Crohn's is no joke. Just when you think you have it all figured out -things change

[demtenjeep]

I have had Crohn's for over 10 years now. For the last 8 I have been getting chemo infusions every 5 weeks. The strongest dose with a steroid to help it last. I started out on a lower dosage and every 8 weeks and we have had to shorten and strengthen over the years.

Last night I woke up in excruciating pain which is how pancreatic issues present themselves. Went to the ER on Dr. advice. They ran scans. Nope no pancreatitis but all of my internal organs are smashed together because of the serious inflammation to the Crohn's . Didn't realize that was a complication. As a result, My kidneys are not functioning correctly.

AFter 8 hours in the ER I got sent home with meds and to get rest. Said I should do not much of anything until my infusion Friday. I told doc that I had to go wrangle HS kids to work on their assignments . He thinks I should just sleep until the infusion. In a perfect world I could do that...but I have to work so there is that.


This is the most complex disease. Just when you think you have things managed, something new pops up

Anyway its back to work for me so I plan to eat light, sleep a lot an hopefully I can handle the next 4 days to infusion

[sketchy]

1. Sorry to hear this

Do you like to eat bananas? I've found eating frozen bananas can help a lot with situations of gastrointestinal distress.

[demtenjeep]

2. I love bananas. I would do that

mostly it feels like nothing works diet wise

I just want him to remove the infected parts. He said lets go to every 4 weeks and try that

[REP]

33. If your kidneys are not functioning, don't go overboard with potassium

If your renal function is severely compromised, you can't clear potassium normally. Eating bananas could be dangerous. Not kidding (kidney failure patient).

[Freddie]

3. It's an awful disease

My husband has it, diagnosed 16 yrs ago. His is usually well controlled with meds (mercaptapurine and prednisone for flare-ups) so far, plus he has to be careful with his foods as I'm sure you know. Best of luck and hope you feel better soon.

[demtenjeep]

4. thank you

this cruel disease needs an educational team

[whathehell]

5. I have Crohn's too, but

it's been mild, controlled by drugs alone.

I hope your condition improves, demtenjeep...To that end

it might be best to take your doc's advice and take it easy for awhile.
.

[Android3.14]

6. Not Crohn's but similar symptoms and studies show it works

About ten years ago I had several intestinal resections which resulted in the removal of several feet of my tract and a portion of my large intestine called the ileum. The result was painful symptoms similar to Crohn's along with IBS.

I found a solution in medical marijuana. the antispasmodic effects settled everything down and the anti-inflammatory side of it eliminates the bleeding. Now I have a (mostly) normal life. I only smoke a tiny amount each evening and go through less than an ounce of weed a year.

http://www.karger.com/Article/FullText/356512#AI
"What makes this study even more interesting is that the patients were unresponsive or resistant to conventional IBD treatment, yet 90% found relief with medical marijuana."

I would not be existing with any normalcy if it weren't for Rx marijuana.

[roguevalley]

7. you have my deepest sympathies. I had irritable bowel problems until i lost

weight and changed a few things. I wish you the best. Its a hard task master.

[REP]

34. The worst day with IBS is a day of heaven with IBD

[Jim__]

8. Sorry to hear that you're having those problems.

Being sick is bad enough. But having to work while you're sick is much worse. I hope you're feeling better soon.

[Mika]

9. I have Crohn's. I deal with it naturopathically with good success.

Been thru the wringer myself - as many comment upon.
Switched to the blood type diet as prescribed by Dr. Peter D'Adamo, in his series of "Eat Right For Your Type" books.
It works on reducing inflammation & agglutination via the understanding of the different metabolic function of the blood groups with food types.
This has changed my life.
Also, I use the supplements - Biotin 5000mcg, Zinc Gluconate 50mg, and MSM 2000mg - with each meal (a meal consisting of non-agglutinating food for my blood type).
Since I made the switch I have had very few of the negative symptoms - only occasionally when I deviate my diet in bad ways.
Stress reduction is important also.




Best wishes to you and all sufferers.

[demtenjeep]

24. I have ordered this book. Thank you

looking forward to learning about what can help.



Hubby might get some use from it as well!

[Mika]

29. It takes time, but, you'll notice improvements, I'm sure.

Before your book arrives, make sure you know your blood type. If it isn't in your med records (as is often the case) there are home blood type test kits available.

The supplements & doses I mentioned work for several of my friends and some other family members w/Crohn's who have tried them.

Best wishes to you. Keep in touch with your progress if you'd like.

[Worried senior]

10. My mother had Crohn's.

Hers started in the 1940's and Drs. wore not well versed in the condition, even went to Mayo's with no help.

