New here, but not new to GI issues. I'm in bad shape...HELP please!

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littlelymie19
New Member


Date Joined May 2008
Total Posts : 10
   Posted 4/4/2009 8:32 AM (GMT -7)   
Hi Everyone,

I hope you all are well.

I've been dealing with an undefined "inflammatory bowel disease" for almost 4 years now. In the beginning of the onset of the disease, I was 140 pounds. I was constipated though all the time, and got to the point where I could barely eat because my intestines were so full (I only went to the bathroom once a month). Conventional doctors just kept telling me to eat more fiber and drink more water, so I found a doctor who practices alternative medicine and he got my bowels moving finally with oxygenated magnesium, but then my weight began to drop quickly. I fell all the way to 84 pounds at 5'7 and was hospitalized. That's when I tested positive for Crohn's/Inflammatory bowel in a blood test.

Unfortunately though, in the hospital they did a colonoscopy and and found a ton of inflammation, but nothing specific to Crohn's, so they didn't really diagnose me with anything and they sent me home.

I was eventually able to regulate my bowels with diet and the oxygenated magnesium where I didn't have diarrhea 8 times a day, but I also wasn't constipated for a month. Unfortunately though, my diet became very limited. The only foods my body can digest without getting inflamed are primarily vegan, gluten free, and fat free. I can only eat beans, some veggies, sweet potatoes, some fruits, brown rice (cooked to death)...etc..

Right now I have no animal protein in my diet, because when I eat it, it just comes out whole. The only fat I have is 2 oz of avocado because anything more than that constipates me for a week. Gluten and dairy gives me weird diarrhea that is difficult to push out due to inflammation (sorry if that's TMI!).

So here's the problem: I believe I'm malnourished, and unfortunately over the past two days the diarrhea is back and my weight has fallen to 100 pounds at 5'7. This means that my BMI is 16. AHHHH....I'm terrified for my organs. I'm short of breath and my heart races when I stand up. I think I may have a stomach virus, hence the reason for the random diarrhea and extreme nausea, but because of the IBD my body can't handle this.

So I guess I'm just asking for advice. Does anyone have extreme constipation, or extreme food sensitivities? Anyone know of a med or a weight gain shake that helped or helps either of those things? Thanks so much for reading this. I'd appreciate any input that you may have!

Post Edited (littlelymie19) : 4/4/2009 11:04:48 AM (GMT-6)


gachrons
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Date Joined Mar 2007
Total Posts : 4527
   Posted 4/4/2009 11:02 AM (GMT -7)   
Hi I guess one of the important things is to keep the electrolites up so maybe try to get some at the drug store I used ensure and liked boost for helping to maintainn weight and vitamins when I was at my worst.. protein in fish is good also and in powered milk..you did not say what meds you are on as with that much inflamation going on you will probably do better when it is in better control..for constipation I whip up a can of pears in the blender that is easy to digest... hope you feel better soon... lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail
"Blessed are those that can give without remembering and recieve without forgetting ~Aurthor Unknown~


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 4/4/2009 11:45 AM (GMT -7)   
Hello,

Sounds like you could still have a lot of inflammation. What medications are you on?
Diagnosed with rectal Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


Keeper
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Date Joined Jun 2008
Total Posts : 1058
   Posted 4/4/2009 11:56 AM (GMT -7)   
You fat intolerance sounds a bit like a spleen or liver problem. Ask your doctor to test you for Celiac disease (can cause spleen inflammation). On second thought, if you have been off gluten for a while, it might not show anything.
It might also be pancreatitis - usually connected to Crohn's or a similar problem. The liver connection is mentioned here: Wikipedia

Post Edited (Keeper) : 4/4/2009 2:18:35 PM (GMT-6)


littlelymie19
New Member


Date Joined May 2008
Total Posts : 10
   Posted 4/4/2009 1:28 PM (GMT -7)   
Thanks for your input you guys.

gachrons- Thanks for your suggestions. Unfortunately I am allergic or sensitive to most things in electrolyte drinks, boost, and ensure. I am allergic to dairy/milk. I do take vitamins though, a boatload! So that's good.

Keeper- I do have liver, spleen and gall bladder problems as well due to chronic lyme disease. The doctors are also pretty sure that I have Celiac disease but I won't go back on gluten to do the tests. At this point, my body can't handle it and it doesn't matter because I'm completely gluten free anyway. Pancreatitis is also a thought...I have to look into that, thank you!

