Over 150 Pictures of People with Colitis – And Advice

Below are all the pictures of the UC’ers who submitted their pic for the August 2014 Survey/Q&A.  You can click on any image to view the enlarged pictures if you like.  (Thanks to everyone for sending in your pictures, super way cool of you, and always great to see your faces!)

And, even though pictures are amazing, especially if you’ve never seen someone else with UC before, BE SURE TO read the advice that others posted for you to read.  All that is listed below the pictures on this page:)

Thanks again for being part of the site and the site’s newsletter group.  I’m sure you’ve already realized it, but if not…COLITIS PEOPLE ROCK!!

– Adam Scheuer

Additional Comments Included for question #10

1. You can have mild Ulcerative colitis but if the inflamation is uncontrolled it can get severe. Another thing ulcerative colitis itself has nothing to do with hair loss its the result of the medication to treat it. Heck yeah you can eat late at night if you wanna wake up early for a poop call.
2. For me, when I come out of flare (which can be bad for the first month and then stabilizes somewhat but lingers for a few months to 1.5 years), I loose weight (15-20 lbs). It seems like it can take four months to a year before I seem to go back to what would appear to be normal metabolism for my weight. this takes some getting used to, as I am accustomed to eating whatever and not having weight issues.  When I was really sick with pancolitis (colitis throughout my entire colon) back in 2008, my hair did fall out some. I was using hot rollers to hide the fact that my hair seemed thin. I also didn’t have any monthly menstrual cycles for a year, but my doctor. figured that was because of the health crisis. It’s been six years now and I have been on the SCD diet for most of that time and both are back to normal.  Generally when in a flare, if I eat past 6 PM I tend to have to get up more frequently through the evening. I typically go to best at 10 or 11 PM. It also matters what I eat. If I am famished, I typically will have some plain protein like a burger patty or hard aged cheese. I stay away from anything fibrous (vegetables) or anything that can have a laxative type effect if eaten in larger quantities (such as fruit) – with everything slowing down as we move into sleep time, with a flare, my body has always been way more sensitive in digestion.
3. Do stress release activities daily (I.e) yoga, play w/pets, watch a comedy) to help from getting flares as stress is a HUGE FACTOR.
4. Take it all one day at a time & seek support when you need it! Don’t be afraid to call your doctor if you are concerned about symptoms.
5. Some of them need an asterisk… For instance, you might be able to go to remicade after switching to Humira, but chances are greater for an allergic reaction, so the general theory is that no, if you stop treatment you might not be able to restart the same one again in the future successfully.
6. Follow SCD and Paleo and life will be much better with UC. Also look into Triphala, works great for me.
7. Please keep surgery as only a final option.
8. Ulcerative colitis is a really evil little buggar of a disease that can affect you physically and mentally. You have to be strong to get back up after every relapse. We all need a medal and a big fat wad of cash to buy ourselves an adequate consolation prize. Good luck to everyone out there who is touched by IBD. I swear by homemade yogurt and pampers pull-ups (XL) for journeys. Xxxxx
9. Stay positive
10. exercise is helpful it is rather difficult during a flare up however I find keeping active helps no matter how little. I have been told that smoking a few cigarettes every day can reduce flare ups and I wonder if anyone else has been given this information, or if anyone has tried this. I am a non smoker however I would be prepared to give it a try when I am at my worst.
11. I suffer from several autoimmune disorders, including Crohn’s and UC. I slowly deteriorated after my diagnosis because I did not take good care of myself until I had lost 25 pounds and was very anemic. I ended up in the hospital and on prednisone for several months. Now I take very good care of myself. I gained the weight back and am no longer anemic. It has been a year since the hospital and 10 months with no prednisone and I am doing great. A lot of it is about taking care of yourself and understanding as much as you can about what you can and cannot tolerate. Sleep, hydration, good diet, exercise, and taking medications that work for you help a lot. Personally, I take asacol, prilosec, a multi-vitamin, and vitamin D. I avoid saturated fat, insoluble fiber (unless its been very well cooked), lactose, caffeine, and certain types of alcohol (especially beer, distilled spirits seem ok). This has worked great. I have not taken immunomodulators like Remicade or Humira but I know they work wonders for some people. My sister has UC as well and had her colon removed and she has a J pouch and life is much better for her. She leads a very normal life.
