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Confused and Looking for Feedback

I am really surprised that I am actually posting on here. I often read peoples posts, which I have found very helpful, but never thought I would say anything myself....for whatever reason, I felt compelled to to share my story and I would love feedback from anyone because I'm very confused.

I am 28 years old and was first diagnosed with Crohn's disease about 3 years ago. My symptoms started about 4-5 years ago and the diagnosis took forever and included multiple CT Scans, MRIs and even what turned out to be a completely unnecessary appendectomy. After my diagnosis, I really wasn't very upset, I was actually happy to have an answer and was relieved it wasn't something like cancer. However, it has been 3 years and I am really at the end of my rope with all of this stuff. I have been on various medications including Pentasa (which give me terrible side effects), Entocort and 40 mg of Prednisone for a year which caused me to gain 25 lbs. I have since been taken off the Predisone and am finally back to my normal weight after 9 months of dieting and working out like crazy. I was put on 6-mp (went form 75-100mg) about 2 years ago which I thought was helping somewhat (I don't know that I've ever been in remission) I still had pain, but not much diarrhea or blood. I recently had 2 flares and it appears the 6 mp is also not working. I am currently having some diaherrea (twice witt blood), bloating, slight abdominal pain and joint pain.....sorry to be so graphic. They want to put me on Remicade. I am definitely not comfortable taking Remicade or any other anti-TNFs after doing my research and seeing the increased risk for hepatosplenic t-cell lymphoma (HSTCL). I actually am not even comfortable being on 6-MP now that I know it also slightly increases your risk for HSTCL even when taken alone.

I don't know what to do. I don't want to take any of these medicines and I'm worried I've already put myself at risk by taking 6MP at all. To top it all off I really want to have a baby. My husband and I have wanted to for a very long time but I can't seem to get myself healthy enough to be able to get permission from my doctors to try to conceive. I really don't want to miss out on having kids due to this disease, and I feel so guilty that I am keeping my husband from having kids. I am just getting to a point where I feel like I'm never going to have a life again. I used to be very social and go out with my friends but I feel like I am so different from them now. They are all having children and getting out an enjoying life. I am so tired a lot of the time and am probably not that fun to be around because I am so down about this illness. I don't like to talk to people about my illness because it's embarrassing. My husband is amazingly supportive, I am so lucky to have him, but I know I am bringing him down too.

Anyway, I am sorry for writing so much, I'm sure I sound very dramatic. I am so confused and I have no idea what to do. Any feedback about other possible medicines (or medical alternatives) or other peoples experiences, or really any hope at all would be appreciated. Thanks.
 
Last edited by a moderator:

SarahBear

Moderator
Hi, Michelle! Welcome to the forum. I'm glad you've decided to share your story with us. :)

First off, it's important to note that risks associated with any medication are just potential risks, and many of them are very, very rare. The risks associated with untreated or improperly managed Crohn's are much more likely to occur.

I would suggest you look into treating with diet. You can find information here: Diet, Fitness and Supplements. If you're able to do so effectively, you could possibly stay on the 6-MP until you're in remission, then taper off (all with a doctor's help) and use diet alone. I wouldn't stop any medication until you're in a stable remission, though.

It's frustrating that you're unable to start a family now. Hopefully things will settle down for you soon and you'll be able to do so! :hug:
 
Thanks Sarah. I'll definitely look under the diet, fitness and supplements link because I'm sure I need to make some adjustments there.
 
Look up some info on the Specific Carbohydrate Diet (and check out the reviews on Amazon for "Breaking the Vicious Cycle"). Also check out the Wikipedia page on saccharomyces boulardii (like Florastor). These are things that help some people and should be safe to try.
You can check with your Dr - he/she may not believe in these things, but can advise you on whether or not they would be safe for you.
 

Jennifer

Adminstrator
If the 6MP was working for you in the past but the dose had to be increased due to an increase in symptoms, you could talk to your GI about adding Allopurinol to a low dose of 6MP. The Allopurinol helps make the 6MP less toxic. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2659140/

6MP is a class D drug when it comes to pregnancy, that means there are possible risks involved but many agree that the risk of untreated Crohn's far outweigh the risk of the drug. A healthy mother is extremely important. Allopurinol is a class C drug, less risk involved but isn't ruled out. Remicade is a class B meaning there's no evidence of risk in humans and we've had many members on biologics during pregnancy and had healthy babies. Its important to keep in mind that the research on these drugs were done for other health conditions like treating cancer or RA and those illnesses require a higher dose than the dose used for IBD.

There's also Low Dose Naltrexone, its a class C drug and we do have a section on the forum for LDN. http://www.crohnsforum.com/forumdisplay.php?f=32 I haven't tried it myself though and don't know much about it. I was going to suggest Methotrexate but since you said you want to conceive soon it's not a good idea (unless you were to stop it 3-6 months before trying to conceive but you run the risk of a flare by not being treated with something) as its a class/category X drug, meaning it should not be used during pregnancy.

It's important to get your flare under control so you can go into remission. You could try diet and medication together to try and get your flare under control quickly. Keep us posted oh how you're doing and what you decide to try. :hug:
 
Don't know, but you do say there is blood, diaherrea and pain. This isn't going to fix itself by "alternative medicine" nor will any diet put you into remission. For all the praise some "diets" get, there is still not a shred of evidence they are effective (excluding EN). Make sure you weigh both sides, letting inflammation run wild can also be risky and life threatening.
 
