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Newly diagnosed, how to cope until I see gastroenterologist?

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Posted 1/31/2012 3:37 AM (GMT 0)
Just got the news today that I have crohns, normally I would have been more upset about this diagnosis, but they also ran a test for carcinoid cancer, due to the fact I have been experiencing severe flushing( face/whites of eyes, arms and chest become blood red) and VERY rapid heartrate up to almost 200 BPM at times with severe cramping, followed by explosive diarrhea.  By far my worse episode of this was about 10 days ago, had the pain, flushing, rapid heart rate, followed by 24 hours of severe abd pain and passing nothing but blood every hour or so.  They did colonoscopy and made it to 45 cm when they found severe circumfirential ulcerations with severe narrowing, and had to stop there, it was too narrow, and too dangerous to try to go beyond this point. 

I just finished a round of flagyl, I am not bledding at all anymore, but I am still having quite a bit of pain.  They have arranged for me to see a gastroenterologist in St Louis, but my appointment isnt until Feb 21.  Wondering about coping until then.  Any advice?  Anyone else had these flushing symptoms with crohns?  They are still wanting to investigate that further.

THanks

Kim

Posted 1/31/2012 5:13 AM (GMT 0)
sounds like a terrible experiance.... i hope you find some way of coping until the 21st.....stay strong..
Posted 1/31/2012 1:36 PM (GMT 0)
Ow! I'd stay on a liquid, puree, soft, bland diet until your appointment. And try to avoid gluten and maybe even dairy. Moreso gluten than dairy tho.


(((hugs)))
Posted 1/31/2012 1:51 PM (GMT 0)
Hi Kim,sorry to hear you're having such a hard time, hang tough the 21st will soon come around, Re-flushing etc, i had started the menopause round about the time i was DX with Crohns, the symtons of which were made worse by my having Crohn's,you don't say your age so maybe this is something you could rule out? wishing you all the best,Slainte
Posted 1/31/2012 3:01 PM (GMT 0)
It seems like the diagnosing DR should have gotten you on prednisone to help reduce that inflammation quickly. I would call them up right away and make sure you understand what the treatment plan is from now until 2/21. There is no need for you to continue suffering like this for 3 more weeks.
Posted 1/31/2012 5:04 PM (GMT 0)
Hi Kim, I was diagnosed with CD late last year... and I too get those symptoms - severe flushing( face/whites of eyes, arms and chest become blood red) and VERY rapid heartrate - its usually followed by diarrhea but not the bleeding. I don't think I have really ever had a problem with bleeding. My CD is in my terminal ileum and it's very strictured and ulcerated. My consultant did think I had a cancerous tumour when he first saw it all during a colonoscopy, but the biopsies showed otherwise. It was genuinely a relief that it was Crohn's. Strange how we feel that.

I actually have never asked my doc about these symptoms... i have had IBS for 18 years, and when I started getting these turns described about I actually assumed it was IBS. So perhaps it is Crohn's related. I will ask at my next appointment!! It is very scary... I remember thinking I was going to die when it first happened.

I agree with kazbern. Starting you on Pred immediately would really help with the pain. My doc started me on it as soon as he saw my bowel, even before he had the results, to try and ease the discomfort. It took a week or so to kick in, but it really did help. I guess it does not really help with the bouts of flushing etc for me as I still have them, although not too frequently.

I'm now trying to taper off Pred and am nearly on week 12 of Azathioprine 100mg.... so its still early in my treatment. I am hoping the Aza kicks in soon and makes me feel as well as the Pred! Time will tell.....

I really hope you get some treatment for your symptoms soon.... and if you discover the cause of the flushing etc then let me know!!

Take care, GP x
Posted 2/1/2012 3:06 AM (GMT 0)
GP...

Hate that you have the flushing and heart pounding...It also scares me, my internal med Dr thinks its due to the narrowing in the descending colon causing the bowel before that to become very distended (like a partial bowel obstruction) and that is causing my body to release some hormones causing the flushing and racing heart.

My regular doctor doesnt want to start me on anything prior to appointment due to not knowing what the CD doctor will want to do. I may have to call the CD drs office and talk to the nurse and find out what to do. Is it normal to just feel so tired and worn out all the time? I hope once I get on meds that will improve some. Do you just mostly feel bad during a flair, or is it a non stop situation? Apparently, I have to be scoped again (accoring to the surgeon who did the 1st scope) in 6 weeks, and they may have to remove that norrowed area of my colon if it stays so narrow . But, then again the CD doctor may have different ideas.

