I hope somebody can help me

[Snomir]

I hope somebody can help me,
due to lower back problems and pain, for which I have had MRI done my doctor advised me to make a colonoscopy, because it kinda hurts under the right rib and he could not see anything wrong on spine MRI and abdominal ultrasound. Colonoscopy showed a couple of tiny ulcers in terminal ileum. My doctor has said that it it is a typical image of mild Crohns. Biopsy says Noninfectious gastroenteritis and colitis (lymphocitic infiltrate found in ulcers), unspecified. I also did CRP and SED rate, which came normal. My calprotiectin levels are below 30, which is more than good and it prevented my doctor to give me a diagnosis of mild Crohns. However, he has put me on Pentasa and Budosan. Since I have loose stools (only one daily) for almost ten years and occasional stomach problems without proven gastritis, I am wondering if I have had this (whatever it could be) for ten years now? Is there anybody with the same or similar story? BTW, Pentasa did help me on the 2nd day, now I have normal looking stools after 10 years and less pain.

 

[Aos]

I am not in the same boat as you, but I did have lower back pain, right above my hip and below my right rib cage (on back side). I found no cause and was sent all around looking for one, eventually it just got better after about 2 months :/ **** happens like that with Crohn's. Not sure if that was really the cause or something else entirely. How long have you had this pain? I'm sorta surprised a doctor would prescribe the mesalamine w/o more symptoms. Not that I am qualified to say, but the drugs I feel would cause you more grief than the very mild crohn's. I personally would do my best effort to eat an anti-inflammatory diet and make do with that to keep it at bay naturally since you are in the position do so. But that is my goal, to live drug free by diet - it can be done but takes practice to learn your foods. My sister had severe crohn's and is now drug free by diet. Though drugs are useful for assistance to get to that point in life.

However if the drugs are making for less pain and better stools, then that could very well be the reason for your pain (gas and ulcers cause pain in a lot of places we wouldn't expect).

Sorry if not much help, hope you feel better though!

 

[Snomir]

Hi,
thank you for answering. I went to No1 gastro doctor in my country to get the 2nd opinion. He has no idea what it could be. He has said that it looks like a mild Crohn's disease, but my SED, CRP and calprotectin are normal. He ordered x ray small bowel barium test, endo capsule and some bloodwork for me. I have already had a celiac test, it came out negative. My stool is normal, and I do not think that Budosan helps me. I have a gastric issue, no appetite and I crave for sugary food only. I am tipically a meat and salad person, but each time this stomach issue happens to me I feel disgusted by meat and veggies. I did a series of gastroscopies, they never found inflammation (once only mild and I could not eat at all. It is all really weird. What type of diet do you use?

 

[Snomir]

I forgot to say, my back pain went away. It was definately related to my intestines, but the 2nd doctor thinks I might have a functional stomach and bowel disorder which has caused that, because the TI spot for me is not sore at all.

 

[DustyKat]

Mesalamine is an entry level drug and pretty much inoffensive as far as drugs for IBD go. It is also questionable as to its value when used for Crohn’s but that said it does work for some people with mild disease and it works well for them. Budosan I assume is Budesonide which is a more topical type of steroid that is used in Ileal Crohn’s.

There are those with mild Crohn’s that have no symptoms to speak of and in those cases it is possible that a no drug treatment path is decided on by the doctor but it would be unusual to take no action when symptoms are present as they are in your case.

It is good to hear that the drugs are alleviating your symptoms and I hope it continues that way. In the longer term though it would be advisable to keep your finger in the pulse and document any symptoms that keep cropping up as the diagnosis isn’t really definitive.
Have a look at the diary in the wiki for suggestions to what you may want to keep an eye on….

http://www.crohnsforum.com/wiki/Diary-Inclusions

Good luck!

Dusty. xxx

 

[Snomir]

Thank you for all your help! I definately have symptoms, but they are not usual for CD patients. Pentasa helps me so much that I would rather take 4 caps a day without budesonide (I think it is Entcort in US), than this therapy I was given (2 x pentasa, 1 x budosan). My stools are completely normal and the only thing that bothers me is a lack of appetite. I feel like eating cakes only, but since it is a NO food, I eat bananas. Today I bought Ensure. It is ok, gave me energy. I also ordered Endorphinate from iHerb, as an alternative to LDN. Will let you know how it works!