Crohn's beginner - advice needed! :)

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mcp22
New Member


Date Joined Mar 2018
Total Posts : 1
   Posted 3/20/2018 7:17 PM (GMT -6)   
I was diagnosed about a month ago after a year of intermittent symptoms. Trying to figure out what direction to go with treatment. GI is pushing me to get on biologics ASAP. I'm not convinced that I need to and would love some input from those with experience.

My main symptom is abdominal pain in the lower right quadrant, and CT scan confirmed 'profound thickening' (6-8mm) of the walls of the terminal ileum (small intestine) for 15cm. I read a study that classified severe disease as being anything over 20mm, so it appears I am well under that.

I did have some diarrhea at first but it was never a major issue and it's pretty well cleared up now. I have been on budesonide and pentasa for about a month and a half and it has helped relieve the abdominal pain for the most part. I am nervous to start going off of it without knowing the next step :/.

My questions are:
-How can I tell how severe my case is? The GI is acting like it's fairly serious but talking to people and reading online it seems like mine is pretty mild (so far). I would like to try some things with diet and probiotics to see if it helps before jumping into something that's going to be expensive and potentially have serious side effects.
-Anyone have other ideas on what alternative therapies have helped heal the small intestine? Has anyone had luck with VSL-3 double strength probiotic?
-How long is it safe to be on the budesonide? Anyone have experience with side effects from it?

Thanks in advance! smile

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16423
   Posted 3/20/2018 10:36 PM (GMT -6)   
Hello & welcome to the forum. The only test you mentioned was a CT that showed the wall thickening. Did you have a colonoscopy with biopsy's? This is considered the gold standard in diagnosing crohns disease. If you have not had this testing, please insist the gi does one before doing anything else. Starting now you should request copies of the written reports of all tests that you have done for your own personal file. You are entitled to this info.

Now is the time for you to educate yourself about crohns disease & the medications used to treat it. I suggest that you go to CCFA.org and read. This is an excellent site that gives true & accurate information about the disease & also has a section about the medications used to treat with. We tell all newbies to go there to get the correct info.. To be blunt, the internet is great, but there is so much bad information on it that simply is not true.

None of us are drs but many of us have been traveling this road a lot longer than you. This is why we want the new people to get reliable info.. While your symptoms are mild from the way you speak & be thankful they are. I do not believe your disease is mild just from what you said showed up on the Ct. This has been brewing silently to have this thickening, it didn't happen in a few months or weeks, this is how crohns works silently until all he!! breaks loose. Thickening of the walls means some narrowing going on & can lead to obstructions, fistulas & even resection surgery. So, please do not down play what you have going on basing it on your current mild symptoms. I suspect this is why your dr is recommending a bio for treatment.

As for diets yes there are all sorts of diets all over the internet & many of them are fad diets. People will state the diet worked wonders for them, all they are doing is promoting it for someone else. Now, I will say this, if a person has documented very mild crohns with no symptoms they may have a chance to keep things in check until the bottom falls out. Not everyone fits that category. Anyone can write any story they want on the internet, that does not mean its the truth, you take it with a grain of salt & move on.

As for medications & the costs involved. Many of the bios offer patient assistance programs that works with insurance & people often get the medication for free or at a reduced rate. What you do is go online to their website to see what they offer.

Remicade & Humira turned my quality of life around after a resection surgery. Sure they are in the bio group. I was healthier on those meds than I ever was. I think its because they were doing their job. I had fewer colds & fewer infections. Sure they have to state they can possibly lower the immune system but it does not affect everyone that way. I see a lot of people think if they get a cold or sniffle it has to be because of the bio they are on & honestly that is more fear than anything. Living with crohns can be stressful enough, just don't add in unnecessary stuff. Again, it comes down to educating yourself about everything.

I honestly think you need to read up on things including the meds & then sit down with your dr & discuss things in greater detail. Get his take on why he is recommending a bio & explain to him you need a better understanding of things.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 1120
   Posted 3/21/2018 3:13 AM (GMT -6)   
Hi Mcp22,
I 100 percent agree with Straydog. We have all been there, we all fear the side effects, many of us have tried to put off more potent drugs and only have stories of complications that either snuck up on them completely out of no where or gradually lowered their quality of life. Crohns is as sneaky and deceptive as it gets. I paid the price for putting of good maintenance medication by developing fistulas and strictures over the years, many of which came when I least expected and thought I felt great. You need a good MD who will explain the complicated nature of Crohn’s disease because it’s far more complex than it seems when you are first diagnosed. You need to either trust your doctor or find an MD that specializes in Crohns that you do trust the opinion of, can have a discussion with and so that if an issue does come up while on the meds it will be addressed immediately. I can guarantee you your doctor has no reason to mislead you or exaggerate your disease severity. The risk for colon cancer and complications from uncontrolled inflammation is real. Make an informed decision and do your best to stop the disease while you can before it gets out of control.