I'm not on any medication at all right now. I haven't found a doctor yet who knows how to deal with someone with IBD, malabsorption, malnutrition, and constipation. Is there a website out there that lists good IBD/Crohn's doctors?

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 4/4/2009 1:57 PM (GMT -7)   
lists doctors who are reviewed by their peers but you do need to subscribe:
 

to find the best hospitals for GI disorders, you can check out the ranking from usnews, by clicking onto the link below. the top seven are:

Mayo Clinic, Rochester, Minn.
Rochester , MN 57.0 100.0
2 Cleveland Clinic
Cleveland , OH 34.3 65.1
3 Johns Hopkins Hospital, Baltimore
Baltimore , MD 29.1 62.6
4 Massachusetts General Hospital, Boston
Boston , MA 22.1 51.5
5 Ronald Reagan UCLA Medical Center, Los Angeles
Los Angeles , CA 15.6 42.8
6 University of Chicago Medical Center
Chicago , IL 14.4 40.1
7 Mount Sinai Medical Center, New York
http://www.usnews.com/directories/hospitals/index_html/specialty+IHQGAST/
Daughter (21) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress. No symptoms for the past few years. Recent colonoscopy shows stricture gone but still two spots of inflammation in TI. On Entocort since April 06. Never had D. SCD multivitamin, homemade yogurt, 2000IU vitamin D3, 900+ mg calcium, 25 mg iron, occasional B12 shots, fish oil capsules. SCD diet modified to include potatoes and rice. 


farmacist
New Member


Date Joined Mar 2009
Total Posts : 18
   Posted 4/4/2009 2:51 PM (GMT -7)   
It sounds to me like it is time for you to pick a new doctor, let them do repeat colonoscopy, biopsy, and antibody tests. With that info they can make a diagnosis and get you on the right medications. At that time you can then re-start your food allergy tests to see what you can eat while on the new medications. You need to make this hard decision to trust your doctor to help you to find new ways to treat this. Only You can do it.
Old 72 yr old man diagnosed 11-08 with Crohn's. Take Colazal, Pred 30mg, 6MP 75mg, and received 1st dose Remicade 3-27-09. Waiting for 1st remission soon.


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 4/4/2009 3:03 PM (GMT -7)   
I agree that you should get a second opinion at a really good teachnig hospital. The ones Njmom listed are great choices. Also the CCFA website gives doctors who claim they know CD -- www.ccfa.org I had really good success with the CCFA list.

Meds may help calm down the inflammation, which is more than likely one of the root issues causing your problems. I agree with Farmacist about letting a good doctor start at square one and work through to a solution. It will take time and may not be pleasant, but you may very well end up much, much better than where you are now.

Take care!
Diagnosed with rectal Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 4/4/2009 9:53 PM (GMT -7)   
It sounds like you need some FOOD! You should try some protein power, but only a hydrolyzed protein that needs no digesting. Milk protein from milk protein isolate should be tolerable, even with a milk sensitivity. Otherwise try a soy protein. Rice protein is not very well balanced. You also need some fatty acids, but since it seems that you are not digesting oils, you need either oils and enzymes (lipase) or the free fatty acids. There are some enteral nutrition formulas that may fit your needs, but you would have to do some research into that or get advice from a knowledgeable nutritionist.
I don't know what vitamins you take, but recent research shows that vitamin D deficiency is implicated in the development of multiple auto-immune diseases including MS, lupus, Crohn's, arthritis and others, so you should try taking at least 2000 IU of vitamin D3 daily and possibly more - or get 10 - 20 minutes of full-body sun after noon. The sun bath would provide about 10,000 IU of vitamin D, assuming that you live where there is a UV rating at this time of year.

littlelymie19
New Member


Date Joined May 2008
Total Posts : 10
   Posted 4/5/2009 1:22 PM (GMT -7)   
Thank you Njmom, those links were helpful. Does anyone else have any links to resources for people with Crohn's/IBD, especially those in search of a doctor/treatment?

I think you're right farmacist. For so long my focus was alternative medicine and infectious disease that I seemed to have neglected the fact that I do have an inflammatory bowel disease that hasn't been dealt with or even properly diagnosed. Now it's screaming for attention!

Fallcolors, your link was helpful too. I definitely want to go down the "teaching hospital" road. My insurance may cover a trip to Stanford...I wonder if they are good in these particular situations...

