HealingWell
Search Close Search
☰

New and Confused

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/22/2013 11:48 AM (GMT 0)
I am new to Crohn's and I am very confused and even scared. I have a bowl perforation back in November 2012 just a few day before my birthday. Well let me back up a little bit.... I am a recovering drug addict. I have about 3 and half years clean. Every since I got clean I have had stomach issues. In April of 2011 I had my gallbladder removed and after that I was still having stomach pain and diarrhea. My family doctor ran test and said that everything came back normal. Over the next year and a half or so I continued to have problems and my doctor said that I had IBS and Gastritis. This past November I went into the emergency room with pains in my stomach. They did a CT Scan and saw that I had inflammation but they couldn't tell what or why it was happening. At that point they admitted me and they decided to do surgery. The plan was that they were going to go in and take out my appendix and while they were in there they would take a look around. I woke up after surgery only to be told that I had a bowl perforation and that it had happened about 2 weeks before have but that my body had developed a puss pocket and held everything in and saved my life. In the end they removed 8 inches of my small intestine, and inch of my colon and my appendix. That was the first time that I was told that I have Crohn's Disease. After I had recovered from the surgery I started to see my GI doctor. He did a colonoscopy and everything looked great. The biopsy from my surgery was inconclusive because everything that they took out was to dead to tell anything. At this point I have not tested positive for Crohn's but because of everything that I have been going through and the fact that I have all the signs and symptoms of Crohn's they have diagnosis me as having Crohn's. I am being treated with Crohn's meds and antibiotics and Prednisone. I feel great other then the sever joint pain and other side effects from prednisone. At this point I have a vitamin D and iron deficiency and I have to give myself B-12 shots. I feel better then I have been in the last 3 years but I just don't know what to do. I am at the point that I know that I have Crohn's my GI even said that I do but he is not putting it on my charts because I haven't actually tested positive. I feel like I have been on a roller coaster. I just don't know where to start. I am wanting to make life style changes to make sure that I am doing everything that I can to stay feeling good. If you have any advice on treatments, diets, and even any advice on how to handle everything emotional please let me know. At this point I am lost and confused. I just don't know were to start!
Posted 3/22/2013 1:54 PM (GMT 0)
Hey, Jessie, welcome to the forum! You certainly have had a confusing series of events. Sometimes it is really hard to diagnose Crohn's disease. I'm sorry your DRs have left you wondering what is fact and what is fiction.

How long have you been taking Prednisone? What other meds are you taking? Are you able to keep your vitamin D and iron at healthy levels?
Posted 3/22/2013 8:12 PM (GMT 0)
My greetings too! I don't know your age, but your doctor might not be giving you a formal Crohn's diagnosis to keep you from having trouble getting insurance. I know that once a diagnosis gets in your electronic records it follows you around forever. I had drug-induced lupus but since there was no code in the system, I got stuck with the lupus diagnosis even though it cleared up after a year.

The best way to learn about Crohn's is to read about the disease. This site has some great info and links on the Crohn's Resource page: https://www.healingwell.com/pages/Crohns_Disease/

Another great site is CCFA. CCFA has good info on living with Crohn's.

Also, please know that each of us is very different from the other. A med that works for me might make someone else sick as a dog. Something you can eat might make me pot-bound.

When I was first diagnosed, I started a food diary on the recommendation of another member. That way I learned what caused me grief and what were foods that never caused me problems.

Again, welcome to Healing Well!

Posted 3/24/2013 5:38 AM (GMT 0)
Jessie, I've had the same surgery (8 inches of small intestine taken, 1 inch of large + appendix) and I went into remission for nearly 5 years after that. I too have to take B-12 (although I am allergic to the shots so I have to take it sublingually). Crohn's is a really difficult disease to both diagnose and treat, and every single case is different so treatments will be different too. It is really a crapshoot sometimes to find something that works (ba-dum ching!). It is too bad you are on Prednisone, I hope they take you off that soon... you will feel much better.

One of the most challenging and difficult things for me, even 11 years after first being diagnosed, is that there are so few people that understand what a person with Crohn's has to go through in their life and on a daily basis. People don't understand, and sometimes you don't want to share. You will have people thinking that they know how to "cure" you (the most recent "cure" is to go gluten-free, which is totally laughable - Crohn's has nothing to do with wheat or gluten). So many people will give you unsolicited advice. But please, just listen to your doctors and follow your instinct. Eat healthy food and exercise. Do as much reading as you can - that made me feel a bit better when I was first told I had Crohn's. Fortunately for me it was a pretty clear-cut diagnosis so I didn't have to go through the horrible ambiguity you are dealing with.

In the future, you may have to start taking meds that require regular blood tests. You'll get on a first-name basis with nurses and medical assistants. You gradually will become used to getting poked and prodded. For me, it became easier when I met my husband - it is nice to have someone supportive to hold your hand during ER trips, IV insertions, and painful times. So I hope you have someone or a family member there to support you. (My own family didn't even come to the hospital when I was diagnosed and told me I was just trying to get attention. Then they got the medical bill.)

In the meantime, find a supportive group (like this forum!) or go to the Crohn's and Colitis Foundation website (what Ides said!) so that you keep a good dialogue going. The food diary suggestion is excellent as well - it really helped me figure some things out.

I'm sorry this is happening to you. (On the bright side, congrats on your sobriety! I was a rehab counselor and I know how difficult it is. If you can get through that, you can deal with this.) And email me if you want someone to talk to!
✚ New Topic ✚ Reply