad as yours sounds, I am forced to go on a round of Prednisone. Running does aggravate the situation, but maybe you can walk until they give you the go ahead to run.
Take care of it now and don't put off. Get a second opinion. Don't take any high caffine diet pills or too much caffenine also. This sounds like a sped up version of when I had ulcerative colitis but they couldn't tell if it was that or Chron's. It would get worse when I ran. Don't eat too much sugar and bread foods to irritate your colon. Mine would not clear up for a whole year it was like that!!! Finally they had to take out my WHOLE COLON!! That means I get to run with a 'poop bag' on the outside of my abdomen! This really makes me depressed and harder to exercise not knowing if it will melt off. I did finish a 1/2 Marathon last January with the bag on and no problems! I go on 40 mile bike rides with the bag staying on. There is life after this, but it would be nice to keep the colon!!!! Take care of it and get a second opinion form a specialist!!!
Is this the first time anything like this has happened to you? I think some diet pills and not eating the best weakened my colon to end up with this!
Wow. I'm impressed that both of you are still running. What commitment! This is the first time anything like this has happened to me. I was constipated a lot when I was younger. Nothing like this. I was initially frustrated with my diagnosis and then relieved. I don't want a dx of UC or Chron's. I haven't worked out in 2 weeks and I have been on the Colazol. I am feeling much better. I am staying away from fruit. That really seems to bother me. And then I had a half of a PB&J sandwich last week and it triggered it. On the Colazo I don't have diarhea. Just soft stools and the cramping, burping and gas when I eat something that triggers it. I have only been triggered 2 times in the last week. Is diagnosis solely based on the pathologists report and the colonoscopy? Everything looks fine except a small area of inflammation and the erosion/ulcer which caused the bleeding. My Dr. never did any type of verbal evaluation with me to get any type of history regarding when this started, symptoms, what helps, what doesn't. It appeared as though he wasn't interested in any of this and was only interested in the way my colon looked and the pathology report. If I had a thorough eval I think I would be more satisfied with my diagnosis - or lack of. Are your Dr's. concerned with your symptoms as well as what your colon looks like?
Thank you so much for getting back to me so quickly!
They can usually diagnose easily by the colonoscopy and pathology report, rather than get a structed background. They really don't know what causes UC. It can be inherited, brought on by stress or I think perhaps some sort of bacteria. Bad flares for me are brought on by stress, but my GI has had me on Prozac for many years also. To me, it really sounds like the beginning of UC. Do you know if the ulcer is in the lower part? Mine started there, then worked it's way up after many years. He originally started me on Rowasa enemas and prednisone, but your dr is probably seeing if the Colozal will calm it down first. That may be all you need. It's more or less a step by step process for the dr. I do hope you are seeing a gastro for this.
After countless doctors, Psychiatrist , and nutritionist appointments, I was diagnosed with IBS and reflux. Then the gastro tested for thyroid, and my TSH ended up being high. I went back in for a full thyroid panel, and while my tsh is high, my free t4 is high too. I go see a endo in July, but are anyone else's symptoms possibly caused by thyroid problems. Also, does anyone know what it means to have both TSH and free t4 be high? I looked it up and high tsh with low free t4 means hypo, while low tsh and high free t4 means hyper. It's not a lab error either, I got it done twice, same results. Thanks!
Shelley, I must say that I have been especially interested in your comments because I feel like I am reading about myself. I am just not as severe and chronic as you have been. Were you initially dx w/ UC when it was in your lower colon or did they wait to dx until it moved other places? Mine is in my sigmoid colon. I'm not really sure where that is, but it is in the lower colon.
LBJ - how long between your symptoms and dx? and between your dx and removal of your colon?
I ate something again last night that had me running for the bathroom with D and cramps all night. I also figured out why I thought I looked pregnant every once in a while. Last night I looked at least 4-5 months pregnant! I guess that is what everyone means when they say they are bloated! My fingers swell too. Does that happen to you? One minute I am happy with my dx and feeling lucky. When I don't feel well - like today - I am eager for more clarification about what is going on. Do you know of any preventative things I can be doing or anything not to do just in case this is the beginning of UC? Any feedback is much appreciated.
What about running. How do you do it? You are all amazing! I was training for a half ironman when this all started. I am going to have to back out of that and other races I had planned this summer b/c I will not be able to run for at least 5-6 weeks. Does running make the disease worse? It seems to make the symptoms worse but is there any evidence that the disease progresses more quickly with running?
Running Trotter - I have no clue about your labs.
Thank you all so much!!!!!