I will be gald to get any advice at all!!! 2day i have eaten 1/2 a plain paked potatoe for lunch...which gave me alot of cramping, and 1/2 cup rice for dinner. Lord if only I could eat something that didnt make my belly cramp. Also, I mostly dont have diarrhea issues alot...I have more of long periods without bowelmovements, then a day of ALOT of bowel movements, starting with solid stools, and then progressing into watery diarrhea. Not sure if anyone else have that same problem.
Posted 2/1/2012 3:22 AM (GMT 0)
Hi, sounds like you've had rough time of it, but you've come to the right place for lots of support. A number of others have already posted a number of great ideas that you might want to consider doing. As for myself, I'd suggest as soon as you are able to spend some time reading on line I'd suggest you read, read, read & read more..you might find something no one else has and help yourself and/or someone else(PS you can hook up your laptop or computer screen so you can be laying down and reading and not putting pressure on you organs by sitting up) Do you know the old saying....Knowledge is power...it's really true...try it. As for diet...liquid is really good...soups, jello, boiled spring water, ...no dairy, NO GLUTEN, NO FATS, NO or very very low sugar(you have to read everything, gluten is often hidden under other titles, so be aware of that, unless it's on the package or you've read it on a gluten free website, assume it has gluten, at least for the next few months until you have more time to spend reading and developing your own list of what your own body will tolerate. That will be the easiest way). Also I've read: no caffeine, no veggies that are in the cabbage family(no broccoli, brussels sprouts, cauliflower) & for some of us..no hi starch foods (ie no potatoes (this info is new and not written on many sites, but for some of us, we can't have hi starch foods). Also, read up on how the bilary system works and other disorders like Crohns..in case it's not that or not that alone. Do take a look at the symptoms of Celiac, Pancreatitis, Gastritis, IBS, and learn a bit about the Liver.I know it sounds like a lot...but trust me.I've been dealing with this for 10 years and you'll be glad you spent the time to read. There's lots of info on the web about all of these. So while you are resting, you can be reading and learning. If you are interested in alternative meds, I take 1000 mg of MSM a day for inflammation and 500 mg of Curcumin a day. My GI recommended them to me and they work well for me. I also take an RX for the D....I take Cholestyramine 1x a day. Also if you are interested, read about anti inflammatory foods and natural vitamins, herbs, mineral, etc and see what may interest you that you and your Dr. are willing to try.(As of today I ordered my 1st bottle of Nopalea and am hopeful it will work to reduce the inflammation.I'll report back here on what I've found) BTW good luck and glad you came here. All of us have been thru similar things and have found a lot of emotional support here as well as great information and hand holding. Hope you come back often.

Post Edited (2Hawaii) : 1/31/2012 8:25:18 PM (GMT-7)

Posted 2/1/2012 3:42 AM (GMT 0)
Ah....just read you posted this and wanted to be sure to reply specifically to your last questions...

You said "....heart pounding...It also scares me,"...be sure and read the symptoms of Pancreatitis...you also said..."Is it normal to just feel so tired and worn out all the time"....be careful with the D.... I had the same as you do. When I'd get up to walk just to the kitchen, I'd feel weak and I had to sit down (on the floor many times)...after only 10 steps or I'd pass out. Within days, I ended up in the ER.All they did was give me something like they give children...3 bags of glucose..actually it's just like the Pedialyte (sp?) that you give babies when they have D. I had 3 bags of it (nothing more) and some $800. and 3 hrs later I was fine. So now I keep 4-10 packages on hand or 4 bottles in the frig. It only costs about $7.00 for 4-8 packages from Walgreens or the liquid from Rite Aid or CVS (in the US). If you drink 1 or 2 8 oz bottles when you feel weak, you will most likely feel better, but even though these are over the counter preparations that many mothers give their babies, to be on the safe side...call your Dr. before you drink any and make sure it's OK.

You also said...."2day i have eaten 1/2 a plain paked potatoe for lunch...which gave me alot of cramping, and 1/2 cup rice for dinner."....:(...do your self a favor and stay away from hi starch...some of us can't eat it and some people can not eat anything that is made with bleached flower.

Yes you are right in what you are thinking..you could have more than 1 problem and most likely do. I do. I have at least 3 that I'm sure of and possibly more. If you've read other posts here you will see most of us have more than 1 thing.(In my opinion, 1 things tends to lead/ cause another, so it's a very good idea to get what ever you have under as much control as you possibly can.) One problem is that many Dr.s(GI's included) tend to want to make all symptoms 1 thing and that really slows down making a diagnosis and treatment plan that will help you. After you've read a good deal and found some that articles or studies with evidence that it will help you and you want to try it, if your Dr. Ok's it (via a phone call or nurses message) then try it a tiny bit for a few days and see what happens..Keep written records of all you try(amounts, and the time you took it) and all that happens. That will help your Dr. Oh...last keep coming here and asking...we'll all be glad to help and hold your hand...we've all been there!