Keep, I agree!!! I don't do well with whey protein/milk protein powder...so I ordered fish protein capsules, Seacure, and I'm waiting for them to come in the mail. In the meantime I'm trying to re-introduce turkey and fish into my diet, and of course I'm eating them with a ton of digestive enzymes. It's not exactly going very well.

Since I've been on the whole alternative medicine kick for so long, honestly I'm kind of scared of steroids and medications. I'm not even sure if they would make the constipation issue worse or not. Does anyone here deal with the constipation? That has been primarily my issue (despite these rare bouts of diarrhea like the one im in now), and it is pretty severe. I'm just always afraid these types of meds will make it worse.

Thanks for the input everyone! If there's any other websites or message boards anyone can recommend, that'd be much appreciated!

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 4/6/2009 4:03 PM (GMT -7)   
Hi We all are reluctant to start meds and sometimes it is a start to better health that we cain't afford not to take... hope you find a good DR... lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail
"Blessed are those that can give without remembering and recieve without forgetting ~Aurthor Unknown~


Lizard99
Regular Member


Date Joined Apr 2006
Total Posts : 192
   Posted 4/6/2009 4:11 PM (GMT -7)   
Have you tried juicing or blending to get in some greens? They are a good source of proteins and electrolytes. It helps me out a ton. Everyone's different though, and some sensitive. But it makes me feel good to know that I am getting awesome nutrients without any effort.

Reacher
New Member


Date Joined Apr 2009
Total Posts : 8
   Posted 4/7/2009 5:09 AM (GMT -7)   

I too have extreme constipation. I don't even know what a good bowel movement feels like anymore. I am tense all the time. I am suffering from hypertension which further worsens my condition.

Were you exagerrating or did you really go one month without a bowel movement. However, I know the feeling. I too am eating primarily fruits and vegetables and less of anything else. But it doesn't help much and I still am suffering from pain and irratation in the rectum. I have abused myself with laxatives a lot so I guess that has done its damage.

They say prune juice helps. Some people say Aloe Vera helps but it is not just any Aloe Vera but a specially formulated one. It is how the Aloe Vera is prepared which makes it effective. Prune juice helped me a bit but the Aloe Vera I had did not do much. I guess I must find out which is the best form of Aloe Vera to take.  confused  

:-)  Hope this has helped you at least a little.

 


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 4/7/2009 7:31 AM (GMT -7)   

My daughter never had D, except sometimes when on antibiotics, but did have constipation. The homemade yoghurt, following the SCD recipe (cultured about 30 hours), seemed to do the following:

- eliminate antibiotic-associated diarrhea

- eliminate constipation

- improve immune system

- reduce abdominal sounds from her stricture

It might sound odd that yoghurt can eliminate constipation AND diarrhea...the reason is because it helps to regulate the intestinal flora, bringing good bacteria into the right balance. Due to the long fermentation period, the lactosein the yoghurt is pretty much eliminated, so it should help those who are lactose-intolerant.


littlelymie19
New Member


Date Joined May 2008
Total Posts : 10
   Posted 4/7/2009 7:52 AM (GMT -7)   
Lizard, it's nice to meet another juicer! :) I love juicing my greens. We're doing so much for our bodies!

Reacher, thank you SO much for telling me about your struggle- it is very similar to mine. Are you able to use magnesium? That's the ONLY thing that helps me. Have your doctors put you on meds, and have any of them helped? Did they formally diagnose you with Crohn's? I'd love to hear more about your story.

Crohnie4now, thank you for telling me about your weight. I am so sorry that you've lost so much, but it does comfort me that you are my size and you are ALIVE! I'm down to 97 pounds now :( What are the doctors doing for you? Do you have other health problems due to your weight, like heart problems and such? I hope that you gain some soon. Big hugs to you, from another person who is just skin and bones.

Njmom, I've been considering SCD! Do you guys follow the whole diet? I can't tolerate dairy at all, it makes my constipation worse, and I can't tolerate fats and proteins very well, but I'm wondering if I followed SCD strictly if that would change and my body would actually be able to digest the things that it can't normally.

I had an awful morning this morning :( My whole pelvis is BURNING!! Does anyone get burning, especially on the right side by your hip? It's so alarming. Then I finally went to the bathroom and there was black streaks :( Sorry for all of the gushy details. lol! Just wondering if anyone can relate. I'm going BACK to the doctor today. They haven't been helpful at all so far! But I'm crossing my fingers that I'll get a good PCP today that can direct me in the right direction.

