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Posted 6/21/2013 7:38 PM (GMT 0)

quincy said...
Rectal meds deal with the rectum and sigmoid...depending on if you use enemas or suppositories. Since UC starts at the rectum and heals lastly, using rectal meds are a common-sense approach in addition to the oral 5ASA.

ARe you still on sulfasalazine?

How many times a day are you having diarrhea? Are you also bleeding?

Where exactly is the location of your UC...limited (to where) or throughout?

have you had stool samples done to determine if you have anything else going on?

q

I am still on sulfasalazine. I have a horrible spell of diarrhea up to 6 times every morning. And then throughout the day it is sporadic. I was told it was left sided and gave stool samples when diagnosed and was told I have no infections. I don't bleed as much anymore after changing my diet but the pain continues to get worse... which confuses me.
Posted 6/21/2013 7:40 PM (GMT 0)
I felt hopeless like you also when diagnosed. I also felt like it would just be better to have the colon removed. I felt like I had suffered so long and things didn't get livable fast enough. I would just cry thinking of how my daughter's life would be ruined from having to deal with her mother's bathroom trips the rest of my life. I just didn't understand this disease, and felt like I was being shuffled through the GI visits.

I had been flaring badly (20+ times of urgent D) for my last 4 months of pregnancy. I was undiagnosed for so long, had a baby (via C-section), and things stopped. I thought I was back to normal again. When my daughter was 3 months old, it came back with a vengeance again. I suffered another 4-6 weeks before finally getting a colonoscopy and diagnosis. I was on the pred for several months. Yes, it got better than 20+ times per day, but it was still 10+ times per day and not ideal. Over a period of 6 months or so, I changed doctors twice. If you count the GI that I saw while pregnant, I saw 3 doctors within a year.

For me, a lot of my state of mind hinged on trying to get some amount of control back into my life. I spoke with a counselor at one point, and she encouraged me to get my "care team" in order. This was crucial for me. It involved a network of support - medical, emotional, all facets. She encouraged me to switch from doctor #2 to doctor #3. She encouraged me to visit with a dietician. I found an IBD support group in my area and connected with those people. It was just a lot of small steps to feel like I had an amount of control.

I did like my doctor #3 pretty well. I thought he had was sympathetic and spent a good deal of time with me. But after about 6-8 months things were just not were I thought they should be. It wasn't horrible, but I still had those bouts of urgency and it seemed like 8 BMs a day was still too many. So, I made the decision to switch doctors once again. This time 30 miles away. I'm really glad that I made that step. I really like my care providers now. You can search this forum for my fecal transplant success. I know it doesn't work for everyone. And it may not work forever for me. But I am finally at a happy place, and feel mostly "normal" again. UC does not control my life right now!! All this just to say -- keep in mind that these forums are great, but sometimes as we get well and go about our life, we don't check in. Things may get better for you. I would try to stick it out a bit more, find what treatments, doctors, diets, etc might work for you. I think you will find something that just seems to give you peace as you press forward to get yourself better!!

Best wishes!
Posted 6/21/2013 8:01 PM (GMT 0)

kazbern said...
Kassie, please find a DR who can treat you effectively. Being on prednisone for 3 months without a significant improvement in your symptoms is not safe for you, not to mention giving you side effects which are making you more unhappy, too. Your dose of sulfazine is probably not sufficient, either, although this med has potentially unpleasant side effects, too, and maybe you'd be better off with something else.

Rectal meds will absolutely help you get to remission faster. Remission will mean that you won't have diarrhea, you won't have pain, you won't be exhausted. You should be able to return to your previously healthy life.

You should also do your best to learn as much as you can about this disease (see the links at the top of the forum) and about what was found on your scopes and CTs. You can ask the DR to send you a copy of your records.

I am sorry to hear that you are trying to manage all this without insurance. In 100 days you can sign up for insurance through the new exchanges under the Affordable Care Act. I hope you will do that, because this is a chronic illness and it will need to be managed for the rest of your life.

Thank you very much I will ask the next doctor about the rectal meds and can't believe they weren't mentioned before. And thank you for the affordable care information. I will do whatever I can to get this under control.
Posted 6/21/2013 8:03 PM (GMT 0)

@LoLil said...
I felt hopeless like you also when diagnosed. I also felt like it would just be better to have the colon removed. I felt like I had suffered so long and things didn't get livable fast enough. I would just cry thinking of how my daughter's life would be ruined from having to deal with her mother's bathroom trips the rest of my life. I just didn't understand this disease, and felt like I was being shuffled through the GI visits.