Post Edited (Labradorite) : 3/21/2018 7:28:30 AM (GMT-6)


NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10555
   Posted 3/21/2018 7:59 AM (GMT -6)   
I don't know about that particular study, but in my experience medical reports and doctors don't exaggerate - if it says you have "profound thickening", then you probably do. If your GI thinks you have a fairly severe case of Crohn's, then you probably do.

Only a minority have genuinely mild Crohn's. For that subset they don't need to be on biologics. For the rest of us, the disease will get worse over time; scar tissue will develop, strictures & fistulas form, etc. We ought to be on biologics. If you've already got thickening/narrowing at diagnosis, then you are in the group of people with Crohn's who ought to be on a biologic.

Diets can help with symptoms, but there's zero evidence that they can halt the progress of Crohn's. As for probiotics, save your money for the biologics: there's little evidence for the use of probiotics in treating Crohn's. If you need to go on antibiotics, that's the best time to take a course of probiotics.

Budesonide is safe for up to 6 months. It's a topical steroid (i.e. it works on the gut lining and doesn't get into the bloodstream). That massively reduces the severity of side-effects compared to prednisone, which is a systemic steroid and acts on the entire body. I've been on budesonide a few times and had no issues with it.

Best of luck. I'm sorry about your diagnosis, but I do think you ought to start on a biologic now rather than later.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 1120
   Posted 3/21/2018 8:52 AM (GMT -6)   
also take a look what I mentioned in response to this posthttps://www.healingwell.com/community/default.aspx?f=17&m=3990040

bbkitten
New Member


Date Joined Mar 2018
Total Posts : 2
   Posted 3/27/2018 7:37 PM (GMT -6)   
I have severe CD so I have no advice on the not taking medication part because frankly, I wouldn't be here without them. But as for scopes DO MORE. At least to a colonoscopy, but really push for the whole deal. I'd say an MRI, colonoscopy, and endoscopy are the trifecta of CD diagnoses scans. Heal well & stay strong!

tired55
Regular Member


Date Joined Feb 2010
Total Posts : 78
   Posted 4/29/2018 4:58 PM (GMT -6)   
hi I'm Joy , I've had crohns for 40 years I have had several bowel resections, and fistula surgeries along with other complications. I strongly agree with everyone else know your disease as best as you can, that way you can make informed decisions on your treatment. When I got it I was 16 and allergic to sulfur which at the time there wasn't much to treat it with so predisone is what I had on and off. I can tell you this, when I was young I didn't take this disease serious, when your a kid nothing can touch you , so I drank alcohol and I didn't take very good care of myself. You really have to keep an eye on what you eat what bothers you everyone is different . My dad had crohns as well and he eats things I would not touch. And he has never had surgery and he has had it for almost 15 years. You should get a colonoscopy and make haste because if the wall is thickening thats not good. I took mp6 , for about 10 years then had a drug toxicity to it. My dad still takes it and is doing well. I am on humira now and its working well to. hope this helps.

Post Edited (tired55) : 4/30/2018 3:10:35 PM (GMT-6)


andercats
New Member


Date Joined Apr 2018
Total Posts : 2
   Posted 4/30/2018 1:08 PM (GMT -6)   
I'm a (relatively) newly diagnosed CD also (2 years). I was on high dose prednisone for several months after my initial diagnosis and weaned off over several months. I hated the steroids - made me very shaky, nervous, hyper, gave me dry mouth, and I lost a lot of hair. Although, the hair loss could have been from the protein deficiency from the significant weight loss I had from that first episode. Anyway, I went into remission and had no further problems until recently. I had a very significant flare about a month ago - lost 30 pounds when I was already thin, dehydrated, etc. I'm seeing a different GI doctor now, and he went over my records and said he doesn't agree with using a "bottom up" approach to treating CD. He said that because I already had moderate disease (as presented in my initial colonoscopy 2 years ago), it is better to start on a biologic (or immunologic) to halt the disease process faster. He said that prednisone had a much worse side effect profile in the long-term, and that once you use it and go off of it, it is relatively ineffective after that (for CD). HE doesn't use the ASA-5s unless the disease is mild, if the person is young (I'm 56), or if the person has contradictions to biologics or immunologics. When I really looked at the side effect profiles of Humira (which I just started) versus prednisone, I realized I would much rather be using Humira or an immunologic long-term than prednisone long-term. Of course, I would much rather not have CD at all, but what can you do? I haven't seen any effect of Humira, but I just started it 2 days ago. I'm hoping it works. Regardless, I wish I had started a biologic or immunologic when I was newly diagnosed, because this episode is a real bad one.
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