Reacher
New Member


Date Joined Apr 2009
Total Posts : 8
   Posted 4/7/2009 8:39 AM (GMT -7)   
Crohnie4now, I am in the same boat. 5' 10" and about 105 to 110 pounds. And I am really afraid of losing more weight.

Reacher
New Member


Date Joined Apr 2009
Total Posts : 8
   Posted 4/7/2009 9:16 AM (GMT -7)   
littlelymie19, when you mentioned the weird diarrohea I knew exactly what you mean. It may be classified as diarrohea but its certainly not easy to push out due to our problem. I will try magnesium to see if it helps. Sometimes taking fruits in the morning could help in aiding a bowel motion. I guess the type of fruits varies from person to person depending upon their preference. But I heard that if you take papaya in the night it could help you in the morning. Also, it may not be available everywhere.
 
My weight to height ratio is very similar to yours. I'm 5' 10" and about 105 to 110 pounds. As I wrote in an earlier post I am really afraid of losing any more weight. I weighed about 145 to 150 pounds about 10 years back. Then about 5 to 6 years ago my weight dropped to 130 to 135 pounds. Now in the last few months my weight has become a scary 105 to 110 pounds.
 
My condition has worsened because I am unable to get a bowel motion without the use of laxatives. Sometimes even after using laxatives I do not get a bowel motion.
 
But even though prune juice and Aloe Vera doesn't help me (since my condition has worsened) it might help you. And if papaya is available where you live you could even try that. The advantage of eating a papaya is that it would be fresh vs prune juice which would not be fresh. However, prune juice has a proven effect and papaya may not work as well. However, if papaya is available no harm in trying it out. Aloe vera would have to be properly made and formulated. If you are lucky enough to get this type of Aloe Vera it could help you.
 
Wish you all the best. Keep on writing and letting me know how you are doing. :-)
 

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 4/7/2009 8:07 PM (GMT -7)   
Sorry to hear you are having so much trouble. I have a non specific colitis as well and was constipted until they put me on colazal for inflammation. Sometimes the inflammation can cause constipation. My inflammation was in the sigmoid colon. I didn't loose weight though but can have a lot of bowel activity. Have you tried probiotics? Also, perhaps a visit with a registered dietician could help with the foods you could tolerate. I also agree with the others to find a Dr. who will give you some meds. In the meantime, eat what you can tolerate. Good luck and God Bless. Will keep you in thoughts and prayers that you get well.
diagnosed 1/09 with colitis,54 yo, colazal, fish oil, synthroid, cymbalta


njmom
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Date Joined Apr 2006
Total Posts : 1884
   Posted 4/8/2009 11:55 AM (GMT -7)   

littlelymie19, the SCD diet is strict - we don't follow it with strict adherence...added potatoes and rice...maybe this is one reason that in spite of substantial improvement (stricture vanished), we still see spots of inflammation on the colonoscopy.

SCD is really healthy, and has completely changed our way of eating, so she will never go back to the crap she used to eat. Now, we are trying to decide whether it is worthwhile to give strict SCD another try. Because she has no symptoms right now, it would be hard to tell whether it is working...

Fluid milk is not allowed on the SCD, but homemade yogurt and certain aged cheeses are OK. The website www.breakingtheviciouscycle.info provides the best info about it. Also, the book "Breaking the Vicious Cycle" provides detailed instructions.


medicalmystery
Regular Member


Date Joined Apr 2009
Total Posts : 45
   Posted 4/9/2009 8:26 PM (GMT -7)   
littlelymie...i scanned the posts but not a full read of all of them....so apologies if this is a repeat..

there is a company in san diego called promethius, i think, that does a blood test for celiac....so you don't have to ingest gluten

Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 4/10/2009 9:47 AM (GMT -7)   
Unless Promethius does a new kind of test, blood tests for celiac won't show anything if you have not had exposure to gluten recently. I was told that I should eat wheat again for a few days - 5 or 6 I think. After a negative blood test, my Naturopath told me that the time was too short to show any result in the blood test. In my particular case, I tried a breakfast cereal with bran added as well as white bread. I only tried the cereal twice because it caused pain both times, but eating the bread did not seem to be a problem. But then it may not have had the time needed to trigger the response. I had not eaten any wheat for about 6 years at that point.
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