I had been flaring badly (20+ times of urgent D) for my last 4 months of pregnancy. I was undiagnosed for so long, had a baby (via C-section), and things stopped. I thought I was back to normal again. When my daughter was 3 months old, it came back with a vengeance again. I suffered another 4-6 weeks before finally getting a colonoscopy and diagnosis. I was on the pred for several months. Yes, it got better than 20+ times per day, but it was still 10+ times per day and not ideal. Over a period of 6 months or so, I changed doctors twice. If you count the GI that I saw while pregnant, I saw 3 doctors within a year.

For me, a lot of my state of mind hinged on trying to get some amount of control back into my life. I spoke with a counselor at one point, and she encouraged me to get my "care team" in order. This was crucial for me. It involved a network of support - medical, emotional, all facets. She encouraged me to switch from doctor #2 to doctor #3. She encouraged me to visit with a dietician. I found an IBD support group in my area and connected with those people. It was just a lot of small steps to feel like I had an amount of control.

I did like my doctor #3 pretty well. I thought he had was sympathetic and spent a good deal of time with me. But after about 6-8 months things were just not were I thought they should be. It wasn't horrible, but I still had those bouts of urgency and it seemed like 8 BMs a day was still too many. So, I made the decision to switch doctors once again. This time 30 miles away. I'm really glad that I made that step. I really like my care providers now. You can search this forum for my fecal transplant success. I know it doesn't work for everyone. And it may not work forever for me. But I am finally at a happy place, and feel mostly "normal" again. UC does not control my life right now!! All this just to say -- keep in mind that these forums are great, but sometimes as we get well and go about our life, we don't check in. Things may get better for you. I would try to stick it out a bit more, find what treatments, doctors, diets, etc might work for you. I think you will find something that just seems to give you peace as you press forward to get yourself better!!

Best wishes!

Thank you very much for the words of encouragement. What diet changes did you make though? And medicines that worked for you? My issue is frequency, but not so much as the pain for me. I can in constant pain and can't seem to get relief.
Posted 6/22/2013 1:33 AM (GMT 0)
Kassie, i was going 15-20x a day with pretty much no control, so couldn't leave the house - Seeing the blood every time was what frightened me. I

had a heap of tests which lead to a colonoscopy which diagnosed me with left sided UC just past sigmoid. My GI put me on Pentasa, which i continued i took for about 3-4months with little improvement - then also introduced steroid rectal meds, which didn't do much either.

GI then put me on a course of prednisone, starting at 40mg tapering down 5mg each week. He did not suggest taking rectal meds as well, however with the research i did on this site i could see that it could help when tapering off the pred, so i insisted on having them as well.

Fortunately for me the prednisone got me on track with little side effects. I continued taking Pentasa oral meds and enemas daily throughout the course of prednisone and once finished.

Food, at the time dairy effected me the most. but generally any food went straight through me.

After about 6 months of having no symptoms, blood, urgency, mucus, or constipation i would miss out an enema here and there slowly looking to reduce to every 2nd or 3rd night. Now i go for a good well formed BM once a day maybe twice and consider myself to be in remission - so probably about a year to get to here but about 6months for my quality of life to improve.

Food, i pretty much eat what ever i want now but make sure im eating more fibre and try not to eat too much sugar.

