JUST DIAGNOSED AND SCARED!!

Hi and welcome -

Diet seems to effect some people but it has no effect on me. I wish it did because that would be an easier fix in many ways.

How were you diagnosed? Was it during a colonoscopy? How much of your colon is affected?

Constipation can occur due to inflammation (which can also cause diarrhea). I am not very familiar with Balsalazide. It seems it is an 5-ASA drug which can help with the inflammation and hence may help the constipation.

Best of luck!

Thank you both for your kind replies. To answer your questions: Yes, because of my sysmtoms, I had a colonoscopy. The doctor said that my colon and part of my lower intestine was affected. You are correct in your assessment of the drug I am currently taking, Balsalazide. It is an anti-inflammatory and has done a fairly good job of controling my constitpation. I am also taking a bulk laxative and stool softeners.

I have noticed what I believe to be a side-effect but I cannot find a references to it online. It appears to be oral thrush. The back of my throat seems coated and somewhat numb. I have tried saline gargles, mouth wash, even yogurt but nothing seems to help. Could this be related to the Balsalazide? I have an appointment with the doctor for next week and will tell him about this. It seems I might need an anit-fungal medication to clear this up. BTW, what is Rowasa which you mentioned as an enema?

Thanks for your help!

Hi..welcome to the forum!

Definitely get on the rectal meds as well. The retention enemas would be better than the suppositories at this point.

The Colazal might have loosened your stool a bit...but it won't fully treat the rectum.

Regarding the oral thrush, it's not caused by the Balzalazide....

Were you recently on any antibiotics?

Are you on any meds for asthma? WEre you on prednisone previously?

I would suggest you change your toothbrush, lower your sugar intake, Brush twice a day including your tongue and get a tongue scraper.

You can empty a probiotic capsule in water or get powdered probiotics and mix some in water...swish your mouth with it, gargle a bit and then swallow.

If the thrush continues see your doctor so that he can prescribe an antifungal liquid med.

The stool softeners will help .... but it might be a good idea to start on some fibre supplements. I use the capsules.

q

Thanks, everybody for your comments.  Here's a recent update now that I have  more information about my condition.  First of all, my ulcerative colitis involves the cecum and the distal colon. I have responded well to the balsalazide but am only taking 3 pills twice a day (the doctor wanted me to take them 3X/day). 

The real improvement though (I believe) has come because of the probiotics that I have begun to take daily. (50 billion daily in capsule form).  I have seen a big improvement in my bowel movements and the bleeding has stopped.  I am no longer on the low residue diet and can eat pretty much what I want.  I would like to go off of the meds but am afraid to right now.  The doctor wants me to have a CBC urinalysis BUN and creatinine blood test to check my kidneys due to the meds.  We'll see. 

Guess I'm one of the lucky ones right now.  I'll keep you posted.  Good luck  and God bless!

Welcome to the crapest club on the Internet !

I agree with looking into rectal meds. They seem to help a lot for most. When it comes to diet I have noticed no changes. So I pretty much eat whatever I want.

Why are you so eager to jump off the medication?

I have seen that most UCers stick with the low fiber diet. Although, most also have issues with chronic diarrhea. If I don't eat an absolute TON of fiber, I won't go to the bathroom for a week. After altering my diet, I have FINALLY FINALLY gotten myself into a pretty regular routine. (for the first time in many, many years!) Just something to try. My doctor also told me that "most" UCers go with low-fiber, but she also said "its different for everyone." I've definitely found that to be true!

Also, I TOTALLY hear you. I really hate medication and am very concerned about long-term side effects. :-/ I still haven't accepted the fact that I have to take it every day. Unfortunately, it really has helped me so far. I'm in the same boat as you!

hi tchr

Constipation is an indication of inflammation for us UC'ers, just like D (diarrhea). Diet and meds can really help lower the inflammation and mesalamine enemas (like Rowasa) reach lowest inflamed areas that are hardest to treat.

Your first post mentioned going dairy-free, gluten-free and fiber-free and you thought it was hell. Why?

Fiber is controversial. Some need it and others think it hurts them. Spinach is one of the more tolerated fiber foods and many (including me) have it daily with a small amount of sunflower seeds.

Gluten-free? You will have to discover for yourself whether that helps you. It helped me, no question.
The diet that got me into remission is no grain (which covers gluten-free and more), no dairy, no starchy veggies and low sugar (honey only). Yes it is a radical change from what many people eat daily but I have my health restored now.

Like you I take Balsalazide. After healing this past year and a half I tried cutting back from 9 to 6 tabs daily and found that didn't help so I believe Balsalazide is a benefit without side effects for me.

Like you I am 50-something (56) but don't feel old.