Payton-I can't run at all when I am having a flare. I tried countless times and many of those times I ended up coming home with poop running down my legs. I did figure out that capri running tights are the best thing to wear just in case it happens. I was dx immediately for the UC with just a sigmoidiscope to begin with many years ago. The gastro knew exactly what I had when he looked at the lower colon. I have had countless types of therapy for it. Fortunately, I have never been hospitalized with mine. There are many people out there that are 1,000 times worse than me. I haven't had a flare in a year or 2 (knock on wood.) When I can feel a flare coming (I know the feeling, it's totally different than a regular stomach ache or gas pain,) I up my colozal. I am supposed to be taking 9 per day, but I only take 3 when I'm not flaring. I normally start with blowing blood and mucus, no poop. That's when I know it's coming. I am about to have a major stress in my life, because my youngest just graduated and is moving to college in August, which also coincides with school beginning (I work at a school.) The beginning of the school year I normally start getting the feeling, so I take more Colozal at that time, and make sure I take my Prozac everyday.
If you do a search on the net, you will find quite a bit of info.
I only had 2 bouts with inderminant Ulcerative colitis. One brief time in 2001 remodling my house...stress....that healed up in a couple of months and I didn't need any meds anymore. Then major stress with helping my mom with brain cancer and her dying real fast. Then my crazy brother broke his leg and moved in...that was the last straw that seemed to trigger my Ulcerative colitis! It started in July 2005...4 stays in the hospital couldn't get it to go away! I was down to 85 lbs, taking Procrit iv's because of low hemoglobin! I tried Remicade injections, didn't help. All kinds of pills all day long. The suppositories also. So finally the doctor said he didn't want anyone dying on him and made me take out my colon...I tried everything to prevent this! I was devasated but it started hurting so much to go so much of the time, accidents driving around...I finally gave up for the operation in April 2006. WOW..that is not a long time to get soo so sick and down to meat and bones. All the muscle I had got eaten up with the predisone...NO muscle left...saggy skin. Couldn't run because to weak. I did feel great to get off all meds and be able to do things again. Went on a hot 35 mile bike ride in the country here in Texas! No worry about bathrooms... I still hate the bag but it saved my life. I take armour thyroid for the person with the thyroid question... my tsh was high and free t4 low... I don't think this caused it...STRESS did it for me and eating too many sweets and bread. Strong caffenine diet pills and drinks and eat away at your colon also! Good luck paytonpay!!!
Both of you are just amazing. I will continue to think of you and what you go through on a daily basis.
I am currently taking 9 Colazol a day. I feel like an old lady! Do either of you follow any particular diet? I saw a couple of books/diets mentioned earlier. Have you tried any of them? I love sweets. I used to only eat sweets - nothing else. I have been eating much better the last 5ish years, but I still love candy. And bread! I love my carbs. I switched to whole grain prior to my problems so I will try them again. It seems as though what bothers one person helps another - is that true?
Payton, my GI always told me to just not eat what hurts. I have always followed that, although I have been on WW for years. I do love my hard candy also.
There is a great community that deals with UC and Crohn's-www.ibdsucks.com
Christa, this could be caused by many different conditions, some minor and some quite serious. I'm speaking as a life-long Crohn's Disease patient who has seen many friends and relatives go undiagnosed or misdiagnosed. Please make sure you are seen by a gastroenterologist and do go through the complete work-up: physical exam, history, blood work (including tests for celiac disease), and a colonoscopy. Yeah, I know, endoscopies are yucky...but I promise you that the alternatives, in terms of untreated conditions that can only be diagnosed by a biopsy done during the scope, are far worse.
Has anyone heard about the recent reports regarding colon/bowel problems and use of accutane. There's a big law suit involving accutane users who are now suffering from ulcerative colitis, irritable bowel syndrome, etc. It may be a coincidence but, my problems bega n about 17 years ago which is also the same time I began taking acccutane (for the first time). I'm no sure the two are connected but it's one more thing to consider.
This is my first time here. Yesterday, I ran my first half-marathon. I've been training for a long time and had run 12 miles without a problem. Yesterday was very hot and humid. The course had lots of hills as well. I did well until I hit mile 10. I got a bit dizzy and need to walk a little. When I tried to run again, I had terrible stomach pain/cramps. I even looked for somewhere to stop, but ended up running (slowly) and finishing. Afterwards, I had several bouts of diarrhea and then red jelly like discharge. It has to be exercise and heat related. Any thoughts?
Shelly and anyone else taking Colazal - I saw my PCP last week and he has IBD. He took Colazal for 2 years before becoming aware that his kidneys were failing from being on the meds. He said that most docs do not monitor your kidneys close enough when people are on Colazal. Even being a doctor, he did not monitor this for himself. Your kidneys should be checked routinely. He checked mine last week and said he would check again in another 3 months. It is a simple blood test that can catch this early. It is rare, yet important to monitor.
I spoke with the IBD coordinator today and she told me that when a colon has inflammation and an ulcer, it is almost always IBD. She has only seen two people other than me who have this without pathology reports saying it is IBD. She did say it may be the early stages of UC, but I am hoping that it will just go away!