Initially my thinking was a little like yours thinking, worst case scenario i could have surgery. But the more research i did the more options and success stories i came across. I however am fortunate to live in a country were health care is affordable so i had more of a choice that you may have...... I really don't think i would be where i am today if i hadn't introduced the mesalazine enemas and unfortunately this was not offered to me i had to ask. If possible its really important to get a professional you can trust, and im not sure you should be trusting the one you have now??
Posted 6/22/2013 7:22 PM (GMT 0)
kassie hahn - You asked about diet changes and meds that worked. When I was pregnant and undiagnosed, I had no idea what was happening to my body. I was so scared for my baby, since I was losing weight daily. I read lots of things on the internet, and listened to health food people. I decided to try gluten-free and dairy-free for awhile to see if that helped. I did complete dairy-free for a month. I was strict on myself - no butter, no cheese, etc no eating out where I thought anything might have any dairy. Did it help me? No not really, except for the fact I think I consumed less calories, therefore I had less BMs. I never had severe cramping, it was the urgent/frequent D that killed me. I ended up with so much anxiety about eating. I didn't want to eat, because of fears of what everything was doing to me. I know a lot of people here try different diets that eliminate entire groups of foods (SCD, Paleo, etc). I admire their ability to press on with these diets. I just couldn't. That was when I seriously thought it would be better to live without my colon than deprive myself of eating out from time to time or enjoy foods at someone's house / party. Determining what I could/couldn't eat was causing me so much stress all the time. So instead, I have a friend who is a bit of a positive thinker / spiritualist. She basically encouraged me to go with what "felt right" to me, to my body. During those times, that I felt like everyone was telling me what NOT to eat, I couldn't think clearly of what I COULD eat. I just felt discouraged. This was all a process -- not something easily resolved. And even still to this day, I have a few foods that make me think twice about eating. I have re-introduced things slowly.

I did find the book, "How to Cook for Crohn's and Colitis" helpful. Since it had actual recipes and seemed to help answer the question on what I COULD eat. In those early days of getting better, I definitely avoided raw vegetables, beef (of any kind), peels of veg/fruits, chunky nuts, corn, popcorn, etc. I tried to cook foods for myself and get my veggies in by pureeing them, and adding them to a sauce or a soup. I ate a lot of chicken, rice, fish, a cooked vegetables (zucchini, carrots, squash, potatoes, avocados, bananas, tomatoes, etc. I tried to think in terms of eating foods that were easily digestible. As I got better, I would introduce things slowly - remember to give myself the question on how *I* thought *my* body handled a certain food.

As for meds -- I was basically on prednisone on some dosage for probably 8 months. I can't remember. I was on a low dosage for multiple months. Fortunately, I never had much of the physical side affects, but I did have sleep problems. I tried 2 different mesalamines, before ending up with Lialda. My 3rd GI wanted me off Pred. completely and I took the max dosage Lialda only for awhile. That's when I was still going probably 8-10x per day and I still didn't find that to be a long term solution. That GI told me how well I was doing compared to lots of people and that 8-10x per day would likely be my new normal. I switched GIs to see if there was a different approach. My 4th GI convinced me that 8-10x was NOT acceptable and said that we should try Fecal Transplant. But I needed to go onto Imuran (Aza.) to be able to take the FT successfully. It really wasn't until going on Imuran (Aza.) that things really got under control. I really didn't want to be on an immunosuppresant the rest of my life, so I was really willing to try the Fecal Transplant. I was on the Aza. for probably 3 months total. I never really felt any side affects -- I had to go for the monthly blood tests at first. It was just the fact that I went from a perfectly healthy person to popping over 14 pills a day that I couldn't get past. I know there are lots of people on Imuran, and it has been around a long time. I just really wanted to be off it!! The FT gave me that option!!

about the diet again -- what I did when I was flaring is different than how I eat now. I had a major fear of red meat (beef) for months even after being in remission. It took me a lot of courage to want to try it again. Even now, I don't eat it much. I just don't miss it. I have eaten it probably 5 times since doing my FT last August. I still wouldn't choose to eat a HUGE salad for a meal, but I will eat a small side salad and raw fruits/vegetables. I have also learned that about some of the FODMAP foods and how some of them cause more gas than others. I keep all these things in mind, and try to go overboard on anything that will cause problems. But I don't deprive myself from tasting it or enjoying it every now and then!
Posted 6/23/2013 12:05 AM (GMT 0)