Thank you all for your feedback. I'm somewhat skeptical about the idea that this disease needs to be treated by meds only. I certainly understand inflammation needs to be controlled, but I'm looking at other methods. I found a Dr from Columbia who has Crohns and has controlled his disease for the past 50 years on diet and probiotics alone. He
had 2/3 of his intestines removed when he was 19 and he has spent his career figuring out a diet for crohns because he did not like the medical options available. I was able to get an appointment for January. It will be nice to meet with him and work with someone who has actual personal experience with Crohns. I understand research has supported diet alone curing this disease, but I also know a lot of the research is funded by pharmaceutical companies and diets are not very profitable for them....

Anyway, I appreciate everyones feedback and will keep you guys posted!
 

nogutsnoglory

Moderator
Research is not only funded by pharmaceutical companies but also by nonprofits and government. Certainly big pharma is a huge part of research if it pertains to them making money.

Diet can be helpful and it's critical for anyone with the illness but most of us can't get by and diet alone and require medication and/or surgery.

I'd be wary of this doctor who claims to have a cure. Believe me, if he had a cure, none of us would be on here, he would be filthy rich and all over the news. He may be in remission for many years and attribute that to his diet but the nature of IBD allows for flares and remission for no obvious reasons.
 
I'm sorry, I wasn't trying to offend anyone. I'm sure there has been research on diet as well, I just have heard that much more of the funding goes into research on new drugs.

I understand everyone's point and I'm certainly not recommending this choice for everyone, this just seems right for me at this point. The doctor from Columbia is not replacing my normal GI doctor....he is a clinical nutritionist who works with other GIs to establish a diet that can help with Crohn's. I am hopeful that with the diet I will be able to either go med free, or atleast avoid taking immunosuppressants or biologics. Again, not recommending it for anyone just saying that is where I'm at right now.
 
Hi Michelle222. I read your post a few days ago but have not had time to reply until now. I'm going to tell you a brief (as much as I can!) account what Ive been through. I do not want to offend anyone and everyone has different opinions on meds and diet etc. But here is my story:

I'd had crohns for 10yrs approx. had a few flares but nothing bad at all. I finally met the man of my dreams and got married. I started with severe endometriosis shortly after the wedding - and didnt get diagnosed for over a year. It was so bad I was taking 50mg of morphine a day by the end and had to leave my job. I started to feel unwell, diaherrea and minor blood etc. had some tests, but nothing much showed. Everyone said it could be the endo. I managed 3 months, got worse and worse, eventually ended up being admitted into hosp after 8 wrong diagnosis. It turned out I had 6 fistulas and numerous abscesses poisoning me, severe perianal disease. I had 3 surgeries and left after 5 weeks, but was left in an awful state of incontinence. After managing for a year, in pain,depressed, constant soreness and numerous embarressing moments I was given a colostomy bag. I hate it, not a day goes by when I dont. I only manage part time work. My husband has stood by me all the way and is amazing.

We have wanted children for ages, I came off the pill 2 months before I got married, 5and a half years ago. In jan this year we looked into IVF and I was told I would struggle to have children due to my health. I was devastated and still am. We had our first round a couple of months ago and I had a miscarriage. We are trying again in January.

Before I got married and just after I was healthy and happy. I have always watched what I eat and exercised. I felt great and didnt want to take any meds so I could get pregnant. If I had taken the meds I wouldnt be in this situation. There are no two ways about that, every specialist has told me so. Or I maybe would have been ill but not at all to that extent. The children issue would still have been the same but I would have tried IVF 4 years ago not 8 months ago and would probably have children now, along with all my friends.

I am on Humira now. I can continue to take it while Im pregnant and I have had no issues in the 2 years I have taken it. I am very like you and look in to all side effect and looked at the cancer issues. The risks are so rare I personally wouldn't say no. I have been through hell and wish someone had warned me how bad things could get. No one wants to be scared about this disease as most things will not happen to you, but it can be truly awful if not controlled.

I dont post often on here, but I am now 35 and after 5 years of trying for children I am still without and heartbroken. If I was you I would get your disease under control, feel better, manage your worries and move on with your life and be happy. I am trying not to preach as my story is complicated and should not happen to most people. But you need to be in remission to be pregnant, get there and give yourself the best chance you can xx:hug:
 
If only diet alone would control this we would all do it,I,ve no doubt it helps along with exercise but we all need medication to get some normality in our lives.
I really detest the warning leaflets in these boxes as they frighten people.i mean a drug designed to stop diahorrea may give you trots,really!dr Google is a big help as well!not.it scares people.take your meds question your dr,medical people and just remember we get bucketloads of blood tests done to pick up any warning signs.speaking of which I thought I was gonna run out yesterday so many samples were taken.good luck
 
I havent read all the responses but. ..
I had my first child on Remicade (they stop the infusion for the last trimester). I was not able to breastfeed on it though - i waited to go back on it so i could breastfeed for a couple of months.

I would say that the risk of cancer is far smaller than the risk of real damage to your internal organs if you dont get ahold of this disease.

the only other thing i can think of is Medical Marijuana, if that is an option for you. It is a miracle drug for Crohns AND has significant anti-cancer properties.

Good luck.
 
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