12. SCD REALY HELP ME
13. Used diet instead of HUMIRA and am so happy to be in remission for 6 months!!!
14. I’ve taken every form of western medicine available for UC, had issues with them all, went through a total colon-removal and now I am living a normal life with an illestomy. Please feel free to reach out to me at anytime for advice, questions, concerns, etc.UC is a very manageable disease, nothing to worry about.  List things that trigger the flare ups, AVOID them. Have a healthy diet (i.e. small meals 5-6 times a day with vegetables and fruits, and one full spoon of honey with water in the morning first thing) Keep your colon as clean as possible Light sports ; walking, biking and swimming.  Do the regular checkups and STAY AWAY FROM STEROIDS  P.S.: Please note that all information above is my personal experience for managing my UC, i am not a doctor :))  Enjoy life and poop as much as you can , huhhhhh
15. Avoid time stressed situations, like running late to work or for the bus, that’s kind of stuff trigger my bowel. So I make sure I’m always 10-15 minutes ahead. Also as student I try to finish my papers not at the last minute like I used to do before but like until the middle of the time frame they gave us.
16. Always ensure you have a doctor/specialist that you are comfortable with and that you feel listens to you. If you are not happy change. From experience the right Doctors sure helps through the dark times..
17. Alot of weight gained during or after flare up.dont worry at all,it will be reduce slowly when your colon going to be healthy.
18. Remicade and Humira sound like US brand names. What actual drugs are we talking about?Why would you want Remicade infusions any time of the day? Go on the SCD. Far less harmful and Hello, it heals you. The drugs can make your hair fall out and maybe the stress of having colitis, but not the actual colitis itself. If you can still eat, you can still poop.  You can eat late at night but only if you don’t have to go to work the next day because your guts will be in turmoil for a few hours into the night and you will be too tired to eat from getting up every 20 mins to go to the toilet. May God abundantly bless you and heal you, in Jesus name, Amen. Chin up.
19. Q4 Doctors told me that I could not go back to remicade because I had created antibodies to it.  Q8 I don’t think colitis causes your hair to fall out , but that doesn’t mean it won’t fall out naturally :-)
20. Stick with it. Colitis is far from the end of your world. Just remember that everyone is different and what works for one may not work for others. Ultimately you will come through this and life will go on.
21. There is a medicine in Ayurveda known as “Moti Pishthi”. It is available in powder form in the open market. Decide the dose as per advice of doctor. It is very nice medicine for UC. I strongly feel that it will help in maintaining the remission.
22. I have had some good results by using Intermittent Fasting. I confine my food intake to an 8-hour or less period each day. I have found that if I do not eat anything until after noon that I usually do not need to get up in the middle of the night to poop. It has also helped me to lose a few pounds.  I have had colitis for 24 years now. I am 56 years old. The past few years have been tough as I have been flaring to various degrees the entire time. I have begun using Arabinogalactan for about three weeks now due to reading positive results from a couple of Ihaveuc letters that were emailed to me. I have noticed a good improvement in formed poops as opposed to the usual cramping, urgency, shrapnel poops I have been accustomed to the past few years.  I get Fiberaid from Swanson Vitamins in the powdered form and take three doses mixed with water a day. Three grams per dose. I studied Arabinogalactan quite a bit on the net before beginning usage. It has many other benefits as well as colon health and virtually no side effects. Maybe a little extra gas but I am happy to just be able to fart without spraying my unders.  I would love to hear more data from other Ihaveuc followers about their experience with Arabinogalactan.  Rich
23. son has large colon removed,leads 95% normal life. no-one knows if colitis is contagious but you cannot give blood.  never heard of hair loss and colitis
24. don’t eat late at night
25. IV iron (not pill form) helps some teen girls on Remicade with anemia. Helps prevent hair loss unless other meds also cause.  Bloodwork for kids is easier with Remicade since done at same time (one IV/bloodwork stick) per treatment. Drink a lot of water the day before bloodwork and heating pads on the hands for kids with gloves prior to draw has helped us.
26. Definitely on the weight gain after a flare up. specifically when you’re on high dose steroids. Then it takes forever to loose the moon face and added belly fat.
27. Weight gain is difficult, but important. I counted calories, made sure I ate some healthier high-caloric foods that I could handle, and I ate at least two snacks a day. I also started to exercise again, no cardio, but yoga to work on muscles and strength.
28. Yes to hair loss! Mine is cut super short pixie right now due to hair loss. I could be convinced that it is due to the medications… But still At a Loss for an answer!