@LoLil said...
kassie hahn - You asked about diet changes and meds that worked. When I was pregnant and undiagnosed, I had no idea what was happening to my body. I was so scared for my baby, since I was losing weight daily. I read lots of things on the internet, and listened to health food people. I decided to try gluten-free and dairy-free for awhile to see if that helped. I did complete dairy-free for a month. I was strict on myself - no butter, no cheese, etc no eating out where I thought anything might have any dairy. Did it help me? No not really, except for the fact I think I consumed less calories, therefore I had less BMs. I never had severe cramping, it was the urgent/frequent D that killed me. I ended up with so much anxiety about eating. I didn't want to eat, because of fears of what everything was doing to me. I know a lot of people here try different diets that eliminate entire groups of foods (SCD, Paleo, etc). I admire their ability to press on with these diets. I just couldn't. That was when I seriously thought it would be better to live without my colon than deprive myself of eating out from time to time or enjoy foods at someone's house / party. Determining what I could/couldn't eat was causing me so much stress all the time. So instead, I have a friend who is a bit of a positive thinker / spiritualist. She basically encouraged me to go with what "felt right" to me, to my body. During those times, that I felt like everyone was telling me what NOT to eat, I couldn't think clearly of what I COULD eat. I just felt discouraged. This was all a process -- not something easily resolved. And even still to this day, I have a few foods that make me think twice about eating. I have re-introduced things slowly.

I did find the book, "How to Cook for Crohn's and Colitis" helpful. Since it had actual recipes and seemed to help answer the question on what I COULD eat. In those early days of getting better, I definitely avoided raw vegetables, beef (of any kind), peels of veg/fruits, chunky nuts, corn, popcorn, etc. I tried to cook foods for myself and get my veggies in by pureeing them, and adding them to a sauce or a soup. I ate a lot of chicken, rice, fish, a cooked vegetables (zucchini, carrots, squash, potatoes, avocados, bananas, tomatoes, etc. I tried to think in terms of eating foods that were easily digestible. As I got better, I would introduce things slowly - remember to give myself the question on how *I* thought *my* body handled a certain food.

As for meds -- I was basically on prednisone on some dosage for probably 8 months. I can't remember. I was on a low dosage for multiple months. Fortunately, I never had much of the physical side affects, but I did have sleep problems. I tried 2 different mesalamines, before ending up with Lialda. My 3rd GI wanted me off Pred. completely and I took the max dosage Lialda only for awhile. That's when I was still going probably 8-10x per day and I still didn't find that to be a long term solution. That GI told me how well I was doing compared to lots of people and that 8-10x per day would likely be my new normal. I switched GIs to see if there was a different approach. My 4th GI convinced me that 8-10x was NOT acceptable and said that we should try Fecal Transplant. But I needed to go onto Imuran (Aza.) to be able to take the FT successfully. It really wasn't until going on Imuran (Aza.) that things really got under control. I really didn't want to be on an immunosuppresant the rest of my life, so I was really willing to try the Fecal Transplant. I was on the Aza. for probably 3 months total. I never really felt any side affects -- I had to go for the monthly blood tests at first. It was just the fact that I went from a perfectly healthy person to popping over 14 pills a day that I couldn't get past. I know there are lots of people on Imuran, and it has been around a long time. I just really wanted to be off it!! The FT gave me that option!!

about the diet again -- what I did when I was flaring is different than how I eat now. I had a major fear of red meat (beef) for months even after being in remission. It took me a lot of courage to want to try it again. Even now, I don't eat it much. I just don't miss it. I have eaten it probably 5 times since doing my FT last August. I still wouldn't choose to eat a HUGE salad for a meal, but I will eat a small side salad and raw fruits/vegetables. I have also learned that about some of the FODMAP foods and how some of them cause more gas than others. I keep all these things in mind, and try to go overboard on anything that will cause problems. But I don't deprive myself from tasting it or enjoying it every now and then!


Thank you so much for the response! I am going to look into Fecal bactiotherapy treatments asap! I have been on on the SCD diet but not really following it to a T when it comes to the stages. I have been eating the yogurt, making smoothies, eating eggs, drinking lots of water, I find the foods help to be easy on my stomach for now but don't really believe I have an issue with gluten or sugar in the long run...I think it's just a good guideline for now to keep my colon from getting mad at me haha. I know what you mean about being terrified of foods...and cannot believe I of all people am. I do really just want to cry and eat a lot of cake sometimes haha. I have lost a lot of weight and am thinking I need to introduce potatoes or something into my diet because I started at 110 lbs and am now reaching below 100. Its scary to look in the mirror anymore. I will ask about the FTs and hope they can help. When I had frequency alone I was not taking my disease seriously and still eating very bad and just paying the price all day...now that has sent me into something much worse and the pain is now my biggest issue.
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