Anyway, good luck on your path to healing. Only you can do it by keeping a journal and finding what foods and supplements work best for you.

Thanks for the kind words! I figure I may as well be as educated as I can on this matter since it is something unlikely to go away. (which is why i often browse this forum- unbelievable how much you can learn from everyone's different stories.)

Fiber does irritate the colon, yes, since our colons are very inflamed! For those without IBD, high-fiber diets actually help prevent colon cancer. For me, I honestly HAVE to eat or I will be miserable. There are foods that you can choose that are high in fiber that may be less irritating to your colon. Imagardener2 mentioned spinach! Very good, high in fiber. Cooking it will aid in digestion. You can also try high-fiber, "smoother" foods like pea soup!? Yum. I have been trying the gluten-free diet for about 5 or 6 months now. I have found it more difficult to find things that are high in fiber (since most whole grains are limited, but I still eat brown rice and even gluten-free oats). Many people in my family have a gluten 'sensitivity,' which is why I decided to try it out. Since I began the diet at about the same time as I began my medicine regime, I'm not entirely sure which is helping me more. (woops, perhaps i should have planned that out a little better.) Either way, most of my days are great, so I'm a tad worried to go back to anything else!

The vitamins I take for a few reasons. If you go gluten-free, you loss most of the nutrients that are added into most breads and grains that are an integral part of your diet. (I take a multi-vitamin to cover this, but forgot to list it.) Fish oil has been proven to reduce inflammation, and there have been several studies with its effect on IBD. However, a lot of people with diarrhea have an issue with it exacerbating the problem. I guess that's not something you and I are worried about at this point. Vitamin D is very important for people with autoimmune disorders, Im a huge advocate. I think a lot of people are deficient! My mother is also pressuring me to take magnesium because of its benefits, but i have been busy with school and have not had time to thoroughly research it quite yet.

Anyways, I suggest maybe trying the higher fiber. You can start out with things that may be easier on your gut. Cooked/steamed vegetables, etc. Fruit! Homemade oatmeal. You can get into a solid routine where you find foods that really appeal to you. However, if you do pursue the high-fiber diet, I would say make sure to start it slowly if you dont have a ton of it in your diet right now. It really will get things 'moving...' and if you eat too much right away I have found that you can feel your intestines "bubble." Furthermore, a key part of the high-fiber diet is DRINKING MORE WATER. If you don,t, you will only exacerbate the constipation issue, rather than help it out. So be sure to drink more water!

Anyways, maybe see if it helps. It will lower your cholesterol in the meantime! Which is also good. Anyways, hope this helped a bit. Good luck!

tchrmgr,
Welcome to this forum. Sorry to hear about your recent diagnosis, and I well understand your fears, given your father's diagnosis and life.

You've come to the right place, and will get lots of great input here, from the folks in the trenches who have suffered a great deal, and tried many different avenues of medications, diets, supplements.

I will tell you right off the bat that I am very biased towards what put me in remission: Transdermal LDN )low dose naltrexone) - and if you want you can read about it in this earlier post of mine: https://www.healingwell.com/community/default.aspx?f=38&m=2079694

If you have trouble with it and cannot access it, let me know and I'll repost it for you here.

I tried many conventional medications, including prednisone, without much relief. My doctor wanted to put me on the higher side effect ones (and expensive ones too), including Remicade and that's where I drew the line in the sand and said NO. I did my own research and found the LDN info, and figured with almost no side effects, why not? And I am so glad I did, because it works. Problem is you need to realise most doctors will NOT prescribe it to you. You have to get it from an alternative doctor, osteopath or someone like that and then get it from a compounding pharmacy.

My doctor also told me diet has no effect on UC. Suffice it to say, he's probably never had UC or he would know otherwise. Diet is a critical component in UC. Lots of folks here swear by SCD diet, and it is a good one. I follow that one too, but a little more liberally.

Supplements (another thing the doctor told me was of no value) are critical to UC too.

Here's where I would start: a good probiotic - I take VSL #3 - it's one made especially for UC people and contains 450 billion active cultures,

Slippery Elm Bark Powder - it helps coat the digestive tract, to me it's the equivalent of the mesalamine pills, Omega 3 or Krill Oil supplements, Vitamin D3 - you should get your levels checked because many IBD people have inadequate levels, L-Glutamine powder added to protein shakes - 15 grams - that's the dosage I take and it's important for colonic repair, drink lots and lots of good water and cut out all forms of soda as they create havoc for UC, get on some good liquid mineral and vitamin supplements ( I have some links to products I take if you need them) for easy absorption, and although I usually advise people to stay away from caffeine as it's a stimulant and could promote more movement in the colon than you would want - in your case, you may want to add a little caffeine to help you go more regularly.

Hope this helps. If you have any questions, feel free to ask.