29. No matter what you think is not possible with UC or Crohns, there is always a way. I recently had my colon removed for sever UC or possible crohns. I fought UC for 3 years and in the end I was in the bathroom 25-30 times a day. I did everything I could medication wise and not. I tried different diets, probiotics, fecal transplants, vitamins, supplement powders, and anythine else I found. In the end I made the decision to get my life back and had surgery. I feel the best I have in years. Even with complications after the initial surgery and another surgery and hospital stay I feel great. I was down to 115 pounds after my second surgery in a week and a half under 2 months ago and I am back up to 140 pounds which is the most I have weighted in 2 years. Dont give up hope, try everything you can, and know that things will get better. Teddy
30. Listen to your body and keep a food journal. I have found that home-cooked meals agree with me much better than take-out or restaurant fare, so again, listen to your body.
31. Hair falling out and late-night snacking? Tough questions.
32. Stay strong and always carry a diaper bag!
33. I need some advice and that is how to ever get off the powerful drug Prednisone. As soon as you taper down to a lower MG, it seems that the flares take another hold and you have to move up to a higher MG of the Prednisone. Also, I read an hear a ton of info about certain diets that help control UC. My Gastro DR. says diet has NOTHING to do with UC. Boy…………am I confused. I really think UC is a total MYSTERY. JKB
34. be attentive to how your body react to foods. bad food becomes no go or you gogo…
35. Wouldn’t recommend eating late at night as gut motility can disrupt sleep.
36. U can live a normal life without a Colon !!! No more pain for 15 months now!!!!
37. colitis is and up and down fight.you just roll with what makes you feel the best.
38. the best thing iv taken for my uc is the remicade.iv tryed everything u could think of and this is the best ever. my uc hasent flared up in over a year.
39. Some questions apply to individuals everyone is so different as are the meds and foods for each uc person
40. I have gained weight after a flare but very slowly. Colitis is not contagious. I have received Remicade infusions in the hospital and at an infusion center at any time of the day or night. Most of the time you will get a dose of benadryl in either pill form or by IV. I challenge anyone to keep their eyes open after IV benadryl. I have asked my doctor about Humira. Specifically if I could stop Remicade, the answer was no and also, can I go on Humira if Remicade stops working. There is a 10% chance of Humira working for me after Remicade. Also, if you stop Remicade it may not be as effective if you need to resume Remicade. I am in Remission, no syptoms, no diet limitations, regular bowel movements. I feel cured. I have asked my GI Doc if I can stop taking Imuran daily and Remicade infusions every 8 weeks and he has said no. Remicade and Imuran together took about 8 mos to achieve semi remission and about a year for total remission. Without a colon you poop in a bag (ileostomy). My hair fell out during my worst flares because of the lack of nutrition. I have colitis, I eat late at night whenever I want to. I am in remission, I am not cured. I am knocking on wood.
41. Always get second opinions. Take your medication on time every day to see if it really works for you. If you are not happy with the results, see your doctor again. If he/she does not want to try something new, see another doctor. My friend and I had colitis, he was aggressive. I was not. He was always visiting the doctor and calling him. He switched doctors a few times and tried different meds. I did not try very much. I did not take the medication regualarly. I ended up getting a colectomy right away. He finally found a medication that works for him and only goes to the restroom 3-4 times a day. I eventually ended up with a J pouch that I am extremely happy with, but I went through alot of surgeries and complications.
42. Probiotics have saved me from horrible flare ups and balances my entire body.
43. Q6: A normal life would involve being normal. Not having a colon is abnormal. What are the red asterisks indicating?
44. Been on low dose meds (balsalazide disodium), eat gluten free, and go to a naturopath path regularly. Prescribed natural meds in regard to blood work results. I’ve had some flares which I believe were triggered by high stress levels and also when I had to take antibiotics for pneumonia, but otherwise flare free for the most part.
45. Life goes on, you just learn to adjust
46. High doses of vitamin D have helped me tremendously.
47. Just about anything that you can do without colitis, you can do with colitis. Like without a colon and free of colitis is worth considering if all else has failed and you are tired of being sick.
48. Everyone is different. What works for some people won’t always work for others. Don’t despair. I didn’t think I’d ever feel better and now I do.
49. I feel what works best for me,is having smaller meals more often during the day.especially fruits as snacks.
50. I was on humira July 2013 and it made me worse, on Remicade since October 2013 and I am a brand new man now back to normal after 3 years of torture.