Post Edited (2Hawaii) : 1/31/2012 8:57:08 PM (GMT-7)

Posted 2/1/2012 3:46 AM (GMT 0)
2Hawaii

Thanks for all the info, yes I have a huge desire to learn all I can.  KNowledge is power, I have been in the medical field for 20 years as a CT tech, so I do have a huge advantage with alot of medical knowledge.  But, I learn more everyday, like from you just now, I thought a plain baked potato would be OK...I just felt so hungry, but Im scared to eat...and it did make me cramp...live and learn I guess!!  I am so happy to have found this site, and all of you...to help me deal of all of this!!!  To have people/friends who understand how I feel, I have had problems for many years...and now I know why!!I am just really concerned that there has been alot of damage from years of flares that went untreated..One day at a time, thats all I can do!! 

Posted 2/1/2012 4:05 AM (GMT 0)
kimmysue I'm 66 and came down with the beginning symptoms of this some 13 years ago after a life time of eating anything I wanted. I loved milk and dairy and cheese,....and Oh did I love my mashed potatoes with milk and cheese and tons of salt...but you know what...you can get used to another diet and you may not be able to ever eat those things again....and then maybe you will....you've been in medicine long enough to know of all the advances there have been.I too am amazed at all that's taken place over just the last 10 years! I got my degrees in the medical area, which has also been a big help so I also feel if I can help anyone, then that is what I must do as so many have helped me. I do lots of research on the net. Since you have a medical background, have you looked at the relationship between many of the autoimmune disorders and the inflammation they cause? I am currently reading on that and some natural things that may help heal the problems caused by the inflammation. There is more and more being writing on the web all the time. It's really very interesting. I've just ordered my 1st trial of Nopalea and hoping for the best results...I'll let you all know how it goes, but it may take a few months as it's all natural and natural things seem to take a bit longer to work...but they also seem to have way less side effects. Good Luck!
Posted 2/1/2012 4:50 AM (GMT 0)
kimmysue and dusty....it occurred to me that you may not know that it's a good idea to go to a health food grocery store. There you will find gluten free heath foods. There are 2 brands that I use. I hope it's ok to list them here...I have nothing to do with any of the co's I am listing, but I did have a very hard time finding what stores to go to and brands I could eat . I must have spend many hours in a grocery store just reading all the labels. Amys is one brand that has lot of of things that are gluten free and they also have dairy free and they make foods for a number of other heath issues. For bread...again I have nothing to do with any of these co's...but their products do work for me. I can easily eat... Udi's and Rudi gluten free, whole grain...not the white breads. As for Soup...Amys (but most of it is hi in sodium...not a good thing) So mostly I eat Organic Imagine, light sodium...and it's quite tasty. As for stores..I have no idea what's available in all parts of the US, but within 10 miles of where I live(S. Ca. area) I frequent Sprouts Farmer's Markets. I know they are also online and there are other gluten free grocery stores on line, but for those of you that are on a budget...although online stores have lots of choices that I can't find anywhere else, they are expensive. In Orange County Ca there is Mother's Markets and in Fort Worth Tx there is the SunFlower Shoppe.These I have been to and purchased from and was happy with the stores and the products. I'm sure there are many other great health food markets in many cities and I know you can order on line from many health food sites. Also, you can even order directly from the co.'s them selves. The stores I have listed are just the ones I have used.
Posted 2/1/2012 5:04 AM (GMT 0)
Ah....darn...thought I'd included all I needed to...but alas...my brain is not as fast as it was. I though I'd included even thing, but I forgot something important (my brain is the next project I'm going to work on), but for now..it's this.

Anyway..one thing that I've read that is really important to say in regard to food..buy ONLY ORGANIC...and only fresh.

Chemicals and preservatives will make your stomach, (bilay system) much sicker. Your bilary system is like a new baby now and we all know how much care a baby needs.

For now, buy nothing canned and nothing, even in the future, per paired. As for frozen...maybe later on if it's only something like frozen veggies, but nothing more elaborate. As for canned items, unless you read the label and the label says the contents are organic and has no preservatives, then pass it on by.

As for meat, I only eat turkey breast and then it's low nitrate trukey breast by Dietz & Watson that I buy at Sprouts Deli.(Again I have nothing to do with them,but I do eat their turkey breast and they will send you a coupon for it :) ) Be aware that all red meat causes inflammation and many other meats, even white meats have fats in them, even if you can't see the fat. Turkey breast is lowest in fat, yet high protein. So my suggestion is, if you don't want to chance pain and or inflammation, stay away from most meats.... especially red, packaged prepared meats & luncheon meats. I'd suggest you stay away from all sea food. It's something many can't eat.

Just think fresh only and no dairy, no gluten, no fats, no sugar...but trust me...there will be still lots you can eat..things that are really tasty that you may not have yet tired. I just learned about Medjool dates...and I just love them..they are really good!