She suffered off and on for many years and in the 1970's she ended up at a hospital in MI that removed the worst of the intestines and while she still had issues she didn't suffer nearly as much.

[Laffy Kat]

11. That sounds horrible.

You have my empathy. I've lived with IBS since my first child was born 22+ years ago. From what I understand inflammatory bowel disease is a hundred times worse and can be life-threatening. At least my IBS is just annoying. Positive thoughts your way, demtenjeep. And, you know what, HS kids are old enough to get their own act together. THEY should be taking care of YOU! Get some rest.

[COLGATE4]

12. Have you explored the possibility of chemo with

Remicade or Humira? Being on steroids for any length of time is hell on almost the entire body. These biologics can have marvellous results.

[TexasBushwhacker]

14. Talk to Glenn Frey about that

He was on biologics for rheumatoid arthritis and IBS. He got pneumonia and no amount of antibiotics could save him.

[COLGATE4]

15. That is a fairly remote possibility. However there are thousands of people

who have gotten significant relief from severe symptoms by using them. You can't discount them out of hand.

[demtenjeep]

25. I know. I love love love The Eagles and I was devestated

and then even more so as his disease is a cousin to mine.


reminds me of that saying "I was doing fine till they decided to make me better"

[TexasBushwhacker]

27. It's a tough choice

I had a friend that had RA so bad that she had to quit working in her mid 50s. When she tried the biologic she just got sick all the time. So she was just taking big does of Oxycontin.

[demtenjeep]

17. yea

remicade is what I have been on. started with 8 weeks now down to 4 with solucortef to help it bond

Doc is hesitant to change to Humira

I am just wanting him to remove the parts of colon and be done with it but he says it isn't that possible

[COLGATE4]

20. The problem is that, if you change to Humira and

it doesn't work (or work as well) you can't change back to Remicade. BTW, with Chrons it isn't practical to remove parts of the colon, since Chrons can occur or reoccur in any other part of the colon. Is the doc giving you the highest possible (for you) dose of Remicade? Sometimes a larger does is needed.

[demtenjeep]

26. I know. My dr. said the same thing. Said at 50 he was hesitant to switch yet

I am on the strongest dose with the shortest time span between and also solucortef to help it bond

I shudder to think what I would be like (if alive at all) were it not for remicade

[tweetybird]

13. I have had Crohn’s for about 15 years

I have tried most the major treatments for it including biologics and none have worked. My primary triggers are chronic stress and processed foods including sugar. These things create an inflammatory response for me. Medical marijuana at night really does help. It’s a shame such a harmless drug is not allowed medically in most states. Instead very expensive drugs with terrible side effects are prescribed. I had a resection 4 years ago after a fistula was formed from large intestine to bladder. They went in and cut out all the diseased parts they saw at that time. Taking care of your self is essential. My advice is rest and positive mood. Take care of you first. I used to refuse hospitalization because I was a single mom and had no one to take care of my children and I could not afford another bill. I had to learn to let worrying go and live for today.

[Skittles]

35. a heart for you my sweet

excellent post, and welcome to DU

[malaise]

16. Please take care

[demtenjeep]

18. thank you

feel much better this evening after a strict liquid diet and some strong pain meds and IV fluids to ward off dehydration

[kiva]

19. This film is making the rounds at film festivals,

I haven't seen it streaming anywhere, but you might find it interesting, it's well done.

[Skittles]

21. I worked with someone afflicted with that dreadful disease

Last edited Tue Feb 9, 2016, 03:40 AM - Edit history (1)

I learned not to ask questions if he departed suddenly

[roamer65]

22. For about 10 years...

I had diverticular colitis. Colon issues are no fun and I sympathize.

[Doremus]

23. Sorry to hear this.

It's a horrible disease. I don't have it but have had a few friends and acquaintances suffer from it in various degrees.

My friend's husband has a colostomy bag now but is doing 1000% better without his intestines. No more pain.

The tenant of our rental house removed meat and dairy from her diet completely. She has no more symptoms.

Whatever route you decide I hope you're on the path to recovery soon.

[Satch59]

28. So sorry...not easy...

My son has had it for 7 years... He had a resection when first diagnosed (and was really sick and hospitalized in and out for months) and actually has not had much trouble after recovery. He takes the drug 6MP and recently went GF and has been doing very well...

Sending you healing thoughts...hang in there!

[applegrove]

31. Have you heard of this?

http://www.businessinsider.com/fda-panel-recommends-remicade-biosimilar-2016-2

[applegrove]

30. Have you heard of this from crohn's?

http://www.businessinsider.com/fda-panel-recommends-remicade-biosimilar-2016-2

[demtenjeep]

32. no I hadn't

thank you

I will read up on it