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Crohn's Disease
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Posted 6/21/2013 12:22 AM (GMT 0)
hello all,

I found this thread while searching for appropriate diets for colitis/crohns disease. I was dx in 1995 with ulcerative colitis. I had 2 very minor flares that were controlled with salofalk suppositories. then in 2007 after 5 very stressful years I came down with a very serious flare that took 4 yrs to get under control and I have ended up with a tremendous amount of daily medication, asacol, methotrexate, folic acid, ect ect ect......I am not happy with the amount of medication I am on but have accepted the fact that it is helping control this disease.

recently another flare started from out of nowhere. it was atypical of any other flare I have had. it came on very fast, bleeding started within 2 weeks, severe cramping but no loose stools, no diarrhea, dull back ache, fatigue, weakness,...gi I have had throughout this disease is very proactive and straightforward, we have a great relationship, I trust her literally with my health! couldn't say that about other drs I have had. she did a colonoscopy yesterday and she said I have active disease in sigmoid and ascending colon with only patches of disease in between, she is querying whether I have crohns  as opposed to colitis!  shakehead   shocked . WHAT??? she said she has  wondered this for a couple years and when she has sent biopsies in to pathology she has asked them whether they think it is indicative of crohns? pathology has always come back saying its ulcerative colitis.

I m noticing this time that I can't seem to eat anything without cramping and agony. today I am have loose stools for the first time.

there are so many diets out there that I don't know where to start. right now all I can handle is clear fluid diet. I have always been able to eat whatever I wanted too but this time is different. can someone point me in a direction of which diet to try. what are some food that are easy on the digestive system that are nutrient rich as well. HELP please !!!

thanks so much !

Posted 6/21/2013 1:13 AM (GMT 0)
If you're experiencing flare up symptoms, you might want to try a low residue diet until things calm down.

Unfortunately, it's not really a diet that's rich in nutrients. Once you get feeling better then you can introduce some more nutritious food choices.

Posted 6/21/2013 5:28 AM (GMT 0)
Hi and Welcome to HealingWell, I agree with 73monte go with a
low res diet also you can drink ensure or boost that helps and
also make sure you drink a lot of water so you don't dyhdrate.
Posted 6/21/2013 1:04 PM (GMT 0)
Diet is very personal. What works for one, may not work for another. So while the previous advice might be right, I would not drink that stuff. Scientific studies show that it can put some in remission, but the reason I would not go that path is that it is not sustainable. What do you do after things calm down?

Please take a look at the Specific Carbohydrate Introduction Diet. It is very healing and designed to get things under control. It is a very small number of foods for 3 or 4 days. Once things get under control, it outlines what to introduce to continue healing.The following link is to the SCD wiki and provides some base level information for your consideration.

http://scdwiki.com/index.php?title=Beginner%27s_Corner

Again, I am not saying anyone is wrong, just that I have a different opinion
Healing thoughts
dave
Posted 6/21/2013 1:10 PM (GMT 0)
I was diagnosed in 2007 with CD in the colon after having two massive rectal fistulas.  I have been on the SCD diet since 2007 and taking pentassa and both my fistulas healed up within 8 months after starting the diet, and I have been sympton free since 2007. I suggest reading the book "breaking the vicious cycle" which goes into detail about the SCD diet.

Post Edited (NY-Sooner) : 6/25/2013 5:20:30 AM (GMT-6)

Posted 6/21/2013 4:12 PM (GMT 0)
wow, thanks so much for your words of wisdom. It is so comforting to know there are others out there who are/have lived through what I am experiencing and are so supportive and encouraging! I realize that diet is very personal. While I have seen Elaines book before, I have also came across a book written by a dietician who also has UC. Its called What to Eat with IBD by Tracie Delassandro. I have learned a lot from her in the few pages I have read. The book however I believe deals more with what to eat during a flare up to maximize nutrition and soothe the bowel and not a long term diet. Again I have only read a few pages. I have heard about Elaine s book and the SCD. I will have to check it out of the library and see if it is something I can actually do ! I am shocked at this flare and how severe the cramping has been which has me concerned. Does anyone know if decaf coffee is a stimulant like regular coffee? I LOVE LOVE LOVE my morning cup of coffee but yesterday it caused such sever cramping I was doubled over in pain for over an hour. Nothing is worth that kind of pain!
Again thank you for your support and words of wisdom, you are all very appreciated!
Posted 6/21/2013 4:19 PM (GMT 0)
PS I should add that the gi dr told me that during the scope 2 days ago, my sm bowel looks completely normal, no disease there whatsoever!? I thought crohns affected sm bowel ? If mine is normal why would she think I have crohns? Can crohns affect ONLY the colon? I am confused???
Posted 6/21/2013 4:29 PM (GMT 0)
during a colonoscopy, the GI may be able to visually assess the terminal ileum, which is the last foot or so of the small bowel. The scope cannot visualize any other part of the small bowel, which is about 22 feet long. So you should understand your GI's comment to refer to the terminal ileum and nothing else.