Post Edited (2Hawaii) : 1/31/2012 10:19:46 PM (GMT-7)

Posted 2/1/2012 11:09 AM (GMT 0)
Hi Kim,

Thanks for explaining what the doc thinks the flushing and increased heart rate is - after I read your post I looked up carcinoid cancer... and the symptoms we get are so similar and due to that release of hormones... so how your doc has explained what it might be for us makes so much sense. I do usually get these episodes after a time being either constipated or very few BMs. So it would make sense that this happens in a similar way to a bowel obstruction. And thats how it kinda feels too inside. I will most definitely be asking my own GI doc about these.

Re your question on feeling tired and worn out. I'm still trying to figure out when I 'flare'. I've had IBS for 18 yrs... and when this would 'flare' I would feel washed out and a bit rubbish... but I can definitely notice a different with CD. I guess the major symptoms stating creeping in last summer... I used to run but gradually this became such hard work... and then it felt like I had a virus, no energy, completely exhausted. Now I have noticed some days I am fine... just tired... and other days I feel shattered and achy like I have the flu. It really varies day to day. When I tried to taper off Pred a couple of weeks ago I felt dreadful - the Crohns pains I feel in my tummy and the fluey feelings... which upset me as I was hoping to feel better than that... so I went back up a bit.

One thing the Pred has helped with is the nausea... when I was really poorly last year the nausea and pain was horrendous. I would vomit too because of it. I think I must have had additional inflammation in the upper part of my system, and even when i tapered it was nowhere near what it was like last year. Thank goodness. It sounds like the pattern of our BMs are similar too... not much diarrhea but then it gradually creeps in after a period of building up. My tummy gets so bloated and distended .. its horrible.

Regarding food.... I used to manage my IBS so well... after so many years I was coping brilliantly and knew what worked for me and what didn't. And now I am back to square one which I am finding very hard. But everything takes time I guess. Rice doesn't agree with me but mashed potato with roast chicken and gravy does .... and I love it :) Thin soups are good too... but again be careful of the veg that might be in there :) I guess everyone is very different when it comes t food and we will find things that work for us in time.

My GI would like me to have surgery, as the problem area is so bad that he is not convinced the drugs will be able to get everything completely back to 'normal'. I am now coming round to that idea, but I want to give the Azathioprine a chance first.

Good luck with your next scope and let us know how it goes... and how you are over the next few weeks x
Posted 2/1/2012 4:55 PM (GMT 0)
"Just think fresh only and no dairy, no gluten, no fats, no sugar"

That just leaves protein? What are your calorie sources?

Long-term, I agree with seeking out a refined diet that works for you. Your IBD doctor may even test you for things like celiac's disease.

Short-term, if I could tell my recently diagnosed self how to handle this gap in time, I would say to start with a liquid diet that has calories, even clear liquid for a day if necessary. If you can, log your daily food/calorie intake, number & consistency of BM's, and notes about cramping/pain/etc. These will be among the questions your GI asks, and it helps to have some detailed notes instead of a general answer. I also find that keeping a log that I will see pattern myself in how I respond to things I eat. This can help with your long-term dietary plan.

Gatorade helps replenish fluids lost with D and provides some calories. Ensure or Boost type milkshake flavored products would be a good short-term calorie fix (250 cal per oz bottle), also loaded with vitamins. My doctor advised me to start with 1 the first day and gradually increase to no more than 6 a day. (They are expensive, but they are meal/food replacements.) I found the vanilla and strawberry to be decent tasting if chilled in the fridge. Other liquid options include cream-based soups (w/o chunks of solid food), ice cream, pudding, yogurt, etc.

Then, even if that helps me feel better after a day or two, I'd stay conservative until the doctors appt. I'd move to a very low residue diet, chewing everything well. I'd stick to things that required very little digestive activity or irritation. Certainly avoiding fruits and veggies. I'd start with crackers, toasts, eggs...things like that. Graduating to overcooked noodles. Tender baked fish or chicken can also be OK in small doses. Even by the 21st, I probably would consume no less than 1/2 my daily calories via liquid foods.

It helped me to stick to small frequent meals/snacks, and avoiding any large quantity meals. I had to get over the "clean your plate" or "don't throw food away" mentality.

I was having a lot of pain and flare related issues in the latter half of 2010. Was told early in 2011 that things were getting too narrow in my strictured area to continue without a bowel resection. Maintaining a low residue, high-liquid diet helped me feel better in that time waiting to see the how's and when's of my surgery.

And I didn't really have many "flashing" episodes, but I did have elevated pulse rates and blood pressure rates throughout this time of partial obstruction. The area of my bowel preceeding the stricture was dilated. My normal, low pulse and BP rates have returned post op.
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