51. I was on humira July 2013 and it made me worse, on Remicade since October 2013 and I am a brand new man now back to normal after 3 years of torture.
52. Every person is different. I personally don’t recommend eating late at night (specifically before bed) for any person. However, it is possible….potentially painful, but possible. I’m not sure if hair loss is specific to the disease or more likely due to medications.
53. I’ve only had Remicade infusions during the day, during clinic hours at the hospital. So, I’m not sure if time of day matters………
54. You have to make a decision between “can I do this?” and “should I do this?’ Eating late at night is not advisable even with a normal-functioning colon.
55. Try to relax and breathe! And hug a dog…it’ll help you get through even your worst days!!!
56. You can lose your hair with or without ulcerative colitis or colitis
57. Find a good GI Doctor that you trust and that you know has been around for a while.
58. You have to be very proactive about your health. GI doctors don’t necessarily support dietary changes and just seem to want to fling medication at you. Everybody is different.
59. I had j pouch surgery in Jan 2013 and it’s the best decision I’ve made about my UC. Now I’m almost like I was pre UC!
60. 1) Just like you loose weight during a flare, after it is over, you can still gain weight. When I was 22 and diagnosed with Crohn’s after a massive resection, I was told to eat or die. I went down from 190 lbs to 135 lbs in 4 weeks. The doctor told me in no uncertain terms that I was going to die or I would have to go through life with an aortic shunt to feed my body. I began to eat. Now at 65 I weigh 280 lbs and am fighting to get about 100 lbs off. Go figure. 2) You can absolutely not get colitis or Crohn’s from your partner. 5) Yes you can have a mile case of colitis or Crohn’s. 6) While I still have my colon, I have debated whether to have it removed or not. I have so many friends without and they do everything the want, ever sex. 7) You can still poop without a colon but not in the same form. 8) Your hair will fall out whether or not you have colitis or not. 9) You can eat whenever you want.
61. It’s all a ” crap” shoot!! This is an up and down disease, I treat my body right and hope always for the best
62. Per question #7 no you cannot poop normally without a colon but you can still poop into your Ostomy bag from your stoma! It’s a different sensation but you are still “pooping” in a sense. Once you have your new “colon” aka your J Pouch then you can poop again. It’s not a colon but it’s a replacement!
63. I’ve realised that there’s a lot I don’t know about colitis!
64. Stay on a starch free diet
65. Diet and exercise have drastically helped me. When you are at your worst just know that things will get better.
66. My helpful advice would be for anyone that hasn’t tried the scd diet or paleo diet to give it a go. I’m 9 months on diet now and med free since February!
67. When you get colitis flare avoid all kind of fruits and veg. Avoid taking iron supplement. Eat white starchy food and plenty of water and relax. this works for me. after few weeks start eating all the normal food.  I have colitis for 14 yrs. i usually get flare in Autumn- winter time and last 2-3 months to get complete recover and only admitted to hospital once.  Now i started yoga and meditation and over 3 yrs without flare!!
68. I feel very strongly about a NO answer to question No. 9. I have proven to myself, time and time again, that eating late at night is guaranteed to cause discomfort and depending on how late and how much I have eaten…will cause exteme pain. The only solution when this happens is to sleep in an upright position. It can help. It is just better to not eat anything for several hour before going to bed.
69. Do not use conditioner on your hair as it is a chemical and makes the hair loss a little heavier
70. List any new med’s or reports on remission.
71. Love what you are doing Adam but why focus on Remicade in 2 out of 10 questions, how about some of the modalities that help people? And asking if hair falls out from colitis is a off, is it b/c of colitis, or the associated drugs people chose to take out of not knowing better or, perhaps other avenues not working?
72. Keeping a daily log/diary of what I eat and subsequent bowel activity is helpful to track meta patterns. It’s motivating to see feedback that my diet plays a factor.
73. Not much has been said about the link between hair loss and colitis. I think there is a strong link between the two, maybe it is the medication or maybe it is the condition itself that causes it.
74. You can still eat late at night, you might just have terrible stomach issues and pooping issues depending on your body.
75. Q6 You certainly can live a normal life with UC. The key is to not let that define who you are. Make the most of life with what you got. Learn to deal with UC the best you can. Use resources like this website for support.
76. I’m sure most of you do this but making a food diary was the best thing I had ever done. It keeps me in tune with what I can or can not eat. Each of us are different even though we have the same disease.