about 80% of people with Crohn's will have inflammation in the terminal ileum. That means 20% of people with Crohn's don't have inflammation in the TI. A small percentage of people with Crohn's have inflammation in the small bowel only, and these people have difficulty getting a solid diagnosis because it is really hard to scope the small bowel (recent advances include something called the double balloon endoscopy, which some forum members have had). Another option is to swallow a pill camera, which can provide images of the small bowel (but not biopsies).
Posted 6/22/2013 2:33 PM (GMT 0)
I had Crohns in both the colon and small bowel had surgery on both x
Posted 6/22/2013 6:57 PM (GMT 0)
I was diagnosed with Crohn's disease in 2005. The difference between Crohns and UC are a few. With UC I've heard only the colon is affected and it is always in one continuous section. Crohns can cause problems from your mouth all the way through. Crohns tends to have areas of healthy bowel and areas of unhealthy bowel in skipped areas. Also UC is limited to the lining of the intestine where as with crohns the inflamation can go all the way through the intestine. I think your GI is questioning Crohns versus UC because you have areas of healthy bowel in between areas of inflammation. My best guess. I hope you get an answer soon. Though both are IBD so treatments would be about the same I'm assuming.
Posted 6/22/2013 7:37 PM (GMT 0)
about 20% of people with Crohn's have Crohn's only in the colon. It was once thought that Crohn's couldn't affect the large bowel, but that was a long time ago and doctors certainly don't believe that anymore.

There are enough differences between UC and Crohn's colitis that doctors can usually distinguish the two, but not always. Sometimes there are features of both diseases and the docs can't decide which is which. In such a situation, they will probably describe it as indeterminate colitis or IBD - Inflammatory Bowel Disease.

Many indeterminate cases end up being 'upgraded' to Crohn's. If there is doubt over a diagnosis, it is more likely to turn out to be Crohn's in the future than UC.
Posted 6/28/2013 1:51 AM (GMT 0)
cry  Hello everyone,

thanks for helping understand the difference between these 2 diseases. Unfortunately my flare went from mild to severe after the colonoscopy! First I was awake for the majority of the scope-PAINFUL TO SAY THE LEAST- and then the pain and diarrhea just got worse and worse. By Saturday (3 days post scope) I was in constant pain and had 20 liquid bowel movements in 3 hrs. My husband took me to Emergency and I was admitted immediately due to dehydration. 4 days later after the addition of Prednisone, IV hydration, IV morphine as well as total bowel rest, I am now home.

I am baffled, I have  never once had any kind of complication post scope. I have now been put on a low residue diet and am very slowly able to tolerate small amounts of food. I am still having frequent bowel movements but not like on the weekend. I have also been referred to a dietician.

I saw my family physician today who has me off work for at least 2 weeks or until I see my GI again.(who went on holidays after the scope and has no idea what has transpired)

Has anyone else has any similar experiences. This flare is totally atypical for me!

Thanks everyone for helping me makes sense of this ! confused

Posted 6/28/2013 2:42 AM (GMT 0)
Wow, it actually sounds like my typical flare - over 20 BMs a day, usually tons of blood and mucous along with it, tons of pain and cramping. I spent two months like that before I got diagnosed, then it's happened several times since then, each time I flare. I'm sorry for what you're going through, it's just hard. :(
Posted 6/28/2013 3:10 AM (GMT 0)
I have previously had 20 bms day , blood, mucous, lots of pain during a flare 6yrsago but that didnt occur until I had been sick for over a month. What is atypical this time is the very rapid progression in which it occurred ( 3 days)

I find this very scary and alarming. Cant see my gi until next week. Have any of you had a flare progress this quickly to this severity before?
Posted 6/29/2013 3:41 PM (GMT 0)
Well so far not so good, yesterday was a bad day. 10+ BMs with blood. I am exhausted; the fatigue is overwhelming! I am sticking to a low residue diet and am eating very sm amounts at a time but it still results in too many bms. I am discouraged and am in constant pain but my GP doesn't want to give me pain meds because he dosent want me to get addicted.....I think I may need to educate him a bit more.
HELP......
Posted 6/29/2013 9:58 PM (GMT 0)
Have you had your stools tested for infections? Lots of us with Crohn's get bacterial overgrowth which results in infections like c.difficile or colitis. You may need antibiotics to get this under control. I suggest you call your GI on Monday. Pain meds only help pain, they don't get to the source of the problem.
Posted 6/29/2013 10:00 PM (GMT 0)
oops, I meant e.coli or salmonella, not colitis:)
Posted 6/29/2013 10:07 PM (GMT 0)
Tested last week, no infections, jusst feel sooo dicscouraged . How long does predisone take to work
Texting on my phone sorry for typos.
Posted 7/1/2013 2:02 AM (GMT 0)
I would expect the prednisone to kick in soon, if not, I would suspect another cause for all your D. Stool samples can come back false negative, so keep that in mind. I am currently going thru an awful flare and just got out of a 5 day hospital stay with a suspected abscess, so I feel your pain. I am heading to the Cleveland Clinic Tuesday since my GI seems a little stumped. You may want to consider a second opinion as well. Good luck, it will get better!
Posted 7/1/2013 2:13 AM (GMT 0)
Usually, pred is the fastest working drug in inflammatory diseases. So it shouldn't take long.

GPs and GIs are often not good with pain killers... If you had joint pain too, a neuro or a reumy could certainly help you.
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