77. feel quite stupid as i dont seem to know a lot – i was diagnosed last year after being very poorly and spending over 2 weeks in hospital
78. Stay away from beer and tomato products, ibuprofen to avoid flares, try prednisone at a lower dose 5 MG saves cutting down and works.
79. Stay away from beer and tomato products, ibuprofen to avoid flares, try prednisone at a lower dose 5 MG saves cutting down and works.
80. When I was first diagnosed with UC, the disease was confined to the sigmoid colon and I led a fairly normal life and controlled it with Cortifoam. In year eight, the disease progressed to pancolitis, since then, it is much harder to get and retain remission, eat late at night etc. I think all of these questions are somewhat subjective and depend on the individual, the extent of the disease and the response to medications.
81. I lost a lot of hair (talking about handfuls at a time) after being in the hospital for 9 days on high dose steroids AND gained 15 pounds which WILL NOT GO AWAY. Ugh!
82. I’ve been on your site for just a little over a month. Many medications are discussed, however, I haven’t seen anything related to Lyalda which is the med I’ve been on since April. I first found out about my UC in February 2014. My father had colon cancer and I was told that UC is hereditary. Not sure if that’s true.
83. It’s important to do what works for you. Everyone is different. For me, yogurt and dairy are great. Brussel sprouts and concord grapes (which I love are not great). Medicine is great- I take it regularly and will never be without it. Regular exercise is great (but not running that kills me). Do what works for you.
84. At the six month mark following my j pouch take down surgery and doing pretty well without a colon/rectum. The best part is no more flares, meds or diet restrictions. Hasn’t been easy but getting better each week. Was an easy decision based on how sick I had gotten (childhood diagnosis, 25 years symptom free, hit my 40s and UC was kicking my ass furiously), and had a great surgeon and support network so absolutely no regrets.
85. #3 – I believe technically Remicade could be infused at night, but it would be difficult to arrange with your provider.
86. Remicade almost killed me. VERY dangerous drug.
87. The loss of hair typically has to do with how sick you are. Your body puts energy into fighting the disease and hair is not a vital “organ” it must keep alive. It often happens after three months of severe illness. Of course medication can play a role in this too, but it’s not always the main culprit. I learned this while going through a horrible 3.5 year flare.
88. Eat healthy and take relevant probiotics.
89. My clinic doesn’t do remicade infusions at night, but only because they close at 6pm and need everyone finished by then; most infusions begin around 2pm. My understanding is that, if you tolerate remicade well, it doesn’t matter what time of day you receive it. However, if you stop taking remicade, your body is likely to build up antibodies and then be unable to tolerate it later if you want to resume the medication. Some people are able to stop and then start again, but it’s quite risky, as reactions can be dangerous and even life-threatening.
90. Fecal Transplant has made a big difference for me.
91. I was told by my GI that the first biologic always works the best and as you change to another it is never as effective as the first. Humira and Remicade both caused allergic reactions for me. I think that was God’s way of saying He didn’t want me pumping medicine in my body for the rest of my life. SCD is a challenge, it makes life difficult at times, but it is really safest and healthiest way to treat your IBD, if you can do it, there is a certain “it” factor that it takes to stick with the diet. We can all do it, support is huge, and commitment to a healthy lifestyle.
92. Most of the bloating receds when the flare is reduced
93. watch what you eat and when. try to eliminate alcohol, walking really helps. drink lots of water.
94. 35 years of UC. Five years with a J pouch. Miss my colon.
95. Good probiotics are playing a big role. Also wheat germ seems to help calming the digestive system
96. In remission for 5 months, diet, probiotics(at least 100 billions), whey proteine, curcumin, fish oil, iron. Its all that I need.  Most import thing:free of terrible medication
97. No matter how low you feel during a colitis flare, there is always a light at the end of the tunnel. Many times I have felt like giving up, but I’m so glad I didn’t
98. Get a dachshund.
99. I’ve lived with mild to moderate ulcerative colitis most of my life. As long as I am careful with diet and stress, I lead a totally normal life. Too much alcohol can also cause problems, so happy hours are not always the best option for me.
100. I honestly don’t know the answer to most of these questions due to lack of experience
101. Every item listed above…everyone is different!
102. The best advice I can give, Is to get the book “Breaking the Vicious Cycle” about the SCD Diet, (Specific Carbohydrate Diet). I had been in Prednisone, 40 mg. day for almost 5 months when I read the book and started the diet. I have now been in complete remission for 2 weeks. It…..really……works.
103. Almost all colitis is different.
104. I personally don’t try to eat a meal late at night. It just helps the colitis when there is sufficient digestion time. Also, weight gain can happen, it does take time by carefully upping calorie intake (and patience not to be freaking out especially when even friends say ‘oh you’re so skinny.’). In my case I started taking vitamin A to help my colon with absorption.
105. I personally try not to eat late at night. Presently the only medication I am using if whole food through a paleo diet along with vitamins and other things recommended on your site.
106. My ulcerative colitis seems mild as only get the blood: no cramps or pain and one bowel movement in the morning which is loose. Don’t know what ‘remicade’ is. I refused to go on any medication: trying SCD and juicing only which is making a big difference. Thanks Adam. your site is great and u down to earth Jacqueline Mullally
107. I have moderate UC. Know your trigger foods. For me, onion (especially raw) and hot pepper seeds wreaks havoc on my colon. My flares generally subside in 24 hrs.
108. It’s hard for me to sleep at night after a big meal so eating before going to bed isn’t something I do.
109. I would not advise eating late at night……I think the more you eat the more you will have to go to bathroom…..six small meals during the day really does work.
110. Don’t let your life gravitate around UC.
111. I had my colon removed over 2 years ago now and had a reversal around 14 months ago. Live is now so much easier than at any point I had UC. I never have to worry too much about where a toilet is or how long I’m going to be away from home for. For me having the operation was the best decision I made since being diagnosed with UC.
112. Diet is very important to relieve abdominal pain,cramps,spasms and nausea etc,DO NOT EAT ONIONS,PEPPERS,CHILLIES – TOMATOES,ORANGES,LEMONS,GRAPEFRUIT,STRAWBERRIES or their JUICES(To Acidic) CABBAGE,BRUSSEL SPROUTS,CAULIFLOWER,BAKED BEANS cause GAS NOTE :- Which foods cause you problems and eliminate.Regards Kim
113. Colitis doesn’t have to ruin your life. Work on the reasons why you got ill and then you can work out how to get well again.
114. Had it 9 years and it sucks. My advice is how do ask about some sort of pain management with out the GI and his PA making me feel worse, “Take an acetaminophen, Chris. And do what you gotta do.” WTF does that even mean? -peace
115. Eat well and continue with your medication as best you can and if something is working talk with your dr. And ask to try different medications
116. always scope out where the bathrooms are located
117. Scd/Gaps diets have helped me the most… But there is always some struggle.
118. Have never taken the meds mentioned above. Am not sure what “without a colon” means. Does is mean with a bag or whatever the devise is?
119. cannabis releves stress wich releves colitis
120. I just had a colonoscopy done, and my doctor said that I have mild colitis. I have now had ulcerative colitis for 11 years and this year I feel like my hair is falling out a lot. Experiencing low iron constantly so I find it hard to tell whether it is my iron levels that is causing my hair to fall out or if it is my colitis. I wish I could find out which one it is.
121. Always watch your diet. Stay away from seeds, nuts, fried food, spicy, and things that are hard to digest. Do your best to elviate stress and take one day at a time.
122. I am not sure about the hair falling out if you are not on meds for UC, but it is a side effect of some of the medications. I had stick straight hair my whole life and now am in my 50’s. When I went on 6mp 4 years ago my hair started getting curly, so it did not fall out it just got really curly. I guess this is not really advice I just wanted to let people know not all side effects are bad.
123. Follow SCD or GAPS and reduce your meds, flares and other UC complications.
124. Hang in there Remissions happen
125. Living a normal life is possible.
126. Yes, you can still eat late at night when you have colitis; but why would you want to? It is not a healthy partice to eat and go to bed on a full stomach even when you do not have colitis.
127. Hair loss can be due to anemia or other nutritional deficiencies resulting from uc, some people might find the medications they take to treat uc can cause hair loss. Some types of colitis can be caused by sexually transmitted diseases but ulcerative colitis is an autoimmune disease and can’t be passed in this way.
128. First I just want to say that I honestly don’t know the answers to most of these questions as I was diagnosed just last November. There’s a lot that I still need to learn about this disease. The one thing I’d say that could be helpful is to watch what you eat and listen to your stomach. I have been keeping a food journal by writing down what I eat and making notations of foods that irritate my stomach. This is how I know what to stay away from.
129. I would clarify that hair loss is typically a side effect from use of medications and not from the disease itself.
130. It’s not a good idea to eat at night while in a flare. I believe the reason we lose hair is not because of colitis itself, but because of the medications for colitis. Our bodies still produce waste so we need a way to get rid of it, hence a colostomy bag or j-pouch after having the colon removed. My colitis started out as mild so, yes, we can have mild colitis. Our bodies produce antibodies to Remicade so actually, we can go back on Remidade after being Humira but we should not be on Humira at the same time and only if an anti-histamine is administered. Also, remicade infusions shouldn’t be administered at night because it takes several hours. Since colitis is an auto-immune disease, it isn’t contagious.  After my last flare, I lost 14 lbs. I craved protein, mainly meat, even though I don’t eat it, but I did eventually gain all my weight back, darn it.
131. I just wanted to let you know that I read your post recently about l-glutamine and tried it and have had significantly less bleeding. Still taking sulfasalazine and Imuran.
132. I had my colon removed a year and a month ago and all I have to say is…..BEST DECISION OF MY LIFE!!!! Yes I still poop, and my life is normal! Just went to Vegas! Living my life again for the first time in years! No meds! Working out again, looking better than I have in forever and feeling fantastic! I probably poop….2-4 times a day. It’s awesome! No pain, no urgency, no feeling like poop! Lol! I’m me again and I am grateful for my jpouch!!!! I kicked UC’s butt!
133. Hair falls out as a result of medication, not the disease.
134. I feel like I only have mild form of colitis, but I’m not sure if that’s possible. What I mean is, perhaps it can get worse as time goes by. I’m not really sure. I was diagnosed in February 2011 and have only had two instances I would consider flares since (times that needed medical intervention). This doesn’t count the original flare that brought about the diagnosis. I do not take medication on a regular basis, just suppositories or enemas as needed.
135. I don’t have a Colon any more due to UC… But I’m ‘No Colon Still Rollin’.
136. For me, my hair falls out for two different reasons since I’ve been diagnosed. One, when inflammation is going on in your body all of the nutrients and good things that normally go into growing hair and nails are directed at fixing the inflammation in your colon and this leads to hair falling out in clumps or nails going really brittle. Add Prednisone into the mix (at a time period of more than two months) and you get a double whammy in terms of hair falling out. Learn to love pony tails and hats!!
137. You’re not alone.
138. One of the best answers for 06. Can you live a normal life without a colon? would be Blake Beckford. He’s been everywhere in the media lately. Blake is a fitness model living with an Ileostomy, helping overcome the stigma of Ostomys. You can absolutely lead a normal, happy, and productive life without a colon and Blake is doing so quite publicly.
139. Stay brave,life gets better. My ileostomy saved my life; I consider it a friend.
140. Hair fell out mostly when on Prednisone for 5 months. Just getting off a flare due to heavy stress. Been SCD eating for over 5 years. The SCD definitely has aided in keeping the flare in check. Sleep seems to be SO important, can’t seem to get enough to heal well.
141. If you’re on cortisone your hair might fall out.
142. If you are new to UC no matter how bad your UC is know that you are not alone. Eventually some combo of meds and diet will probably help you get into remission. Many have had successful surgery also. Tons of info and stories on this site. Can’t thank Adam enough!
143. I tend to gain a pound or two after a flare up, but I have to be mindful of the food choices. I have received a few Remicade treatments at night and see no difference. Everything went fine. If my schedule has me eating late at night, i choose something lite and will take antacids and sit up for a while before going to bed.
144. Everyone’s body is different and everyone will react to treatments differently. It will take time with some trial and error until you find what works for you. It will be difficult with lots of struggles and a lot of self doubt, but hang in there… It gets better!
145. vitamins and supplements over medication!!!
146. staying close to SCD diet, plus 24hour yogurt, kvass, kombucha, homemade lacto-fermented, plus daily petitions to the Lord has ‘healed’ me. Zero symptoms in 8 months and no medication for 14 months. Thank you for being a support to those who suffer from this specific issue. I will help where needed as well.
147. A lot of answers may depend on what drugs they are using to treat your colitis.
148. I have a mild case of UC. It doesn’t affect my day to day life much. I’m thankful it can be managed with medication.
149. Re question can u poop? I said yes to this because you poop into a bag instead of through anus.
150. I gained weight as i was on Steroids. I am on Pentasa, Mercaptopurine and Allopurinol so have no idea what these other drugs are I have/had severe UC – so I’m guessing there are different levels,Sarah
151. everyone/everybody is different-listen to your body and use the good common sense God gave you!!
152. Gaining weight after a flare is EASY! I wish sometimes the weight would stay off :)
153. In relation to the question, can you still eat late at night. It depends on the person. Everyone is different so this question cannot be answered. Some people suffer more in the morning and some more so at night.
154. Just keep in mind that colitis is a very personal disease and the symptoms can vary widely from person to person. When it comes to treatments and management, what works for one person may not work for another. It may sound cliché, but listen to your body. After 17 years of living with colitis, I have a very good handle on what foods, supplements, etc. I can eat/take and how they affect me. I work closely with my GI doctor to ensure safety and effectiveness of anything we decide to try. Best wishes to everyone.
155. Try not to stress too much as I find it worsens my symptoms!
156. I feel with some of the medications you can defentley gain weight!  Prednisone, and imuran
157. You can eat late at night, but you might pay for it the next day or day after. Super regulated nutrition has been a fundamental building block in constructing a life w/ UC. Since I’ve was diagnosed with left sided UC, my weight has fluctuated from a hefty 260 to a leaner 225 and all over the middle of that range. However, once I committed to a regular eating schedule, logged eating habits for a couple months, dumping certain foods, and 95% giving up alcohol (occasional beer/cocktail w/ dinner) i have maintained a paltry 230. My goal weight is 200 lbs….i’ll get there. After reading all the stories on here, and observing my own problem, I would classify myself as a mild case of UC, although I realize that I can make it worse with bad choices over the short and long term.
158. 1. Its hard to gain weight after a flare. 7. I think you can still Poop, just not out of your anus.
159. It’s all about diet for me.
160. If you are losing a lot of hair, have your iron level checked. Iron deficiency anemia, among other things, can cause hair loss. Along that same line, be careful with iron supplements–they can be very harsh on your digestive system. Doctors think they only cause C. In my case, the 2 different ones I tried gave me the worst pain and D I have ever had. I am struggling badly with anemia right now.
161. You can eat anytime but the more you eat the more you poop! Hair can fall out with Biologics.
162. Appreciate the great days !
163. I have pancolitis and I have lost some of my hair due to all the medicines I take.
164. Hang in there! Use your down times to grow yourself so when you do feel better, you can make a difference in someone else’s life.
165. Although you can eat late at night usually best not to if flaring! I’ve only really had hair thinning due to the drugs I take.
166. You can live a normal healthy life without a colon. I suffered needlessly for years, removing my colon was the best decision I ever made. I have a BCIR so there is no external appliance.
167. No biologics or immunosuppressants for me. These are just plain dangerous and bad. Life would not be “normal” without a colon. Loss of blood and iron can cause hair loss. Tend to lose weight during a flare up.
168. everyone is different…this disease behaves different for everyone.
169. Gaining weight after a flare is tough and it takes time (months), but it is possible!!!
170. I have recently started to wean off my medication (6-MP) and I’m finding my lovely thick hair is slowly coming back. It’s no longer falling out in thick clumps in the shower as it was when I was on my highest dose of the medication. As a woman, this can be very distressing, as I’m sure it can be for men too. But when your long glossy hair that you’ve always taken for granted starts to fall away it’s hard to stay focused on the bigger picture. For me it was too much. It was the final push that made me want to go medication free.  I recently dealt with a vicious flare with meal replacement drinks, SCD dinners and lots of VSL! I also drink plantago powder on a daily basis which is soothing for the digestive system and I try to get lots of sleep. I’ve gone from 12-14 BMs a day ten days ago, down to two a day as of yesterday. I also use enemas as they are a quick and effective way of getting a flare under control without going on steroids. This might not work forever but right now it seems like a better option than going back on pred!  FMT scheduled in for the 4th September as well people :) This with diet I hope will change my life!! I will keep you updated x
171. I don’t think you can go back to remicade once you stop it.
172. You can do anything if you want to!! Even with this horrible disease!
173. Be happy

 

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And that concludes this month’s Colitis Q&A session.

Once again, I’d really like to thank everyone from the newsletter group who participated, and I wish you all an excellent rest of August and a happy start to September.

Adam Scheuer

diagnosed with UC Oct. 2008

started iHaveUC.com shortly thereafter